Irene’s Ghost, a film by Iain Cunningham, premiered at the Curzon , Mayfair on Saturday 13th Oct, at the British Film Institute’s London Film Festival 2018.
Some of APP’s staff and volunteers were able to attend the premier on the weekend and here’s what Heather Heron, APP Fundraising Volunteer, had to say:
“When did you last witness spontaneous applause and a standing ovation at the end of a film? For this film-goer: the one and only time was at a showing of ‘I, Daniel Blake’, at The Quad, Derby. Even then the audience dared not to get to its feet. Yet that is precisely what happened after the showing of ‘Irene’s Ghost’ last night. This film was truly a creative tour de force; so much more than one man’s journey into the past secrets of his mother’s death at the capricious hands of Postpartum Psychosis.
Funny, tender, raw – it seamlessly laid bare the struggles of a family faced with guilt, loss, and the oncosts of perinatal mental illness. Iain Cunningham, in his quest to uncover truths, is clearly fighting for his very soul. Drifting, as it does between real people’s pain and beautiful animation, we are transported into the world of the child as it tries to glimpse the lost mother in nature’s spirit-world.
Unmissable: if necessary – knock down the doors of your independent cinema until they show it.”
You can catch it again at the Film Festival, as it’s being shown a second time on Tuesday 16 November, at 1pm at The British Film Institute, Southbank NFT 3.
Reviews of ‘Irene’s Ghost‘:
One Room With A View - a 4 star reviews
The Upcoming – 4 stars (Andrew Murray): ”Irene’s Ghost is an incredibly personal and utterly powerful journey of discovery that revolves around uncovering the tragic story of a lost relative; yet it’s much more than this. It’s a profound examination of the power of memory on how what we remember not only shapes how we think of the past, but how we see ourselves in the present. We won’t be forgetting Irene’s Ghost anytime soon.“
The Best Beginnings
The National Lottery - included ‘Irene’s Ghost‘ in their festival round-up
We were very sad to say goodbye to APP’s Treasurer and Trustee, Sue Blamire, who retired at the end of March 2018 after 8 years. Staff and Trustees had a whip-round for a thank you present.
Sue was a founding Trustee of APP and helped to set us up as a charity in 2010. Sue became our Treasurer, not only performing this role for us, but also being our Finance Officer, book-keeper, HR advisor, general employment practices researcher, along with many other roles besides. Sue has decided, with the birth of her 4th grandchild and a house project on the go, that it is time to retire as a Trustee.
Dr Jess Heron says: “I cannot thank Sue enough for all she has done in her years as Trustee and Treasurer – for her tenacity in sorting out the paperwork to set us up as a charity, in managing APP finances, her incredibly hard work at keeping us current, and for her willingness to stick with us as the work mounted. APP has grown beyond recognition since 2010, and at times, the job of Treasurer and managing APP finances became an almost full time role. She leaves her role as Treasurer with healthy books, a clear picture of our financial position, good relationships with Auditors and a close collaborative relationship with APP staff who will take over the management.”
Sue recently got in touch to say “Thank you so much for arranging the leaving gift of the beautiful Emma Hardiker picture. I really love it and its going to take pride of place in our new kitchen/living room when we move. It was very generous of people to donate and I’d appreciate it if you would thank everyone for me.“
APP are seeking a new Treasurer to join the Board of Trustees, to oversee finance procedures and help with forecasting and planning (don’t worry, the role no longer involves book keeping and making payments!). If you have some time to spare and are interested in helping us, please contact: firstname.lastname@example.org
After 6 years in the making, it’s a wrap for Iain Cunningham’s film Irene’s Ghost, which is premiering at the BFI London Film Festival this Autumn! Thank you to all the APP experts and volunteers who worked with Iain when he was researching his film, and to the many APP members who were filmed during Iain’s research.
This part documentary, part animation film follows Iain’s search to find out about the mother he never knew. “Irene died before Iain was old enough to form memories of her. The layers of silence surrounding her death were so tightly bound that it has taken him decades to broach the topic with his father. As Cunningham encounters long-lost relatives and Irene’s best friend, Lynn, he gets to know his mother through the stories they tell. Like putting pieces of a puzzle together, Irene’s personality comes to life. Bursts of animation illuminate memory and fantasy in this moving portrait of mental illness, grief, and female friendship.”
Dr Jess Heron explains “Iain’s wonderful film will help to raise awareness of Postpartum Psychosis and its impact. It brings into sharp focus the inter-generational impact of stigma, shame and silence surrounding the illness, and reminds us how important it is that we find ways to talk to children about difficult subjects. Iain’s gentle and moving film will have broad appeal, even to those who have never heard of Postpartum Psychosis, as a reflection on family life, the issues with ‘family secrets’ and the bravery required to search for ‘truths’.“
The premier is taking place on Saturday 13 October, 6.15pm, at Curzon Mayfair Cinema, as part of the BFI London Film Festival, with a Q&A session with Iain following the film.
There will be a second screening on Tuesday 16 October, at 1pm, at the BFI Southbank. Tickets for both screenings are available to book now on the BFI website here.
Postpartum Psychosis has, for many years, been shrouded in shame and fear, silencing the women and families who have suffered it. This silence has an impact that reverberates through our community.
Postpartum Psychosis is as common as Downs, yet there has been limited research & public/professional awareness. It has been reported since the time of Hippocrates, and is a leading cause of maternal death, yet in the UK, services are only now beginning to adapt to meet the specific needs of this population. Lack of public awareness causes delays in identification, resulting in more severe, and difficult to treat episodes; increased risk to safety of mother/newborn; and greater harms to friendships and relationships. It impacts on recovery: causing isolation, shame, and reluctance to talk to others; making it hard to meet others with similar experiences; and hard to see examples of recovered, well functioning families. The impacts of this silence and shame, for some families, can last a lifetime.
APP set about changing this by: training and supporting media volunteers to tell their stories in public; supporting Regional Reps to tell their story to inform and deliver training to local health professionals; creating an active peer community to share personal stories, information, normalise the experience and begin to break down stigma; developing accessible co-produced information, making research and personal experience available to all. We helped to form the Maternal Mental Health Alliance to amplify the voice of affected women and families.
On June 19th, we had the chance to celebrate the power of personal story at Birmingham University’s Mind Reading 2018.
Jenny Pagdin, one of the presenters, explains more:
“In June, I had the privilege of reading and speaking at the Mind Reading conference with APP’s director Jess Heron, and with Sue McKendrick and Fiona Putnam, who both have lived experience of postpartum psychosis, as I do.
Sue and I read our poems about pregnancy, psychosis, depression, recovery and family life – Fiona read extracts from her personal story and performed an amazing rap on early motherhood and depression.
I wasn’t nervous beforehand because it felt like such an honour to be able to attend and share my experiences. This was my second experience of meeting other PP mums – the first time round I collapsed into tears of relief at meeting other ‘normal’ people with this strange experience. This time, I felt empowered, strong – and most importantly, helpful. We know from the lovely comments that our poetry and discussion entertained and educated the audience – a brilliant feeling.”
Sue McKendrick explained
“Some of my poems were written as I tried to come to terms with and make sense of my personal experience of psychosis after the birth of my son in 2000- I never imagined that I would have the opportunity to read these aloud, let alone to such a receptive audience. It was an honour for my story to be shared alongside the very powerful and moving experiences of Jenny and Fiona.
When I became ill there were only two mother & baby hopsital places in Scotland (already taken) and limited relevant information. I am so pleased that APP is raising awareness and providing support to change the landscape for parents facing this traumatic illness.
In the early stages of recovery from postpartum psychosis, I joined a writing group at a psychiatric day centre; this was useful in rebuilding my confidence as initially I had struggled to write a single sentence. As I am a Medical Statistician by background, I had the idea of writing a book called “Method in my Madness” but this seemed a fantasy at the time (though I eventually managed to self publish a book of poems 16 years later). I wrote the following poem for the Mind Reading conference; I was thinking about healing after mental illness – what are the key ingredients for a good recovery?“
A Healing Sonnet - by Sue McKendrick
The wound lies deep
but there’s no blood, no stitch,
no scab; it does not weep
or leave a lingering itch.
When trauma festers in the mind,
consuming your thoughts, twisting in knots,
what healing actions or words might we find?
There’s no cream or cloth to wipe away the blot.
This wound can’t be dressed to heal in days,
but slowly reconnects in a jigsaw compilation.
Cool your feet in sweeping waves.
Relax by a crackling fire. Seek your inspiration.
What words, whose words might refocus this daze?
The scent of lavender wafting in the Summer haze.
Dr Jess Heron, APP Director, said “It was a really interesting day. Fiona, Jenny and Sue took the audience through a powerful journey from birth to illness and recovery. Through poetry and story, they could engage with the health professional and academic audience on a fundamental level.
We had a chance to discuss the process of ‘writing for recovery’ and the benefits to one’s own recovery and to others. Postpartum Psychosis is a vivid, sensory, bizarre, confused and awful experience, occurring at a seminal time in a woman’s life. The process of capturing it, ordering it, giving it form and boundaries, removing it from a state of never-ending mental rehearsal and rumination can help in a person’s recovery. Once written, it can be shared and used for more positive ends to inspire, educate, generate understanding and acceptance. We have found in APP as well, that reading personal stories can be incredibly helpful to recovering women and families, enabling them to understand that they too will recover, to articulate difficult emotions, and to know that they are not the only person in the world to experience this horrible illness.
For APP, and the MMHA, importantly, personal stories also hold a magnificent power to affect and educate others, from the general public to health professionals, commissioners, and policy makers. Annihilating the stigma and silence around this illness is paramount, so the chance to speak at Mind Reading 2018 to such an interesting and receptive audience was really fantastic.”
APP Director, Dr Jess Heron, and APP Wales Volunteers Sally Wilson, Sarah Dearden, Charlotte Harding & Barbara Cunningham attended the launch of the NSPCC Cymru / Wales report Bumps to Babies: Perinatal Mental Health in Wales. The excellent report, written by Sarah Witcombe-Hayes and supported by NSPCC, National Centre for Mental Health (NCMH), Mind Cymru, Mental Health Foundation and Maternal Mental Health Everyone’s Business Campaign, examines the experience of women who suffer pre and postnatal illness in Wales. It makes a number of recommendations, adding weight to the findings in the report by the Welsh Assembly’s Children, Young People and Education Committee (Perinatal Mental Health in Wales, October 2017 ).
Lynne Neagle, Assembly Member, chair of the committee and sponsor of the event, opened the launch by summarising the Welsh Assembly’s report and the future for perinatal mental health in Wales.
Sally followed with an eloquent and powerful talk about her personal experience of postpartum psychosis and the impact of lack of specialist services and a Mother and Baby Unit on her care and recovery. Sally talked about the fabulous parts of her care and the impact of some of the amazing people that supported her too. She called for: a Mother & Baby Unit in Wales; specialist services for those who need it; training in maternal mental health and postpartum psychosis for health professionals; and access to information and peer support for all. Sally left us – a room full of campaigners, MPs, health professionals, policy makers, and academic researchers – in no doubt about the difference these services would make for families in Wales. Sally volunteers for APP as a Postpartum Psychosis health professional trainer, peer supporter and regional rep.
Next up, Sarah outlined the key findings from the report which included barriers to identifying perinatal mental health problems, the progress of specialist perinatal mental health care in Wales, third sector provision in Wales, how we can support families affected by perinatal mental health problems, and highlighted a number of recommendations. A panel discussion included Professor Ian Jones (Trustee of APP & Director of NCMH), which centred on the great progress that has been made in Wales in the last few years and what the main priorities are in moving forward.
This was an important day for perinatal mental health campaigners in Wales. We raised a great deal of awareness of PP, distributed lots of PP information to health professionals, met some lovely women with personal experience who we hope to stay in touch with, and made important connections to begin to make a change for families in Wales.
APP would like to hear from anyone in Wales who has personal experience of PP and would like to join our Lived Experience network aiming to make changes for women and families affected by PP in the future. Email: email@example.com
APP is seeking a part-time peer support facilitator with lived experience of postpartum psychosis to support women in the new mother and baby unit in Chorley, and in the community in Lancashire and South Cumbria.
The Peer Support Facilitator position will be home-based (with time in Ribblemere Mother & Baby Unit, Chorley and travel around the Lancashire and Cumbria regions), part-time (2.5 days a week) for a 24 month fixed term contract, with possible extension for a further 3 years.
APP is the national charity providing support and information to mums and families affected by Postpartum Psychosis (PP). PP is a severe form of postnatal mental illness that develops, often out of the blue, in the days and weeks following childbirth. APP works with women, families, academics and specialist clinicians to: raise awareness of PP; develop information; train health professionals; facilitate research; and run an award-winning specialist peer support service.
The Peer Support Facilitator will work within the Lancashire Perinatal Mental Health NHS team to support to women, partners and families affected by Postpartum Psychosis. If you have personal experience of Postpartum Psychosis and have excellent communication skills; sound knowledge of the principles of peer support; and experience of supporting others as a volunteer or worker, we would love to hear from you.
Please click here to find out more about this position and how to apply.
As part of Maternal Mental Health Awareness Week, and on World Maternal Mental Health Day, APP was invited to the Sheffield Perinatal Mental Health Service ‘Perinatal Get-Together‘ on 2nd May 2018.
The invitation to ‘let’s eat cake and celebrate surviving motherhood together‘ saw a fantastic turn-out on a grey day in the city centre. Around thirty mums, dads, family members, friends and little ones gathered to shelter from the rain and share experiences of using their local perinatal service, supported by the wonderful staff team from Sheffield Health & Social Care NHS Foundation Trust.
The artwork created was really touching to see, and as Twitter was full of photos and stories about World Maternal MH Day, it was fitting to be in a room with others.
As well as chatting to the staff team and some of the Mums who had experienced Postpartum Psychosis and other perinatal mental health issues, it was great for me to be able to meet a new Regional Rep volunteer, Lesley, who said:
“Thank you so much to Sheffield Perinatal Mental health for inviting representatives from APP. It was such a fabulous afternoon with delicious cake which always help . It was a huge success, with an excellent turn out and lots of valuable information gathered from people who have used the Sheffield service to get ideas on what has helped them and what areas need improvement.
It was also a lovely opportunity for me to talk to some of the ladies that have used the service. They opened up to me about how they felt they were failing as a new mum and how most things were a real struggle. I hope by sharing my story a little about my struggle with PP that it gave them some reassurance that things do get easier. It was so rewarding for me to hear the ladies open up to me and say how the services and chatting had helped them. I hope to be able to help out at more events like this and raise awareness of PP, as a volunteer with APP. We even made the local paper!“
For more information about the Sheffield service, which will be expanding thanks to recent Wave 2 Community Services funding, see here.
We learned of the amazing news that NHS England will be funding perinatal mental health services across all of England within the next year, which will end the postcode lottery for accessing the right support.
This comes as a result of amazing work and dedication from the Everyone’s Business Campaign at the Maternal Mental Health Alliance, as well as the NHS perinatal leaders and the prescient funders such as Comic Relief, working together for change. A real moment to celebrate!
We know from hearing many stories from those affected by Postpartum Psychosis what a huge difference it makes to recovery when they are supported by a specialist perinatal mental health team.
We hope that all new teams can be trained to identify & care for women and their families who are experiencing postpartum psychosis, which would make a huge difference on the ground and transform women’s lives.
APP is looking for a Treasurer to help with robust financial management, planning and reporting. The Treasurer will oversee the work of the Accountant and Book-keeper in partnership with the Director and Operations Manager.
We are looking for a Treasurer who is experienced in supporting small organisations and planning for long term sustainability. They will be able to communicate the financial position to the other trustees and assist the organisation with growth, risk management, forward planning and fundraising strategies.
We would like the Treasurer to be able to commit 1 day a month of their time for APP work and to be responsive on email. Our team is distributed across the UK, so phone and Skype meetings are important.
You can download the Treasurer role description here.
For enquiries, or to express interest in the role, please email us.
A new study ‘Qualitative exploration of the effect of a television soap opera storyline on women with experience of Postpartum Psychosis‘ has just been published about the impact of EastEnders’ award winning Postpartum Psychosis storyline on women with personal experience of PP, by medical student Lewis Roberts working with APP.
The research explored how the storyline and concomitant increase in public awareness of postpartum psychosis have been received by women who have recovered from the condition. Nine semi-structured, one-to-one interviews were conducted with women who had experienced postpartum psychosis. Thematic analysis consistent with Braun and Clarke’s six-step approach was used to generate themes from the data.
The results showed that public exposure provided by the postpartum psychosis portrayal was deemed highly valuable, and its mixed reception encompassed potentially therapeutic benefits in addition to harms. The research highlights the complexity of using television drama for public education and may enable mental health organisations to better focus future practices of raising postpartum psychosis awareness.
APP trustee Clare Dolman reports on her PhD which some APP members kindly contributed to.
If you’re a woman with bipolar disorder and you’re contemplating having a child, there’s quite a lot to consider. We now know from research (often conducted with the help of Bipolar UK members) that about 50% of women with bipolar are likely to have some sort of episode during pregnancy or postnatally. But 20-25% of women with bipolar will suffer a postpartum psychosis (PP), which is a more severe episode which requires emergency treatment and usually a stay in hospital.
Though these statistics may seem alarming, it’s important to recognise that a) there’s a 75% chance you won’t have a PP and b) if you’re unlucky and do, PP usually responds very well to treatment and you can get back to being a great mum to your baby very soon. When I suffered a PP after the birth of my daughter, it was an advantage that I already had a diagnosis of bipolar because both I and my husband knew within days of the birth that I needed psychiatric help – whereas it often goes unrecognised for a long time in women without a diagnosis, thus giving the condition more time to get worse. I had to go to hospital for five weeks and stop breastfeeding so I could restart my lithium, but I never lost the bond with my daughter and, once home, quickly re-established a routine of caring for her.
For my second pregnancy, I decided to do all I could to avoid anything similar happening so I made sure I consulted psychiatrists and arranged for lots of support after the birth. In retrospect, I think two things determined a healthy birth and postnatal period: 1) having contingency plans in place in case I needed help (which made me less anxious about the whole process) and 2) deciding not to breastfeed so I could take my Lithium straight after the birth and my husband could help with night feeds, allowing me to get my sleep (so important if you have bipolar as we all know).
Having been involved in Bipolar UK and APP for many years now, I started helping Professor Ian Jones to run ‘Bipolar and Pregnancy’ workshops, which made me realise how many other women and their partners were struggling with all the decisions facing them around having children. Would their bipolar medications harm the baby? Or if they stopped them, would their illness harm the baby? Should they stop their medication before getting pregnant – or switch to something else? Would it make a difference what type of birth they have? Should they breastfeed or not? How much support were they likely to need? Should they do a Birth Plan? Was there a chance their baby could be taken away from them? Should they risk having a child at all – might the child inherit bipolar?
So many questions, but when I looked for the research on this subject, there was very little to be found. Largely because of the difficulties of conducting research with pregnant women and the general lack of focus on bipolar disorder. To find out what decisions mattered most to women themselves, and the factors that influenced them, I’ve been pursuing a PhD at the Institute of Psychiatry, Psychology and Neuroscience at King’s College, London, entitled “Women with Bipolar Disorder and Pregnancy: Factors influencing their Decision-making regarding Treatment”.
I interviewed 21 women with Bipolar 1 (the risk of a postpartum episode is higher for Bipolar 1 than Bipolar 2) and a further 50 women on Bipolar UK’s e-community also contributed their views, so – as I know many APP members are also part of Bipolar UK’s community – this is an opportunity to say another ‘thank you’ to all those who helped with the study and to tell you some of the results. I still have corrections to do before I can officially say I’ve completed my thesis, but I have published two papers, one of which is available to read in the British Journal of Psychiatry (Open Access).
My project involved qualitative research, that is I was gathering views and information from sources like one-to-one interviews, analysing them and trying to make sense of the major themes that emerged, rather than describe the statistics of how many people said what (a ‘quantitative’ analysis). From the interviews and internet correspondence with women with bipolar it became evident that there were 4 major clusters of factors influencing their decision-making around pregnancy: Context, Fear and Stigma, but also a very powerful sense of how important having a child was. This diagram illustrates some of the sub-themes under the first 3 headings:
As can be seen, women were frightened of many aspects of childbirth and some suffered stigma but, despite all the obstacles and difficulties they faced, the vast majority of women in this study still wanted to have children – or if they had already given birth, none of them said that they regretted the decision.
Various aspects of the context in which they were considering becoming a parent were important to different women. For example cultural factors were significant for some, such as the Nigerian-born woman who said her family were harassing her to have a child to improve her mental health, or the Pakistani lady who felt her family didn’t understand how she felt because “In Asia they don’t believe in mental illness”. Many women felt the extra pressure of the biological clock “ticking like crazy”, and the degree of support they felt they had was important: both from their partner, if they had one, and their wider family.
“My Mum has been amazing …she actually did the night feeds and stayed on a camp bed in the front room…She’s been a huge source of support.“
The level of support from services was a big factor for some – as this post on the e-forum illustrated:
“I was also visited by one of the nurses from my local MBU and it was explained what would happen if I had to be hospitalised. It really put my mind at rest to know – and to know that I would not be split up from my daughter if I got ill.“
Another major theme was stigma, which had four sub-themes: some women were worried in advance about the stigma they thought they’d encounter (termed ‘Anticipated Stigma’), and several mentioned the role of the media in exacerbating society’s stigmatizing attitude towards them, as this woman said:
“It’s the very occasional person with severe postnatal depression who harms her child that’s in the media …not the people who’ve managed… It frustrates me the way that bipolar is depicted.“
Stigma from health professionals was an important theme; women felt that some doctors were deliberately unhelpful because they didn’t approve of them having children. As one interviewee said: “It’s almost like ‘We shouldn’t really let the mad people have children.“ Lastly, several women said how upset they were by the attitude of some maternity staff because they couldn’t breastfeed: this Irish lady got quite angry: “I detested staying [on the postnatal ward] … I got a lot of ‘Why aren’t you breastfeeding? Why?“.
There was another large cluster of themes under Fear: fear of harming the baby by taking medication; fear of becoming ill, especially if not on medication. Some were also worried about being a bad parent and coping with the lack of sleep; another concern was the possible strain on their relationship with their partner. The genetic risk was raised by some as a worry (in fact, there is only a one in ten chance of passing on the condition) and many women were frightened that Social Services might take their child away (a very rare occurrence dependent on a number of social as well as medical factors).
In conclusion, this study highlights the fears women with bipolar have around pregnancy, and the problems they experience getting reliable information and advice. All women should be able to see a specialist perinatal psychiatrist and there is a need for more training for all health professionals.
Having children when you have this condition can be challenging and involves a careful weighing up of the issues. It’s important to get as much information about how you as an individual can stay well: so find out what services are available in your area, try to get referred to a specialist perinatal psychiatrist, do some research and find out how others in a similar position have coped.
It’s by no means inevitable that you’ll have a difficult time and, by preparing as well as you can, you’ll give yourself the best chance of staying well, as this contributor to the study said:
“I had only one midwife who followed me my whole pregnancy … [who] was very aware of what bipolar is. I …was also referred to the CMHT and had a fantastic nurse who still visits me. We agreed on a care plan and I saw the psychiatrist a couple of times to decide what medication would be best … Without the team I was surrounded by I would have probably ended up having to be in hospital. They are the only reason I managed to stay sane.“
Finally, despite the number of fears and worries, most women said these were outweighed by the strength of their desire to have a child. There was also widespread agreement that a decision aid of some kind would be helpful so that’s what I hope to work on next.
You can read some of the results of Clare’s research in the British Journal of Psychiatry here
Clare Dolman and her daughter, Ettie.
With thanks to funding from Comic Relief, our Peer Support Coordinators, Ellie and Hannah, and Director, Jess, were able to travel to Bristol to meet with members of the Bluebell peer support team, to share ideas and hear about each other’s projects, both of which are funded by Comic Relief.
Here at APP we are in the process of developing and trialling face to face peer support, and so it was so invaluable to hear Bluebell’s experiences as this is the support they provide. It was particularly helpful to hear about what information they ask families to give them, and their contact and relationship with outside agencies. At APP we have delivered all (or nearly all) of our peer support to date online and expanding face to face meet-ups feel like a natural progression… It’s also something that our women and families often ask for – we know how isolating PP can be and meeting others can be such a “lightbulb moment”. But we are also really conscious that we need to get it right, so speaking to another organisation which is already doing it so well was really valuable.
It was really helpful to hear how they explain to people who use the service the limits of confidentiality, such as around issues of safeguarding and think about how this translates from what we already do online. Bluebell also shared the forms that they use to collect and record information and it was good to see that some of this was covered in the things we had already thought of – plus other documents and ways of working gave us further points to consider.
It was interesting to hear about the different support they offer: groups held at their centre in Bristol, and individual support provided to people in their homes, and to discuss risk management and lone working policies. It was useful to talk about the different ways of involving professionals and making use of clinical expertise, while still keeping a focus on peer support. A key part of APP’s face to face peer support will be social groups, which fits with our aim of building a national PP community and alleviating the loneliness that women and families affected by PP can sometimes feel.
It was also wonderful just to connect with other passionate colleagues and share our personal experiences of perinatal mental illness: there is always a solidarity, understanding and power in those two little words: “me too!”.
Thank you so much Comic Relief for your commitment to facilitating connection and collaboration – this meeting will inform our practice as we develop APP’s peer support services throughout the UK.
On 3rd February 2018, APP held another successful Peer Support Volunteer training day at the fantastic Bluebell Place in Bristol. It is amazing to have the new volunteers up and running to ensure our Peer Support Service can continue meeting demand from mums and families affected by PP, both on the PPTalk forum, and in 1:1 messaging.
It was another wonderful day and really special to be together as women who have had PP and share our experiences. Two of our new Peer Support Volunteers told us how they felt about the training day:
“The training day was really well organised, there was a lovely welcome from Ellie, Hannah, Jenny and Jess and we were all made to feel valued. It was an emotional day for me at times as this was the first occasion I had met any other mothers who had also been through PP and it was touching to hear about the amazing support offered to mothers and families experiencing the devastating illness.
I would highly recommend this training to any one else who would like to use their own experience of PP to be able to support others going through similar times.
Thank you for giving me this opportunity.”
“Since becoming a Regional Rep in June 2017, I have had various opportunities to interact with mums who have had PP, practitioners interested in increasing awareness of perinatal mental health as well as being able to educate other groups and individuals by talking about my experiences.
As part of this outreach, I contacted the local police training headquarters. A woman suffering from a severe episode of PP may be detained under the mental health act, it could be the Police that are involved with this. I approached the training headquarters to see if APP could provide training for officers to help recognise and understand any signs or symptoms, as well as be able to signpost the family to support. While the training session were too full to include a session on PP, they have included an article on their intranet ensuring that all trainees have access to information and links to APP should they ever come across it.
My experience of PP was while I was living in Brazil and through research on the internet I found APP and its peer support forum on Health Unlocked. My main support, besides my husband, was through the APP peer support forum. There I was able to talk about my experiences and feelings without judgement and was signposted to areas of help.
Last week, I took part in peer support volunteer training and am now an official volunteer on the forum! The day-long training involved discussing online listening skills, the needs of users and skills needed by volunteers. It was a great opportunity to put faces to names, learn more about PP and APP and generally be in the company of some inspiring women! It’s wonderful to be able to offer the support that I found invaluable to others.
As well as volunteering with APP, I also volunteer in my local area with Home-Start, a charity that supports families with children under 5. As part of my training with them I was able to discuss and enlighten the trainees and organisers about PP and APP. Home-Start is an extremely valuable charity supporting families who are struggling with the chaos of having a young family. I know that another Regional Rep was supported by her local Home-Start after her episode of PP. It has been great using my training and experiences from Home-Start with APP and vice versa.
Coming up next month, I will be talking to Institute of Health Visitors at the PMH and Infant MH Champions training in Manchester as part of the lived experience section of their training. This is will be another invaluable opportunity to reach out to professionals in the field.”
Our Peer Support Service is kindly supported by Comic Relief, The Allen Lane Foundation and Rosa, as well as the generosity of individual donors and fundraisers.
APP were delighted to be invited to take part in the Devon Partnership NHS Trust’s ‘I’m Fine’ perinatal mental health training events earlier this year. The three ‘I’m Fine’ training days took place in various locations throughout Devon and Cornwall and were aimed at any front line staff who might come into contact with a women in the perinatal period to understand how to manage people respectfully and assist them; to recognise that when women say ‘I’m fine’ they might not in truth mean this.
Three of APP’s Expert by Experience speakers attended all three events, alongside speakers from other charities including Bluebell and Dads in Mind, to help staff engage and understand why they need to go that extra mile.
Jessie attended the first session in Saltash, Cornwall, she said:
“It was so good to have input to “I’m Fine” as a lived experience speaker. I especially enjoyed the Q&A session, which included good responses and feedback from the delegates, and found it interesting to add tips on treatment and recovery from my own experience. The theatre production was very powerful too. It is so important to show that recovery from PP is possible and to try to make a difference to professionals, and the people they will support in the future.”
Naomi attended the second session at Exeter racecourse and said:
“The I’m Fine SW event in Exeter was a unique and exciting event to be part of. The mixture of forum theatre and group table discussions ensured that lived experience remained at the heart of the event. Friction is a powerful theatre piece, and each time I see it I find that I do get emotional. It revisits some of the very difficult feelings that families experience as they try to seek help for severe perinatal mental illness, and is very raw and powerful.
I enjoyed the opportunity to talk to staff who are often ‘first responders’ in times of crisis – paramedics, the police and crisis team staff. I felt treated as an equal in the room, even with very senior staff, and the facilitators made provision for anyone affected by the themes throughout the day to seek support. The impact of perinatal mental health problems on the developing child was handled sensitively, hopefully and realistically by a speaker from the Institute of Health Visiting, which is so important when you have parents in the room. I thoroughly enjoyed the day, the chance to promote the work of APP through recording a podcast, and the chance to meet other parents.”
And Sally attended the third and final session in Bristol on 30th June, she commented:
“It was a real privilege to be invited to the ‘I’m fine’ event in Bristol in June 2017. The morning session was very powerful. We watched a very relevant and truthful theatre performance about a couple who had recently had a baby and the mother was suffering from postnatal mental illness. The performance was based on real events and conversations with other mothers and families who had been through similar experiences. This gave a particularly accurate account of the events, feelings and thoughts of a family going through this. It was so helpful for the health professionals to see this and to see what goes on ‘behind closed doors’ and provided a valuable forum for discussion about how to talk to a patient experiencing postnatal mental illness.
The afternoon was led by the ‘experts by experience’. There were 3 mothers who described their experience to the delegates, who then chose which mother they wanted to spend an hour with, listening to and asking questions. The conditions included post-natal depression, anxiety and psychosis. As well as telling my story, I was able to answer questions posed by GPs, midwives, health care assistants and those working in the mental health sector. The delegates fed-back to me on the day and told me that not only was this session powerful and moving, but it also gave them an opportunity to ask anything they wanted to about postpartum psychosis. This included questions about the initial symptoms, types of treatments, recovery, my feelings about what happened and my relationship with my daughter. The overall feeling from the day was that the health professionals will remember these personal stories, which will impact on patient care in the future. It was inspiring to see so many health professionals interested and committed to improving antenatal and postnatal mental health care and I am confident that by talking about my experience of postpartum psychosis I have had an impact on shaping the future of these services.”
APP welcomes the findings of the Welsh Government’s Children, Young People and Education Committee Inquiry into Perinatal Mental Healthcare in Wales. The report is released today and can be read in full here.
Dr Jess Heron, Director of APP, says:
“The situation for Welsh families who develop Postpartum Psychosis has been totally inadequate. Mums who become ill in Wales have had to make the decision between being separated from their baby for treatment in a General Adult Unit, where specialist knowledge and appropriate facilities are lacking, or being transferred to a specialist Mother & Baby Unit in England, miles away from their partners, families and support networks. The recommendations made here are a positive step forward for Wales, and give us real optimism for the future.”
APP particularly welcome the following recommendations:
· The Committee find that general adult psychiatric wards are not sufficiently specialist to care for mothers during the perinatal period, and the separation of mother & baby for psychiatric treatment should not be tolerated in a modern health care service. They recommend the establishment of a specialist Mother & Baby Unit (MBU) on the M4 corridor, and a second Welsh MBU in north east Wales, shared with NHS trusts over the border in England.
· The committee report that awareness of perinatal mental health remains poor among the public and health professionals. They recommend that the Welsh Government undertake a public awareness campaign to improve understanding of perinatal mental health conditions and their symptoms. They recommend that antenatal patient information and antenatal classes to include information about the spectrum of postnatal illness.
· The Committee find that frontline staff – including midwives and GPs – feel ill equipped to identify and treat maternal mental illness.
They recommend that the Welsh Government work to ensure that perinatal mental health becomes a core part of the training and continuous professional development of all healthcare professionals likely to come into contact with pre- and post- natal women.
· They find lack of psychological support across all Health Boards in Wales to support women with perinatal mental illness and recommend investment in psychological services and professional training.
· The role of the third sector in identifying gaps in service provision and filling them was clear. More needs to be done to provide funding for and awareness of third sector perinatal mental health organisations and peer support provision.
If you have experienced Postpartum Psychosis, live in Wales, and would like to help APP make a difference for families in Wales, please get in touch: firstname.lastname@example.org
Congratulations to Emily Slater, Director of the Everyone’s Business Campaign, who received a very special invitation to attend Buckingham Palace on Tuesday 10th October, World Mental Health Day.
The Reception, with the Duke and Duchess of Cambridge and Prince Harry, was ‘to acknowledge the contribution of those working in the mental health sector in the UK.’ APP are proud to host the ‘Everyone’s Business’ campaign (funded by Comic Relief) on behalf of the Maternal Mental Health Alliance. The Campaign calls for all women throughout the UK who experience perinatal mental health problems to receive the care they and their families need, wherever and whenever they need it.
“It was a huge honour to represent the MMHA; the personal journey from the terrifying experience of severe postnatal illness (8 years ago) to standing amongst the royals and celebs and amazing activists I met felt hugely poignant and emotive.
Following a speech from William, Stephen Fry spoke and summed up – for me – the atmosphere and significance of the event (to paraphrase): ‘Whatever your politics, having a mental health event being held in this building [Buckingham Palace] is huge cause for celebration – for mental health to be being discussed and championed by the Royal Highnesses helps to bring mental health into the light.’
[You can watch a recording of Stephen Fry’s speech here via Heads Together]
The evening was like none other I have attended before in that every single person I met had had a lived experience of a mental health condition and had gone on to turn this experience into a spring board for positive change. Meeting person after person with inspiring stories, with the backdrop of the palace, and the wonderful example being set by the Heads Together campaign was something I will savour just as much as the opportunity to meet the Royal hosts.”
The Maternal Mental Health Alliance (MMHA) is a coalition of over 80 UK organisations committed to improving the mental health and well-being of women and their children in pregnancy and the first postnatal year.
Last month Jess, Ian and Anna ran the first of our exciting new APP Workforce Training days at St. Ann’s Hospital in North London. These days, commissioned by NHS Trusts from across the county, have been designed to equip medical professionals with an in depth understanding of all aspects of PP. This first group of twenty spanned a broad spectrum of professional roles within the Perinatal Mental Health Service for this area, including Midwives, Social Workers, Health Visitors, Psychologists, Psychiatrists and CPN’s.
Anna kicked off the day by telling her personal story, hearing this first hand experience of PP, took the professionals inside the mind of someone experiencing psychosis and provided them with the opportunity to ask lots of questions about the nature of the illness and the impact it can have on mother, baby, partners and families. Ian then gave a detailed insight in to the clinical features of PP, diagnosis, risk factors, causes, outcomes and public health importance. He shared latest research and answered an array of different questions about both PP and other SMI’s, giving the professionals a unique chance build their individual knowledge.
To ensure professionals went away armed with new ways of thinking about and dealing with the illness, we created three PP case studies for them to consider. These examples highlighted different aspects of the illness and opened up discussions on preconception planning, treatment, recovery, complex cases and the role of professionals.
Jess brought the day to a close by explaining the role of APP in furthering the understanding and awareness of PP and showed the impact the charity has had in the media and at government level with policy change. The attendees were particularly interested in the research that has been conducted, the ways in which the APP forum can provide an empathetic community for women recovering from the illness and said they would go back into the work place feeling more confident in dealing with the illness.
We were delighted with the impact of the day and this first group of twenty, left the day, resolved to do their bit to advance PP care in the perinatal period.
“I enjoyed the broad range of information provided, the way it was presented was excellent and informative. Hearing a real life experience and having a professor present to provide research was very helpful in giving us insight. Thank you all.”
“Today was excellent, it felt up to date, evidence-based and sharing the lived experience was very helpful. There was a nice mix of disciplines and experience in the room.”
‘APP attended the first Annual UK Maternal Mental Health Conference which was a sold-out event, with over 250 people converging on Imperial College, in London on 13th September 2017. I was looking forward to seeing others involved in APP, including our Trustee & Vice Chair of MMHA, Clare Dolman, Regional Rep & Media volunteers Kathryn Grant, Fiona Putnam and Eve Canavan, and those from other organisations involved in Perinatal Mental Health. It was a day full of passion, with so much expertise in the room, and a prestigious line-up of speakers from the UK and beyond.
APP Regional Rep & Media Volunteer Fiona Putnam together with her husband Henry Everitt eloquently and powerfully retold their story of Postpartum Psychosis after the birth of their daughter. Attendees were gripped, equally shocked and saddened to hear the extremes of Fiona’s illness, following a difficult and traumatic pregnancy and birth; this included jumping from a window and fracturing her spine during her illness, and being helped by a paramedic who she had thought was a “handsome actor on Casualty”. The audience smiled and laughed along with her when she recounted the parts of her illness which she can look back on with humour, and the love and support she received from her family and friends. The support she received from a Mother & Baby Unit, after what she described as a scary time on a general psychiatric ward, was vital in her recovery, as was the information and shared experiences she found through APP.
The MMHA Awards, supported by Big Lottery, followed the conference and APP was thrilled to be announced as the Winner of the Perinatal Peer Support Award. With over 100 nominations, it was an honour for me to accept the award on behalf of the team at APP, all of our fantastic volunteers, and the women and families we support. Representing APP is a privilege that I could never have imagined happening when I, like Fiona and so many others, was recovering from PP almost 8 years ago now. I think I had the biggest grin whilst hearing about why we had been nominated from writer & Psychotherapist Susie Orbach, who presented the Awards – and have to admit to responding to others’ cheers with a heartfelt cheer of my own! Thanks to Comic Relief, who fund our vital Peer Support service, we continue to offer support and vital shared experiences to women and families throughout the UK who experience this debilitating illness. Peer Support is just amazing!’
Hannah Bissett – APP Peer Support Co-ordinator
Maternal Mental Health Alliance - Winners of the first perinatal mental health awards 2017
n the 3rd August 2017 Lancashire Care Trust invited a range of stakeholders, including people with lived experience, to a discussion day to work through pathways, priorities and good practice to ensure their new eight-bed perinatal mental health inpatient unit for Cumbria & Lancashire, and the experience of care, as effective as possible for everyone.
APP’s Peer Support Coordinator, Hannah, was delighted to attend alongside Dr Giles Berrisford (APP Chair) and recounts her visit to Preston North End Football Club…
‘It was a rainy, grey day as I drove over to Preston North End football club for the Lancashire Care Trust Perinatal Mental Health (PMH) event – hardly summer weather, but this is the UK after all, and being from Yorkshire, I have to say it was also due to being on the “wrong side” of the Pennines! APP had been invited earlier this year to become involved in the development of one of four new Mother & Baby Units (MBUs), with Lancashire Care Foundation Trust being the provider for a new unit in Chorley. The event was held as a discussion day to work through pathways, priorities, challenges and good practice to make the unit and the experience of care as effective as possible for everyone, so I was really keen to hear more about it and see and hear from other key stakeholders.
I was also really pleased to be meeting two APP volunteers at the event, Jane and Gillian, who both experienced PP and are from the North-West. It was great to be able to link them with other professionals at the event as being some more local contacts for APP – we all left having given our details to be involved in the continued engagement work ahead of the new unit opening in 2018. There were others with lived experience there too and it was nice to be able to give some APP literature to people directly affected, as well as the professionals in the room. We consistently get really good feedback about our peer support and Insider Guides, so it meant a lot to know what a difference it can make. There were also representatives from other voluntary and community organisations and I hope we all did a good job in getting the APP message out. Feedback from the group work in the afternoon particularly mentioned Gillian’s input and how the things she talked about and the support that professionals can give had really impacted on them. Well done Gillian!
The morning was a very full session of speakers, introduced by the Trust’s Chief Executive, who had special dispensation to attend her Board meeting late – such is the priority for PMH and the interest and engagement from all involved. This was also reflected in the number of psychiatrists in attendance, both general and specialist perinatal, as I counted at least 6 from as far afield as the Midlands and Morpeth! Dr Giles Berrisford, Associate National Clinical Director with NHS England (NHSE) for Perinatal Mental Health, and APP’s Chair of Trustees, had been caught in traffic on the M6 so we swapped time-slots and I talked about my experience of PP and my involvement with APP, which seemed to be well received. The social media activity was also great to see, with some really touching comments.
Giles’ presentation about the National Perspective followed, and we also heard from Leeds and Manchester about their services and shared learning about both in-patient and community services, as the new MBU will also offer Outreach. Dr Gillian Strachan, Consultant Psychiatrist with Lancs Care and a current PMH Bursary Holder with NHSE, kept the morning moving to time and we also heard about the development so far of the MBU. There was also an interesting presentation from the architects and designers about their vision for the Chorley MBU, and their engagement with other stakeholders including those with Lived Experience of PMH. The MBU & Outreach will cover Cumbria as well as Lancashire so it was especially valuable to hear about challenges such as travel and rurality, something I know from my experience living in rural North Yorkshire.
Lunch was an opportunity for further networking which everyone seemed to take advantage of; with the room overlooking the football pitch, there was also a few mentions of people feeling that they were being disloyal to their team by being there! The group work in the afternoon, focussing on questions which were approached by people working in different teams, also produced lively discussion and feedback. Before long we were all headed home to various teams, towns and homes in the North-West (and me back to Yorkshire!) with a renewed passion and determination to make sure that women and their families have access to the best PMH care, as locally to them as possible. Thank-you to all at Lancashire Care Trust for having APP as part of your event and we look forward to further involvement and the MBU opening in 2018!
APP’s Director, Dr Jess Heron and North Wales Regional Rep, Sally Wilson attended for APP and Charlotte Harding (who is also APP’s S Wales Rep) attended with Barbara Cunningham on behalf of PMH Cymru.
The aim of the inquiry is to consider how Perinatal Mental Health services are currently provided and how the Welsh Government can improve services for mothers, babies, fathers and families. The Committee wanted to find out how services link together, including specialised perinatal mental health services, maternity services, general adult mental health services, inpatient mother and baby units, parent and infant mental health services, health visiting, clinical psychology, and midwifery services, GPs and the extended primary care team, role of the third sector and local support groups, and private providers of services.
Jess and Sally explained the critical need for a Mother & Baby Unit in Wales. They gave evidence about the importance of high quality training in PP for all health and social care professionals that come into contact with pregnant and postnatal women. They explained to the committee the importance of peer support to women and families affected by PP, and outlined how this could be provided in Wales.
In June we were able to train 8 new Peer Support Volunteers. It is amazing to have the new volunteers up and running to ensure our Peer Support Service can continue meeting demand from mums and families affected by PP, both on the PPTalk forum, and in 1:1 messaging.
It was a wonderful day and really special to be together as women who have had PP and share our experiences. Three of our newly trained Peer Support Volunteers told us how they felt about the training day.
Kat: Since the training, I’ve felt empowered and supported to provide responses on the online help forum, and to take on my very first “one to one” email support case. It’s not always easy. Sometimes peoples’ problems seem more complex than *just* PP. And of course everyone’s experience differs wildly. But there is always a way to empathise and reach out to others through our shared experience. And it is incredibly worthwhile and satisfying work. I’m really grateful for the opportunity to support others through this illness. When I was dreadfully ill myself my husband found the APP forum and received amazing support through it: practical, empathic, specialised and ongoing for many months. And now I can start doing the same for others – as a family, we have come “full circle”!
Claire: It was really amazing to meet and spend a whole day training alongside other women who have suffered Postpartum Psychosis and to join an online community of peer supporters who are rallying together to transform their individual traumatic experiences into something positive for other people. I feel confident after the training that I know how to look after myself whilst being able to provide some lived experience advice and support to those who ask for it. I feel very honoured to have been given this training and I hope to provide the kind of help I needed at my worst point of the illness.
Sabine: The reasons for my motivation in taking part in the ‘Peer Support Training’ I guess are multi-layered, unique and personal, – in a way signifying a milestone of where I have been and where I am today.
I definitively wanted to feel more reassured and cushioned when responding to mums and family members on the forum. When joining the APP forum I did not feel on my own anymore; the numbness inside me had vanished, – the lid was opened and I was able to talk to compassionate and kind ladies on the forum.
Now there is a ‘SENSE OF BELONGING’, since meeting those very special women, not only the ones who organised the workshop, but the 7 other newcomers, who wanted to become volunteers. I feel happy, because my story is out there and shared by other females. I feel as if I have a voice. I have been able to tackle London and met some wonderful women, who were strangers to me.
I would like to thank APP and everybody involved for the location and choice of venue, the participation and contribution of workshop members, ‘the individual and special support’ before and during the event, enabling and creating a positive and relaxed atmosphere, but especially the superbly organised and very professionally-led workshop by Jess, Clare, Hannah, Ellie & Amy.
Our Peer Support Service is kindly supported by Comic Relief, The Allen Lane Foundation and the generosity of individual donors and fundraisers.
APP’s Expert by Experience sessions continue to be sought after and our partnership with Institute of Health Visiting (iHV) saw 4 further sessions after the successful pilot in Hull earlier in the year.
During Maternal Mental Health Awareness week, the Institute announced the collaboration, which aims to ensure that the APP voice is central to their training:
“Women, who are experts by experience from APP, deliver on the iHV Perinatal Mental Health (PMH) programmes so all the health and social care professionals we train understand what they need to do to best support women and their families”.
We are very grateful to all who staged an event, including Benedicte Waaler (top left), Tutbury Community Choir (bottom right), York Light Orchestra (top right), Ripon Community Orchestra (bottom left), Bradford Midwives, Fishergate Primary School and Burgess Hill School. You can find out more about the events on our Fundraising News page.
We are also very grateful to our team and volunteers who worked so hard to promote and support the initiative, shout out to Hannah, Ellie, Kat, Emma, Heather and many others.
Maternal Mental Health Awareness Week, promoted by the PMH Partnership and featuring the hashtag #MaternalMHMatters, created a lot of interest on social media during the first week of May, closely followed by Mental Health Awareness Week after this. #MHAW2017 featured heavily on Twitter and it was great to see more conversations about mental health and PP.
Media activity in this time was also high, including a Radio 4 interview with Hannah B about her PP experience and a Daily Mail feature on Hannah F; go to our media page for the latest news, including International Day of the Midwife which also fell in early May and was supported by midwives in Bradford.
Peer Support & Regional Reps Co-ordinator Hannah also attended an IDM2017 event in Darlington, hosted by the Co Durham & Darlington Trust. Amongst speakers including Baroness Cumberlege, who mentioned the need for improved perinatal mental health care as part of the Better Births review, and national and regional figures from Royal College of Midwives and others, Hannah shared her experience of PP and the changes in the PMH landscape in recent years. She also managed to give APP Guides to the Baroness!
The verdict from the inquest into the death of Alice Gibson-Watt makes for difficult reading and our thoughts and hearts are with the Gibson-Watt family at this dreadful time.
Postpartum Psychosis is a shocking and severe illness and much more must be done to prevent such tragedies. More research is needed to understand the causes; more must be done to inform and support families; more awareness, high quality training, more funding, more compassion and understanding is needed.
The BBC spoke to Anthony, the widower of Alice Gibson-Watt. He said “I had no idea about postpartum psychosis”. Watch here.
We thank Alice’s friends, family, and workplaces for their support of APP in memory of Alice, raising funds to help us provide information, peer support, training, conduct research, campaign for better awareness, understanding, and specialist services for all who need it.
Our volunteers feel this loss terribly. Many know that this story could also have been theirs. We are passionately committed to working in all the areas needed to prevent tragedies occurring caused by this severe, distressing, but treatable postpartum mental illness, which affects around 1-2 in every 1000 families after childbirth. For most women and families, the outcome is positive and families recover, but the reality is that mental illness and suicide are still a leading cause of maternal death.
Our thoughts and hearts are with the Gibson-Watt family through this dreadful time.
Postpartum Psychosis is a shocking and severe illness and much more must be done to prevent such tragedies. More research is needed to understand the causes; more must be done to inform and support families; more awareness, high quality training and compassion is needed.
We thank Alice’s closest friend Katie, Alice’s family, Sotheby’s and the Antiques Roadshow for their support of APP in memory of Alice, raising funds to help us provide information, peer support, conduct research, campaign for better awareness, understanding, and specialist services for all that need it.
We wish things for Alice’s daughter could be different. Our volunteers feel this loss terribly. Many know that this story could have been theirs. We are passionately committed to working in all the areas needed to prevent tragedies occurring caused by this severe, distressing, but treatable postpartum mental illness, which affects around 1-2 in every 1000 families after childbirth. For most women and families, the outcome is positive and families recover, but the reality is that mental illness and suicide are still a leading cause of maternal death.
If you would like to support APP, please donate to support Katie in her London Marathon attempt in memory of Alice – you can read her story here.
We are grateful that the BBC News report on Alice’s inquest links to APP
Hannah Bissett, Peer Support and Regional Reps Coordinator, tells us about a busy start to the year up north.
2017 so far has seen a real spike of APP involvement in the north, or so it feels! After a joint training session for an Early Intervention Team in Wallasey, Merseyside with Emma Odell in February, Emma has also been busy with 2 sessions with Manchester University. She has also made a link with the Greater Manchester & Eastern Cheshire Clinical Network, filming a patient experience video ahead of a conference in June. I have also travelled across to film for this and we are both really looking forward to seeing the final cut. The Network are really interested in linking further with APP in the future – watch this space…
This month I have also been to Hull, not once but twice. The first was on 10th March to contribute to the Institute of Health Visitors PMH Champions training, with Melita Walker. We are hoping that this will lead to further collaboration with iHV, to share further PP stories through Expert by Experience talks. The second visit to Hull was on 24th March, as part of a 2-day PMH conference held by the University of Hull & Humber NHS Foundation Trust. I had an APP stand and presented my experience of PP as part of the second day. Both were well received and further links made – perhaps even for a third trip to Hull in the not too distant future. Well, it is the European City of Culture 2017!!
My link with Leeds MBU led to a session as part of training for their team on 16th March, together with staff who will be working on a new community perinatal team in Bradford. As one of the areas recently successful in phase 1 of the NHS England community funding, Leeds are “buddying” Bradford in designing and training for their service. It was also good to talk to the staff there about the Yorkshire & Humber Outreach service, which launched a year ago in March 2016, and possible gaps in the Y&H area where we could do further joint work to reach other maternity and general mental health teams.
I have also been linking in with others around the country who are doing Regional Rep things for APP or are interested in getting involved, including Sally Wilson whose recent BBC Eye on Wales programme was such a powerful story, and well received.
Now I’m officially in post I am looking forward to catching up properly with all the other Regional Reps, to hear about how APP is raising awareness and working with services in their areas. If you are interested in being a Regional Rep for APP, drop me a line: email@example.com
Looking ahead, I will be returning to County Durham & Darlington’s International Day of the Midwife in early May, and dropping in on the way home to “Hope” at Edge Bar, Stockton, a series of events to coincide with the Maternal Mental Health Awareness week, run by a local PMH group www.raindropstorainbows.co.uk.
May also sees APP’s Music4Mums to coincide with World Maternal Mental Health Day on 3rd May. One of the events planned is with my local community orchestra in Ripon; I might even be persuaded to play, but need to get my cello in working order, as I’m very rusty these days! More here on how you can be involved: https://www.app-network.org/m4mums
Things are going well with our Peer Support project.
The Comic Relief grant started at the beginning of March which means that Ellie and Hannah are now employed 2 days a week to manage and develop the Peer Support Project.
Our online peer support forum continues to have many active members. We also co-hosted a PND Hour twitter chat on 1st March about postpartum psychosis, which went really well. It was amazing to have so many courageous women together talking so publicly about their experience of PP.
We have started planning our training for new Peer Support Volunteers which will take place in June. We have a list of people who are interested in being peer supporters. They include people who are already contributing a lot to our online forum, and also several people who have accessed our one to one peer support, so have lived experience of being supported themselves.
Ellie has begun developing a pilot face to face peer support group for women who have had PP who live in Sussex. Ellie is collaborating particularly with the Sussex Early Intervention in Psychosis team and Ellie and two women who have had Postpartum Psychosis have met two times already. The meetings are very informal. We also have more women who are interested in joining the group so it looks likely to grow. This is a really exciting development in our Peer Support Project and we hope to facilitate more face to face peer support in two other areas of the UK, yet to be decided.
Ellie, Hannah and Jess are busy developing the project plan as well as putting monitoring and evaluation in place for Comic Relief. We are also submitting another application to the Big Lottery, in an attempt to secure further funding for this vital work.
APP’s regional rep for London, Kathryn, recounts a very special day at the launch of Best Beginning’s “Out of the Blue” film package.
“Wednesday’s terrorist attack on Westminster horrified us all. But the work of mental health campaigners goes on: we will not be stopped by extremists. And neither, it turns out, will the Duchess of Cambridge.
As I watched events unfold on the news the night before I was sure that, after weeks of anticipation, the Best Beginnings event would be cancelled. Surely security concerns would keep the Royals safely inside Kensington Palace? But no. The show went on and as a community of perinatal mental health campaigners we focused our attention firmly on the future.
We had been invited to attend the launch of Best Beginning’s “Out Of The Blue” film series. They had recently partnered with the Heads Together charity, set up by Princes William and Harry and the Duchess. It promised to be an auspicious event.
I had first gotten involved with the project over two years ago now. I had agreed to contribute to the films about severe postpartum mental illness, and Mother and Baby Units. With my son (who was only around two years old at the time), I spent several hours being interviewed on camera for the films, and captured revisiting the Unit where we spent the first three months of James’ life. The subsequent editing and producing seemed to take months (if not years!) and so by the time my launch invite arrived I had almost forgotten about our contribution. In the intervening period I had suffered relapses of bipolar depression, recovered again, learned a lot about my own mental health, trained as a Mental Health First Aid instructor, and spent two long secondments with my family in the Cayman Islands.
The gathering at the Royal College of Obstetricians & Gynaecologists beautiful Regents Park headquarters was full of perinatal mental health professionals, charity workers and families with lived experience. And I (and the many other contributors) felt like a minor celebrity, as everyone seemed to know who I was from having seen the films! It was great to meet many of the other participants and their families: we came from all walks of life, and all over the country. Our experiences covered the wide spectrum of perinatal mental illness: anxiety, PTSD, antenatal and postnatal depression, and of course postpartum psychosis.
Seven of us (along with two partners) had been asked to take part in a special support group setting. After the Duchess’s speech in the Auditorium she joined us for half an hour to hear our stories and ask questions. Like any support group we were all there first and foremost as parents and that included the Duchess. We supported each other to tell our individual stories and by the time HRH arrived we were in full swing. Albeit joined by several TV cameras, photographers, journalists, and Personal Assistants!
I was asked to speak first. Having been warned to keep things brief I gave a short synopsis of what happened to me and James, to culminate in our admission to the Bethlem MBU. I managed to impress upon her the importance of such specialist, high quality, psychiatric care. And how I was one of the lucky ones in the postcode lottery: I had access to this specialist care and a local MBU bed. Asides from this intensive psychiatric care, the second part of my recovery, I explained, was about “owning” my illness and being able to talk about it with friends and family. I had the chance to tell the Duchess how pleased I was that she and her family had started the Heads Together campaign. With such powerful voices, they will do a lot to reduce mental illness stigma and get people talking about their own mental health.
With a final photo call and a hastily-arranged interview with a Daily Mail journalist the official day was over. Social media had set my phone alight: but it was all worth it to have given postpartum psychosis a royal audience, and to have helped make a package of films that will educate healthcare professionals and new families for years to come.”
On Red Nose Day 2017, we’re thrilled to announce that Comic Relief have awarded APP a grant of £120,000 to part-fund our peer support service from 1 March for 30 months.
This will fund paid time for our Peer Support Coordinators and workshops to train new Peer Support Volunteers.
We are delighted with this news but it’s only one part of the funding jigsaw. We are working on a new application to the Big Lottery, alongside other Trusts & Foundations. Our new health professional training, with lived experience speakers, will help raise extra cash and we have events planned throughout the year starting with Music 4 Mums around World Maternal Mental Health day.
Your support continues to be vital, allowing us to help women & families, whilst we secure further funding. It has been a powerful way to demonstrate to funders the need for our charity and the commitment of our supporters.
Thank you and a big THANK YOU to Comic Relief. Please enjoy Red Nose Day and don’t forget to donate!
The Foundation funds small charities and organisations and aims to fund work which:
- will make a lasting difference to people’s lives rather than simply alleviating the symptoms or current problems
- is aimed at reducing isolation, stigma and discrimination, and
- encourages or enables unpopular groups to share in the life of the whole community
Specifically, the grant will fund a Peer Support Volunteer training workshop and additional paid hours for Peer Support Coordinators over the next 12 months, to enhance the sustainability of the service.
We are very grateful to the Trustees of the Allen Lane Foundation for supporting our vital work. Find out more about the Foundation at their website.
APP volunteer, Sally and her husband Jamie bravely shared their story in an extraordinarily moving BBC Radio Wales Eye on Wales episode about Postpartum Psychosis.
Our Trustee, Professor Ian Jones also features, explaining the condition and talking about the need for a Mother & Baby Unit in Wales. APP Peer Support Volunteer Anna, who supported Sally during her recovery, talks about our online PPTalk forum and 1:1 support.
We are so grateful to Sally and Jamie, Ian, Anna, Kayley Thomas and the Eye On Wales team for producing such a brave, sensitive and powerful broadcast.
APP’s Peer Supporters and Volunteers hosted an hour-long chat on Twitter for Time To Talk day on 2 February 2017 around people’s experience of stigma. The hour flew past, with lots of contributions and lively chat from different perspectives. We’ve gathered the best of the Tweets into this Storify and juggled them under topics to try and give a linear narrative. Enjoy, and please don’t hesitate to share your thoughts and comments on Twitter with us @ActiononPP.
The Treasurer will oversee the work of the Accountant and Book-keeper in partnership with the Director. They will be able to communicate the financial position to the other trustees and assist the organisation with risk management, forward planning. They will help create budgets for funding applications.
We also wish for the Treasurer to be a key player on our Trustee Board and interested in helping assist our organisation through a period of change and growth.
This is a volunteer role. Ideally we would like the Treasurer to be able to commit 1-2 days a month of their time for APP work and to be responsive on email. Our team is distributed across the UK so phone and Skype meetings are important. In addition, board meetings are held quarterly in January, April, July and October in Birmingham.
If you think you might be able to help us, please get in touch. Send us your CV and tell us a bit about yourself: firstname.lastname@example.org
Download the role description here.
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Katie is running in memory of her dear friend Alice Gibson-Watt who passed away following complications connected with Postpartum Psychosis. Her daughter, Chiara, was five weeks old. Here’s her story, in her own words:
“I am a 37 year old Mother of a little boy and until 2012 I had no knowledge or awareness of Postpartum Psychosis. Despite being given information on Post Natal Depression during my pregnancy no one seemed to mention or discuss the possibility of this sudden and severe condition.
Alice and I had been friends since we were little. She was in fact my oldest friend, an unwavering constant in my life as we grew up together, and it was with much excitement that we awaited the birth of her daughter, Chiara in October 2012. I had given birth a year earlier and couldn’t wait to share the experience of Motherhood with her, as I had all the other important moments in our lives from travelling around the world to planning our weddings. Whilst I tentatively warned her about the need to rest and the impact of sleep deprivation, I never dreamt to mention post natal depression nor did I even know about the possibility of postnatal psychosis.
Four weeks after her daughter was born, Alice suffered a psychotic episode and further complications led to her passing away a week later leaving behind her devastated family, friends and a daughter who will never truly know just how wonderful her Mother was.
There is nothing positive about this situation or this mental illness. It is vicious, cruel and deeply unjust. On the morning I was told that Alice, my bright, beautiful, determined friend who had fought so hard to become a Mother, was in hospital with a bleak prognosis I felt an overwhelming urge to run. Running has a meditative quality that I discovered in my late 20s and I think has been essential to my own mental stability in times of stress. And so I ran that day trying to tell myself if would be OK. Unfortunately for Alice and those close to her; it was not.
However, in the spirit of Alice’s unquestionable strength and positivity, it is so important to remember that there is much to be done to ensure other families do not suffer in the same way. To this end, I am hugely honoured to be running the London Marathon for APP. The work they do to publicise, support and educate is vital to prevent further devastating losses and to provide essential life lines to sufferers and their families.
I will run in Alice’s name and all those who have suffered from this unjust and frightening condition.”
You can support Katie’s training and fundraising at her Virgin Money Giving page and save the date! The London Marathon is on 23rd April 2017 and we want as many APP supporters to be there to cheer her on as possible.
Professor Ian Jones and Val from APP discuss PP and menopausal relapse with Jenni Murray on today’s Woman’s Hour on BBC Radio 4. Listen again here on iPlayer.
The long-term outlook after an episode of PP tends to be very good and women recover fully. However, some women who have had PP will have further episodes of illness unrelated to childbirth.
Just over half of women with Postpartum Psychosis will experience an episode of depression, bipolar disorder or related illness at some point in their lifetime. (This estimate includes women with and without experience of mental illness before their PP episode, and so the risk may be lower for women whose PP episode was ‘out of the blue’.) For more information see our research on recurrence rates or view to our survey of recovery in APP members.
It has been suggested that some women who experience PP may be vulnerable to relapse at times of major hormonal fluctuation, such as during the perimenopause (the time from the onset of menopausal symptoms, such as hot flushes and irregular periods, until the menopause itself).
A case series review of post-menopausal women with a history of PP, found that 30% reported an episode of illness (including depression or mania/psychosis) during the perimenopause. Strikingly, most women who relapsed during the perimenopause had been well during the years in between childbirth and the menopause. Further studies are needed to explore this potential risk period more fully and identify which women might be at risk of perimenopausal relapse. Women, their partners and families should be vigilant for signs of relapse during the perimenopause and seek help from their GP or mental health team should symptoms develop. For more information about relapse planning, see page 14 of our Insider Guide on Recovery after PP.
APP is here to support women and families who suffer illness episodes following their PP, no matter how many years have elapsed since the PP episode. If you would like to talk to others with similar experiences and concerns, please visit our peer support forum or request email support. We are campaigning and conducting research to improve understanding of this illness. If you would like to help us, or to find out more about current studies, please get in touch.
It was amazing to be at the House of Commons last week for the #HopeDec09 event, organised by obstetrician, Raja Gangopadhay, and attended by around 150 others with an interest, passion or professional role in perinatal mental health.
APP’s Chair, Giles Berrisford, opened proceedings in his role of Associate National Clinical Director PMH, reporting that things do seem to be changing and there is more awareness and profile than ever before, but of course, there is so much more to do.
It is always inspiring to hear Alain Gregoire of the MMHA speak and his words about maternal mental health and its far-reaching consequences being “the most important issue for humanity today” was really great to hear.
I wish there had been more time to talk about APP and the amazing peer support it offers, together with our pilot Regional Reps work to spread awareness of the organisation and that PP can affect anyone, as it did me. This slide said a lot for me: “Full Recovery is Possible. Please seek help early. No-one is immune.”
The event focused on the importance of addressing mental health conditions during pregnancy and beyond and we heard from a diverse range of those with “lived experience” – it is so important to share these stories. PP and schizophrenia were powerfully presented by artist, Sanchita Islam and PND movingly by Lindsay Robinson of haveyouseenthatgirl.com and Mark Williams of Fathers Reaching Out Wales.
Antoinette Sandbach MP also had a number of people in tears as she spoke emotively about her experience of bereavement and the effect that this can have on women and families. The heads that nodded along (including my own), as if to say “me too” at various times during all of the speeches was really amazing to see.
It was fantastic that the whole of the UK and beyond was represented in the room, with people standing up to talk about changes in Scotland and the ongoing campaign for a Mother & Baby Unit in Wales. Lindsay had also spoken of changes she is working towards in Northern Ireland. As a proud Yorkshire lass, I enjoyed meeting up with others from the north – it is sometimes easy for us to be forgotten in the blur of all things perinatal and activity that naturally often centres on London and the other big cities. I had great conversations with another peer support organisation Raindrops to Rainbows, who are based in the north-east and supporting women and families affected by PND, so there may be ways for us to link in in the future. Our chats continued on the train north at the end of a long, exciting and inspirational day.
Words from representatives of the Royal Colleges of GPs and Midwives together with a former Royal Obstetrician and a response from the Duchess of Cornwall which was read to the room showed that the event had a really high profile. Together with those from the media and a range of organisations I hope that this really gave the event some clout to effect real change. I hear that it trended on Twitter throughout the day – surely the mark of success!
Hannah Bissett is APP’s Assistant Peer Support Coordinator.
Sussex is one of 20 areas across the country which will benefit from funding to improve care for pregnant women and new mums experiencing, or at risk of experiencing, mental health difficulties.
The Executive Group is intended to be the “driving vehicle for the perinatal mental health programme of work” and oversee delivery of outcomes. In other words, make sure that change happens and services improve. Ellie says:
Fantastic recognition for the good work APP does!
APP Director, Dr Jess Heron, was invited to 10 Downing Street to attend a reception of small charities across the UK that make a big difference to people’s lives.
The government recognises that the economic climate is hard for small charities and has pledged to find ways to help small charities doing good work become sustainable.
Dr Heron said “It’s fantastic for our work and the amazing dedication of our volunteers to be recognised in this way. We know that we save lives and that we have caused a sea-change in public interest and understanding of PP, but it’s great when it’s recognised by others”
A big thank you to the staff from the Mother and Baby unit at the Bethlem Royal Hospital who are in training for the Hampton Court half marathon in February 2017 and raising money for APP. They say:
“Working on a Mother and Baby unit, we are all very aware of the illness postpartum psychosis, as well as many other illnesses relating to women during pregnancy and after giving birth. We want to raise money for the amazing charity APP and support their work as well as raise awareness around mental health during pregnancy and after having a baby.”
They have recently had a very successful cake sale to help towards reaching their fundraising target and have emailed us an update on their endeavours:
“Just wanted to share some photos with you from our cake sale. The fundraising is going well, so far we have raised nearly £500! We are planning to do a raffle for Christmas and of course sharing our JustGiving page for people to sponsor us for the half marathon.”
You can support this wonderful team of people at their JustGiving fundraising page here.
On 30th Nov Dr Jess Heron, Director of APP was asked to speak on Radio Wiltshire’s Breakfast programme. She was asked to respond to the news that Wiltshire mum, Holly York, said that the NHS let her down after she gave birth and was suffering from extreme Postpartum Psychosis.
Jess took the opportunity to explain more about Postpartum Psychosis and to comment on its current status within the field of perinatal mental health. In addition she made an appeal for continued support of APP charity as a consequence upon the ending of major funding by The Big Lottery.
The Marce Society was founded in 1980 by Professor Ian Brockington (also founder of APP’s research network). The Society promotes research into the mental health of women, their infants, and partners around the time of childbirth, and the Marce Society’s biennial conference plays host to the most cutting edge international research in Perinatal Mental Health. Dr Sue Smith, Consultant Perinatal Psychiatrist, Cardiff, first attended the Conference in 1996. She reports for APP on the differences she has noticed between then and now.
On returning from the Marcé biennial meeting in Melbourne in September I was keen to consolidate the copious notes I had made and summarise what I had learnt. Digging around in my office I found that I had done a similar exercise after attending my first Marcé meeting in London in 1996. I was struck by the similarities between what was presented and discussed then and what was still on the agenda 20 years later.
However what has changed is the number of people who are talking about perinatal mental health, the increased multidisciplinary aspect of the membership of the Marcé, the input from women with lived experience and the ‘women power’ represented by the number of recent female presidents!
It is probably fair to say that in 1996 perinatal mental health services were regarded as something of a luxury. Twenty years on despite still trying to understand the biological underpinnings of peripartum mood disorder (and I left scratching my head after some of these talks!) the absence of a service is now more of a talking point than the presence of one. In the UK the tireless work of the Maternal Mental Health Alliance has highlighted the areas where services are lacking – and the hope is that its launch globally, announced at the conference by Alain Gregoire, will achieve similar things on a worldwide scale.
Accepting that for many countries services are limited and that those attending Marcé are likely to be people from places where services are developing or have developed, it is still impressive that I heard many inspirational talks from various parts of the world including Australia, New Zealand, Canada, USA, Portugal, Scandinavia, France, Malaysia, Bangalore and of course the UK.
A major theme throughout the conference was the importance of pregnancy and within this a particularly fascinating talk was given by Rachel Yehuda from the USA. Her work on holocaust survivors may have demonstrated that psychological difficulties in their offspring could be related to preconception effects of trauma, passed on at conception and further developed during pregnancy.
The concept “It takes a village to raise a child” was a lovely way of introducing a number of talks about how in western societies the role of the family and wider social networks in supporting women in the postnatal period has largely been lost. The challenge is how to replicate this sensitively within the networks of professionals women now encounter in the perinatal period.
There were a number of presentations about fathers and the importance of acknowledging their part in it all. It was interesting to hear about a service where dads were texted daily to ask how they were. It also reminded them to complement their wives/ partners who appreciated this even though they knew they had needed prompting to do it! It was great to see Mark Williams from Wales talk passionately about his experience when his wife suffered severe postnatal depression – though I think his “by ‘ere” may have confused some people!
On the theme of decision making about and within pregnancy, it was great to hear Claire Dolman talking about the dilemmas of pregnancy in bipolar disorder and the recent BJPsych open article she did with Ian Jones and Louise Howard.
Simone Vigod from Toronto talked about a decision aid they are developing regards taking antidepressants during pregnancy. Initial results did not demonstrate a great reduction in decisional conflict but with some refinement this could be a very useful tool.
It is very unusual to see a drug company representative at a perinatal meeting but Sage Therapeutics from the USA bucked this trend by presenting their very early but potentially exciting research using allopregnanolone, a metabolite of progesterone, for postnatal depression. It is early days but initial results were promising so watch this space!
It wasn’t all hard work – the Gala Dinner was followed by us being taught how to do Bollywood dancing in advance of the next meeting in Bangalore – some of you may recognise who is getting into the swing of it all!
My take home messages were
- pregnancy is a very important time
- more research is still needed regards the biological underpinnings of peripartum mood disorders as every answer we get provokes another question
- remember the dads
- a lot of people care about this field including those with the power to do something about it i.e those with the purse strings – so we have to keep nagging!
- roll on Bangalore 2018
Men’s experiences of having a partner who requires Mother and Baby Unit admission for first episode postpartum psychosis.
Perinatal mental health services and organisations such as APP are becoming increasingly aware of the need to support and involve partners of women who have experienced postpartum psychosis (PP). However, there has previously been little academic research into the needs of partners during this time. A recent study has focused on the experiences of seven men whilst their partner and baby were admitted to a Mother and Baby Unit (MBU) for treatment of PP. The author of the paper has written a piece for APP to tell us more about the findings of the study and how this could affect how services work with partners in future.
Research has told us that PP can have a life changing impact on women’s experiences of motherhood, relationships and sense of self. Their partners also often need to adjust to understanding the condition and support recovery. Perhaps understandably, the vast majority of perinatal health research and clinical practice has previously been focussed on the wellbeing of the mother and baby. Whilst dads are being increasingly recognised it is often in their capacity as a partner who is supporting the mother, rather than as a person in their own right. In the research, it remains unclear how dads are affected by the severe and sudden nature of PP and by the separation from their partner and baby during their admission to an MBU. This study aimed to explore dads’ experiences of early fatherhood and relationships during their partner’s admission for their first episode of PP, to help improve our understanding of their needs and how services can work with families during this difficult time.
How was the study conducted?
Seven fathers were recruited from two UK MBUs. For all participants, this was their first child with their partner. All of the men’s partners were inpatients on an MBU at the time of being recruited but were nearing discharge after having some periods of home leave. The men took part in interviews, which were analysed using an approach which focuses on making sense of how people understand their individual experiences.
What were the main findings?
The participants’ stories reflected the natural uncertainty surrounding the birth of a child, which was amplified by the unexpected onset of a severe mental health problem. There were two main themes within these fathers’ stories which are detailed below and illustrated with quotes from the interviews. All names used are pseudonyms to protect the participants’ anonymity.
Main theme 1: What the f**k is going on?
This theme reflects the lack of understanding surrounding PP and its treatment. Frustration and anger were common, perhaps due to feeling helpless, loss of control and fearful. Most men found it difficult to recognise the early stages of PP, as they were not sure what is normal for a new mother. For most, this was their first child and their first direct experience of a mental health difficulty.
I… didn’t really see the… signs because A. I’m not experienced in them and B. I knew there was something up but I put it down to her being absolutely over exhausted. (James)
As symptoms progressed to the more acute stages, men expressed a range of emotions such as shock, confusion and embarrassment. Experiences of seeking professional help were varied. Health professionals (e.g. GP’s or A&E staff) didn’t always know about PP which sometimes led to a delay in treatment and frustration for partners. Most of the participants didn’t know what PP was when the diagnosis was first given, although having a name for their partner’s difficulties often seemed to give some sense of understanding and hope. Some found the internet useful for finding more information, including personal stories from other families on the APP website.
At the time, if I remember rightly, I didn’t even hear the postpartum… it was just psychosis… So I didn’t even relate it to any giving birth…. It was just, my wife’s gone psychotic. (Neil)
Following diagnosis, all participants wanted to be involved in their partner’s care; however not feeling heard or valued by professionals was common. Many felt their concerns were dismissed and not taken seriously. There was lots of frustration with confidentiality procedures and the priority seemed to be on mother and baby, not dads. Some were comfortable in challenging this and asking for information, others were less so. When done well, information sharing and involvement helped dads’ understanding of what was happening for their partner.
For the first five days, all I got was, ‘you’re not married, your son’s not registered, you’ve got no right to know where they are or what’s going on’. And that’s all I got, from everybody. So all I knew was, my son had disappeared, my girlfriend had disappeared. (Tim)
I think I might have got on the doctor’s nerves a little bit. Because [the doctor] was…
like, ‘well, this is about me and your partner’, but obviously [my partner]… might not
even think of the questions that I think of. (Neil)
Main theme 2: Time to figure out how your family works
This theme captures the impact of PP on the roles, relationships and identity within the family.
Most participants felt more responsibility to care for both their partner and baby as PP symptoms progressed. Many dads felt pushed to their coping limits and appreciated help from family and friends. Some women were first admitted to general inpatient units which were not felt to be very helpful or appropriate. MBU admission was usually a relief and gave permission for dads to look after themselves. Many trusted the MBU staffs’ expertise and saw it as an opportunity for learning and growth. However, handing over caring responsibility was difficult for some.
We were doing the right thing… It was a relief that somebody else was going to look after her and the medication…. I could come in, give her… all my attention for… a few hours in the morning, a few in the afternoon, a few in the night… And I knew the baby was being taken care of. But then I’d go back and have time to… recharge my batteries. (Michael)
Most dads felt a huge loss for their relationship and partner during this time. Many felt alone; the shared experience of starting a family with their partner had taken very separate paths. Some went through a grieving process as their partner’s identity seemed to have been changed by PP. For others PP was seen as something external ‘taking over’ their partner.
She was here but I thought her personality was dead, so my relationship with her personality is dead … My personality clicks with her personality, yeah and if she’s not there… our relationship isn’t there… it felt like she was dead. So when I was at home I felt like I was single. I felt like I’d lost everything. (Ashley)
Men tended to feel less loss around the separation from their child; this relationship was often seen as more stable and positive. Many had started to reconnect with their partner as they started to recover, but the long-term impact was unclear. Most did not want more children because of future risk of PP.
It’s just not worth… the risk… to my partner. And obviously the baby would be there as well. That’s… one of my concerns… she might never have a brother or sister… I’ve got a brother and he’s my best mate… My child won’t have that and I feel guilty about that, for her. But… I just don’t think, well, at this point in time anyway, that it would be an option. (Michael)
PP delayed adjustment to being a family, which was often made worse by large distances between home and the MBU. There were lost opportunities to do ‘normal’ activities with the baby and some expectations of parenthood were not met.
You feel, a bit deflated…. Because you’ve got two weeks off from work, you have all these plans to do these great things and bed down and suddenly that two weeks is gone. Because you’re in hospital. And then you… need to go back to work but we haven’t had time to bond at home. (Neil)
For some it was hard to parent the way they wanted to on the MBU but others had more positive experiences. Some were worried about how family life would be when returning home, whilst others saw their family as ‘back to normal’ already.
I don’t want to say it’s made us grow up… but I suppose it has… It’s made us… become my parents… It’s a different life to the one we’d sort of planned, even while she was pregnant. (Matthew)
Recommendations from the research
Whilst only a small number of experiences were reported in this study, some recommendations can be made to try to improve future practice and research in this increasingly important area:
- Improved awareness of PP is needed, for both health professionals and the public, to allow faster diagnosis, access to the right treatment and less stigma around the condition.
- Improved access to MBUs is needed. In this study, general mental health services were not viewed as appropriate by dads (previous research has found women feel the same). Many men had to travel large distances to visit their family due to the lack of availability of local units, which created increased stress, separation and financial pressures.
- Health services need to improve how they work together with fathers. Many felt excluded from their partner and baby’s care, causing more frustration and confusion.
- The timing and type of support services offer to fathers should be considered; even if men say ‘no’ once they might need help in future. Many of the participants reported not feeling ready to talk about what was happening until the time was right for them.
- Sometimes services do get it right! Most men had positive experiences of MBUs and saw them as a valuable resource which helped their partner’s recovery and their own ability to support their family.
- The sample of participants was limited; more research is needed with partners with different backgrounds and family structures (e.g. different cultures, families with multiple children).
The researchers would like to thank all of the men who took part in the study and their partners for consenting to this at a challenging and emotional time for their families. Thanks also go to the staff teams at the MBUs who helped in recruiting for the study.
The shortlist for this year’s Mind Media Awards features four powerfully told stories of postpartum psychosis. They are:
- BBC One documentary, My Baby, Psychosis and Me, which aired in February this year.
- BBC Radio 4′s The Listening Project on Postpartum Psychosis.
- BBC One Eastenders, Stacey Branning postpartum psychosis storyline that APP collaborated on with Mind and Bipolar UK.
- The Sun Fabulous Magazine article, “Having a baby made me psychotic” featuring APP media volunteer, Kathryn.
Mind’s CEO, Paul Farmer said, “The media we consume, whether through TV documentaries, print news, digital blogs, radio or film, has a huge impact on people’s attitudes towards mental health problems.”
We believe that all four of these sensitively told PP stories go some way to raise awareness of the symptoms, help reduce the stigma surrounding this mental illness and help those who develop Postpartum Psychosis get diagnosed and treated more quickly.
The winners will be announced on 14th November.
Congratulations to APP trustee Clare Dolman who has been invited to take part in the development of a national ten-year strategy for mental health research.
The recently published Five Year Forward View for Mental Health recommended that the Department of Health, working with others, should set out a ten-year strategy for mental health research. The work has been divided into different areas to cover Basic Research, Translational Research, Population and Health Services Research and Children and Young People.
Clare, who lectures at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London on service user research, often referring to examples from her own experience of bipolar disorder and postpartum psychosis, has been asked to be Deputy Chair of the Population and Health Service working group. Clare said,
“I’m very pleased to have been asked to take part in this important exercise, especially as it enables me to represent people using mental health services, particularly perinatal services”.
Overseen by Professor Chris Whitty, the government’s Chief Scientific Adviser, these groups will meet over the next few months with a view to publishing recommendations next year.
This week also saw the launch of a paper written by Clare on on decision making in pregnancy for women with bipolar (see photo) which you can find here. Double congratulations!
Congratulations to APP Media Volunteer, Katy Chachou, who pulled out all the stops to get her story told in a sensitive, informative and positive way by the Daily Mail.
APP was contacted by freelance journalist Jane Feinmann following the paper’s recent report on the tragic case of Alice Gibson-Watt.
Katy and her husband George were interviewed for the piece and a photographer sent to get pictures of mother and daughter today. Katy even agreed to be contacted while on holiday abroad to make the article happen.
Also included are some great quotes from APP Chair, Giles Berrisford, alongside informed comments from perinatal mental health experts Dr Judy Shakespeare and Dr Carrie Ladd from the Royal College of General Practitioners.
It’s a great piece combining a traumatic personal experience with expert opinion. It demonstrates that PP can happen to any new mother but that full recovery is possible. We hope it will help raise awareness of PP among a large and new audience. Happily, the online article also carries a link to APP’s website at the foot and embeds our stigma-busting video.
Huge thanks to Katy and Giles for their excellent work!
The Royal College of General Practitioners has launched a new Perinatal Mental Health Toolkit designed to support GPs and other healthcare professionals as a go-to collation of resources that could support them to deliver the care their patients with perinatal mental health conditions need.
But the Toolkit isn’t just for GPs. It contains plenty of patient and even partner resources including APP’s Insider Guides and Peer Support Service.
Dr Carrie Ladd, RCGP Clinical Fellow for Perinatal Mental Health, and lead on the PMH toolkit, said it “has been developed in consultation with women who have had perinatal mental health problems, and we hope it will give them the confidence to approach health professionals, and be better informed about their choices and what they should expect.”
APP Chair, Dr Giles Berrisford gave a keynote presentation at the launch talking about NHS England’s strategy for transforming perinatal mental health. Following the hashtag #PMHtoolkit on Twitter showed how positively the Toolkit is being received and a sense of optimism about the future of perinatal mental health services.
Find out more, take a look at the Perinatal Mental Health Toolkit on the RCGP website.
We are pleased to announce that APP will continue to host the successful Everyone’s Business Campaign on behalf of the Maternal Mental Health Alliance (MMHA), following the award by Comic Relief of a grant of £750,000 for the next phase of the campaign.
The Everyone’s Business campaign calls for all women throughout the UK who experience perinatal mental health problems to receive the care they and their families need. The grant will enable the MMHA, supported by APP, to sustain and build on the momentum of the first phase of the campaign. A recent independent evaluation shows that over the past three years the Everyone’s Business Campaign has made a significant impact in six key areas, including enabling perinatal mental health to become a political priority and strengthening the case for improved perinatal health services.
Dr Jess Heron, Director of APP says, ‘Action on Postpartum Psychosis is delighted to have been asked to continue hosting the Everyone’s Business Campaign. We have been pleased to play our part in the campaign’s success so far and very much look forward to working with MMHA to help deliver the next phase. The campaign is absolutely vital and has already had a real impact to women and families. Crucially, for families affected by Postpartum Psychosis, it is changing national consciousness of the importance of access to good maternal mental health care. There is still much more to do over the coming years and this would not be possible without Comic Relief’s support.’
Leicestershire Partnership NHS Trust today released a great video to highlight the expansion of specialist psychiatric support for mothers who experience mental illness.
Two families share stories of recovery in the film, including a mum who experienced Postpartum Psychosis after the birth of her first child. She and her husband are now expecting again, having taken advice from the perinatal mental health team and put a care plan in place. Their story begins about 6 minutes in.
The character of Sarah Platt in Coronation Street is currently under psychiatric care in a Mother and Baby Unit having experienced psychotic episodes. On Monday 4th July she was diagnosed on screen with Postpartum Psychosis (PP).
It is good to see that Postpartum Psychosis is being tackled by the major soaps, and that the term is receiving wider use. For years, PP has been a silent mental illness. Many women and families affected by PP have not previously heard of it. They do not know: the signs and symptoms to watch out for; where to get help; or that they will recover. Many struggle to discuss their experiences with friends or other new mums, for fear of stigma, and because most of their friends have also not heard of it.
Unfortunately APP was not approached or consulted about this storyline. APP have requested that the programme list us on ITV’s Advice webpage, but the programme have stated that they cannot. MIND have told us that they will direct any enquires they receive to APP – to our website, email and peer support forum.
There is a concern being expressed by many of our members that the experience and symptoms the character Sarah Platt is portraying in the soap opera are not typical of PP, and not in line with their own experience of the illness.
Although PP can manifest in a wide variety of ways and it is hard to describe a ‘typical case’, it would be more usual for PP to begin in the first few days following childbirth, with women developing hallucinations, delusions, mania, depression, odd and erratic behaviour. It can get worse very quickly and should always be treated as a medical emergency. Most women need to be admitted to a Mother & Baby unit for treatment. To date, there has been little evidence that social or psychological factors play a major role in causing PP, for most women. Research suggests that a person’s genes may play a role, as well as sleep disruption, and the major hormonal and biological changes that occur around the time of birth.
PP affects people of all social classes, education levels, family backgrounds and cultures. PP can happen ‘out of the blue’ to women without previous experience of mental illness. There are some groups of women, women with a history of bipolar disorder for example, who are at much higher risk.
APP offers support to all women suffering from psychosis in the postpartum year. Whether an episode is triggered by childbirth or later in the postpartum year, many of the issues women need support with when ill and managing a baby will be the same.
• Insider Guides – developed with the help of women who have experienced PP and their partners www.app-network.org/what-is-pp/app-guides
• Peer Support – an online forum where you can talk to other women and partners that have ‘been there’ www.app-network.org/peer-support
• 1:1 email support – we can connect you with a trained peer supporter – all of whom have recovered from PP www.app-network.org/peer-support
Yesterday, Monday 6 June 2016, the charity Parent Infant Partnership (PIP) UK launched the UK’s first Infant Mental Health Awareness week, and a new campaign ‘Building Babies Minds’ which seeks to highlight the importance of laying the foundation of the mind for good mental health in infancy. At APP, we understand the importance of mothers and babies getting a good start in life and we welcome this campaign to raise awareness.
“Funded by Big Lottery over the past four years, APP has changed the landscape of PP by increasing public awareness, improving patient information, and increasing the availability of support. Our research clearly demonstrates the positive difference our work has made to the lives of women and families affected by PP across the UK. It is vital that we build on the success of this project – there is so much more to be done.
With the help of our supporters, we will continue to improve public understanding of PP, its symptoms, and that recovery is possible; we will continue to improve access to information and peer support; we will continue to build our PP community to reduce isolation, alienation, guilt, and promote good recovery, in all women and families affected by PP; we will campaign and educate to ensure that all women, their babies and families are adequately cared for; and we will facilitate more research to understand the causes, impact, and treatment of this traumatic and family-shattering illness.”
Fern Britton joins mums and dads to speak out about Maternal Mental Health for Sport Relief.
- More than 1 in 10 women develop a mental health illness during pregnancy or within the first year after having a baby
- Join the conversation from 11am Weds 24th Feb on Twitter @SPORTRELIEF using #MUMTALK
- Sport Relief cash to help people affected by maternal mental problems
As part of a series of new short films produced by Sport Relief, TV presenter Fern Britton will share her experience of maternal mental health alongside other mums and dads from across the UK, who have also been affected, on Wednesday 24th February.
The films will be shared on Sport Relief’s Twitter feed to shine a light on maternal mental illness in the UK and help to reduce stigma around the issue. The public will also be encouraged to share their stories and talk about their own experiences. Members of the Maternal Mental Health Alliance, which benefits from Sport Relief cash, will be responding during the day to any people looking for advice or support.
By going to @SportRelief on the day, the nation will gain a unique insight into an issue that affects as many as 1 in 10 women yet is still a big taboo and not talked about openly. Many women feel completely alone and too embarrassed to share their true feelings, with 7 in 10 women affected hiding or downplaying their symptoms.
Without understanding, support, and treatment these mental illnesses have a devastating impact on the women affected and on their partners and families. However, with the right help at the right time women affected by maternal mental health problems do get better.
By giving women and men a platform to speak out about maternal mental illness, Sport Relief hopes to highlight what help is out there, and encourage more people affected to seek the support they need to recover.
Cash raised through Sport Relief has been helping to fund maternal mental health projects in the UK since 2010. These projects include the Bluebell Care Trust in Bristol, and the Maternal Mental Health Alliance’s ‘Everyone’s Business’ campaign, which raises awareness of the importance of maternal mental health issues at a national level and is helping women and families across the UK to access specialist support.
The contributors featuring in the films have been helped through Bluebell Care Trust and member organisations of the Maternal Mental Health Alliance.
Fern Britton said: “Everyone tells you that having a baby is going to be perfect, so you try to be the perfect mum. However, you’re not blooming at all, you’re blooming awful. I was lonely, isolated and frightened. I felt lost, like a failure and I couldn’t identify with who I was anymore. When the doctor told me what I was feeling was Postnatal Depression it was so liberating, I felt such a sense of relief that I wasn’t going mad. Once my family knew, I started to get better. Once I could talk to my family and they understood, it was a wonderful feeling.”
“The minute I said the words to someone, help it was there for me. If I had known how easy it was to get help I would have told someone sooner. Having been through this and getting better myself I would urge any mum who might be feeling in a dark place to tell someone – don’t wait! If you tell someone, you will get help, and you will get better.”
The day is being supported by the Maternal Mental Health Alliance, Bluebell Care Trust, the Royal College of General Practitioners, MIND, Channel Mum who are following the stories @SportRelief and sharing their own views and insight using #MumTalk.
Dr Alain Gregoire, Perinatal Psychiatrist and Chair of the Maternal Mental Health Alliance said: “Being a parent is the most difficult thing any of us ever does and when we go through difficult times we need other people, but if we are not mentally well, we feel alone. Knowing you are not alone, that other people care and want to help, and knowing that if you speak out about how you are feeling you will get help, are crucial steps to recovery. Through this day of activity, Sport Relief is giving every one of us the opportunity to help mums and dads who are suffering from mental health problems at this critical time in their lives”
Sport Relief is back from Friday 18th to Sunday 20th March and there are more ways than ever for you to take part, change lives and feel proud. The money raised will transform people’s lives in the UK and across the world’s poorest communities, including people affected by maternal mental health problems.
About Sport Relief
Sport Relief brings the entire nation together to get active, raise cash and change lives. The money raised by the public is spent by Comic Relief to help people living incredibly tough lives, across the UK and the world’s poorest communities. It all leads up to the Sport Relief weekend and a fantastic night of TV on the BBC.
Sport Relief 2016 will take place from Friday 18th to Sunday 20th March 2016. You can run, swim, cycle or even walk yourself proud at events across the country. There’s a distance for everyone, whether you’re sporty or not. Find out more at www.sportrelief.com
The Prime Minister announces almost a billion pounds of investment to enhance mental health services across the country.
- £290 million to provide specialist care to mums before and after having their babies
- first ever waiting time targets to be introduced for teenagers with eating disorders and people experiencing psychosis
- nearly £250 million for mental health services in hospital emergency departments
- over £400 million to enable 24/7 treatment in communities as safe and effective alternative to hospital
Dr Jessica Heron, Senior Research Fellow in Perinatal Psychiatry at Birmingham University and Director of Action on Postpartum Psychosis (APP), which provides information and support to women and families affected by the condition, says:
“APP Action on Postpartum Psychosis welcomes the Government’s announcement today of £290 million investment to provide specialist mental health care to mums before and after having their babies. This funding is desperately needed to help women suffering from maternal mental ill health, their partners and families, and improve health outcomes. The serious shortage of Mother and Baby Units (MBUs) nationally is a real concern in particular, and we hope the investment will help address this. Admission to an MBU allows mothers to keep their babies with them during treatment. Research conducted by APP on women with Postpartum Psychosis, a severe form of maternal mental illness affecting 1-2 births in every thousand, shows that women admitted to specialist MBUs report improved experience of care, feeling safer, more confident in the staff, more informed about their illness, feeling better supported on recovery, experience reduced time to full recovery, and feel more confident with their baby on discharge from care, than women admitted to General Psychiatric units. Yet nationally there are only half as many places in MBUs as needed. A report from the London School of Economics in 2014 estimated the costs of not having an adequate maternal mental health service at approximately £8 billion a year.”
“Saving Lives, Improving Mothers’ Care – Surveillance of maternal deaths in the UK 2011-13 and lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2009-13”
Prof Ian Jones, Director, National Centre for Mental Health, Cardiff University and Vice-Chair, Perinatal Faculty, Royal College of Psychiatrists, said:
“For every woman who dies, there are many more who are near misses. The strength of the methodology used is the detailed review of all cases of maternal death in the UK and the depth of information gathered. We can therefore learn lessons that apply more broadly to mental health services not just to those for women in the perinatal period. The findings of the current report are consistent with previous reports and with current knowledge – what is sobering, however, is despite similar findings over the past decade we do not seem to be learning the lessons.
“As with previous reports the latest confidential enquiry into maternal deaths emphasise the importance of good mental health to women at this time. It is vital that the messages are heard and the lessons are learnt – not only by specialist perinatal clinicians but mental health teams more generally, in addition to antenatal services and primary care. A number of ‘red flags’ are described which need to be recognised and responded to. The findings of the report remind us that pregnancy and childbirth are not for all women times of joy but may herald episodes of severe mental illness. We must ensure that women with mental illness in the perinatal period, where ever they live, have access to the specialist services they need.”
From May to October here at APP we were busier than ever. In brief here are some highlights:
Three day residential PP Art Workshop, Devon. A group of 13 women with experience of PP travelled to the beautiful area of Dittisham to explore, through art, the experience of Postpartum Psychosis. This provided a great opportunity to meet each other, discuss their PP experiences and to translate memories and emotions into Art. Read more about the workshop and see the beautiful work produced and the wonderful feedback from those who attended here>
APP attended the Birmingham Mother & Baby Unit annual review at the Barberry, Edgbaston, on 14th Oct to meet with recovered service users and to hear about the great work being done. The focus of the review was service development and to provide a format for service users to feedback ideas for taking things forward.
The day was hosted by Giles Berrisford (Chair of APP) and Catherine Beard (Friends of the Mother & Baby Service) with guest speakers including clinicians, professionals and service users talking about their personal experiences using the services. Throughout the day we heard interesting and thought-provoking presentations about a study of ‘Men’s experiences of Postpartum Psychosis requiring MBU admission’ and ‘Perinatal services from both sides of the fence’ – a personal Postpartum Psychosis story by a trainee GP. After a light lunch with plenty of time for mingling, other sessions included ‘The voice of Dads’, ‘bonding Interventions’ and ‘Meet the Staff’.
It was a friendly, informative and constructive day and an excellent example of collaboration and engagement with service users to continue developing, improving and growing services.
Join us on 27th November at The Pavillion, Derby, DE24 9HY for this wonderful charity fundraiser. For tickets Tel: 0844 477 0601 or email email@example.com
APP attended The Perinatal Mental Illness Conference /Elaine Hanzak‘s Conference and book launch ‘Another Twinkle in the Eye‘ -Considering a second pregnancy after Postnatal Illness, 23rd Sept, Manchester. There were around 150 delegates at the event, including Midwives, Health Visitors, Consultants and women who have recovered from severe PND and Postpartum Psychosis.
It was a very full day with moving talks from women and fathers sharing their personal experiences. APP Trustee, Niclola Muckelroy shared her story of PP and recovery. Some of the topics covered were Perinatal Psychiatry, birth experience, communication, bonding & attachment and creativity and included sessions by organisations such as Family Action, Smile, PSS?, The Marce Society, EFT. It was an excellent and moving day with plenty of opportunity to network with other organisations and women who’ve experienced PP, many of which were keen to work more closely with APP and become APP Volunteers and Regional Representatives.
She is one of four nominees shortlisted and invited to attend the Royal College’s awards ceremony at their London headquarters on 10th November.
This award recognises the significant contribution service users make to developing and improving mental health services. The judges were looking for nominees who had made a positive impact on services by improving the perception of mental health issues; encouraging change in mental health policy; and contributing to the training of mental health professionals.
Clare comments, “I’m delighted to have been nominated for this award by members of the Royal College in recognition of my work with the wonderful charities Action on Postpartum Psychosis (APP) and Bipolar UK and my involvement in the Maternal Mental Health Alliance campaign to improve perinatal mental health services in the UK”.
Back in September 2014 it felt like a good idea to try a 70.3 Ironman and take the opportunity to raise some more money for APP.
I injured my neck and shoulder in a race crash in Geneva and had made it worse by going into the ditch avoiding a tractor a week before Dublin.
If this report doesn’t sound like I enjoyed most of the race then it’s accurate – I’d been to a sports physio and an osteopath the week before but the level of pain I was getting from my neck and shoulder meant that at every stage of the race I was telling myself, “I’ll just do this next bit and then drop out”.
We would like to say a very big thank you for all the support we’ve received over the past month with our National Lottery Award campaigning.
Sadly, we came a very close 2nd to the winning project with just 106 votes between us. Despite this, we had an absolutely fantastic campaigning month and have reached a massive audience we wouldn’t normally have had the opportunity to. The exposure given to Postpartum Psychosis among the general public, midwives, health visitors, GPs, psychiatrists worldwide and also on a more personal level among families has been an incredible success.
VOTING ENDS AT MIDNIGHT!
Well here it is – the final update.
Unsurprisingly it’s been the busiest week of the campaign. It’s also been the wettest. Volunteers braved the downpours and over 500 people voted for APP at the Sheldon Countryside Festival, where the team also received support from the Lord Mayor of Birmingham. 130 people voted at Sacred Heart and Holy Souls church and families also voted at holiday events organised by the Pavilion Church at Bournville and at indoor play centres Tiny Terrorz and Funatticz.
Thanks to the tremendous efforts of our members we have had media coverage in the Londonist, the Yorkshire Post, the Birmingham Mail, and articles in the Exeter Express and Echo and the Sidmouth Herald (repeated in the Midweek Herald).
Social media has been remarkable. Just in the past week (to yesterday) our content has reached over 1.07 million individual Twitter accounts, with 2.7 million impressions (the total number of tweets that have appeared). The figures for the week before were 320k accounts and 642k impressions. The most retweeted was a tweet from the NSPCC and we’ve had more help from Denise Welch as well as tweets from Britmums and lots of Twitter activity around the Londonist piece.
Voting is open until midnight. Remember that everyone in your household can vote with their own email address or phone number.
We have done our very best and, win or lose, have made a massive step forward in raising awareness. When voting has finished and we’ve all had a chance to have a sit down and/or a meal without a laptop, phone, voting forms or leaflets in hand, we will be getting together to have a look over all that has been achieved in the past five weeks. Our task then will be to work out how best to build on the incredible work everyone has done. Thank you all.
In June 2015 my sister-in-law joined me in a 10 mile charity walk through the Kent countryside. It was an exhausting but rewarding day, with the added bonus of plenty of sunshine and beautiful views. I selected APP as my chosen charity as the work they do for women and their families is so important. When I suffered postpartum psychosis myself 11 years ago there was very little user-friendly reliable information, and no access to peer support. It was a lonely and terrifying place to be, and the stigma surrounding mental illness really hindered me in properly engaging in the treatment and support that I was offered. I count myself very lucky to have achieved a good recovery. The information produced by APP, their anti-stigma work and online peer support forum provides amazing support for women who experience this distressing and dangerous illness. I hope that the £180 I raised will be a really worthwhile contribution to their work.
Congratulations and heartfelt thanks to Tracey for completing the walk and raising funds too!
IT’S THE LAST WEEK OF VOTING!
We’ve come a long way but we really need a final push. APP’s volunteers, supporters and friends have been doing an amazing job. We’re tired, our fridges are empty and our laundry baskets are full, but we know that we’re making a difference, not just by getting votes but by reaching large numbers of people who’d never heard about PP before and increasing the understanding of maternal mental health issues.
On TV we’ve seen postpartum psychosis feature on the Victoria Derbyshire show on BBC Two on Monday, on Channel 4 news also on Monday and on ITV news on Tuesday (the news pieces in response to Healthwatch England’s report on unsafe discharge from hospital).
It’s been a busy week on Twitter – the NSPCC mentioned us to their 167k Twitter followers and we’ve had tweets and retweets from the Heart of England NHS Trust, Prof Louis Appleby, MGC Hayles, Mental Healthy, Mental Elf, and Love Brum. Many of the Maternal Mental Health Alliance organisations have also tweeted. Our first 50 tweets this week are at 48075 impressions, and still counting (as it goes Friday to Friday). Our #endPPmyths video was the main story in the Postpartum Post. Organisations who’ve supported us include the Institute of Health Visitors, PIP UK, PSI, Praeclarus Press, PNP Support New Zealand, National Centre for Mental Health and APPAH.
We’ve also been going out and about. We got a really positive response at the Good Hope Hospital Community Fete on Saturday. And a supporter simply knocked on doors around his local area and asked people to vote – and collected 250 votes! Amazing!
With a week to go please think what else you can do to help. Please share the message with friends, contacts, and colleagues and please email, tweet large organisations and post the link to vote on large and influential Facebook groups. Check your friends HAVE actually voted (not just said they WOULD!). Take a few paper voting forms and drum up face to face votes at whatever you’re going to – big family BBQ, village fete, car boot… We can send you forms (and official APP T shirts to wear!). We will be at Sheldon Countryside Festival on Sunday so come and say hello if you are there.
A week today will be the final campaign update. We need a sprint to the finish line – and to know we have done all we can.
This year I will be running the Leicester Half Marathon on Sunday 25th October. A complete turnaround for someone who hated running six months ago and couldn’t run a mile. A 10k assault course for charity in April whetted my appetite and the next step beckoned.
I feel I really have to push myself this year, I’m not getting any younger, I want the physical challenge but the ultimate goal is to represent my heroic wife and the support APP have provided to both of us. Giving something back is of paramount importance to me.
My wife encountered PP in summer 2013 after the birth of our daughter and then suffered a particularly nasty relapse in summer 2014. I encountered the comforting arms of APP during and after the relapse. You were there when I needed you and when my wife was well enough, when she needed you. The chance to speak to volunteers and other families going through the same experiences was and still is invaluable as we try to make sense of it all; To learn that you are not alone, despite the apparent destruction of your ‘world’.
APP has been incredibly supportive of me as a husband, the carer in the bad times. A mentor, a chat on the forum and a chance to shape future care with discussions and taking part in research with Cardiff Uni. If I could grade your support, A*, every time.
Thank you, Ollie.
Three weeks down – two to go
We’re past halfway, and it feels like we are at a critical point. We’ve had re-tweets from Home-Start UK, Solihull Police, lots of Birmingham-based MPs and TV presenter (and mum) Professor Alice Roberts. And auctioneers Sotheby’s have asked all their staff to vote for us!
We’ve also had some unhelpful responses from a variety of organisations, from online sites for parents, to publications for GPs – who typically say ‘we have information on postnatal depression, so we don’t need it on postpartum psychosis’. To which we say – yes you do need it. It is so important that families and GPs are properly informed about maternal mental health.
Next week there should be some press coverage and a tiny bit of TV featuring APP. Monday’s episode of ‘Victoria Derbyshire’ on BBC Two/BBC News Channel 9.15 to 11am is all about mental health. Keep an eye on our social media for more info on our media coverage.
Please continue your support. Anyone you know you’ve not asked to vote yet – please ask! Do you work for an organisation with a large mailing list or a high circulation newsletter which could put something about voting for us in it? Please ask them. Might you take one of our ‘voting by paper’ forms along to your choir practice, sports team training or work coffee room? Do you have relatives overseas you could ask to vote (votes from abroad still count!). We need more votes and everyone voting is someone who may find out about PP who had never heard of it before – and that can only be a good thing.
Thank you, thank you, thank you to all who are working so hard to achieve all we can before the 29th!
Two weeks down – three to go
Work has continued apace to get the word out about the National Lottery Awards – and to get people voting! We’ve added another 500 likes on our Facebook voting page (and are now at 2400) and added 100 new likes on our Action on Postpartum Psychosis main Facebook page. Writer Jodi Picoult retweeted to 111 000 followers, and we had a retweet and support from Norman Lamb. We’ve had support from the South West Strategic Clinical Network and Postpartum Support International. We were mentioned in an article in the Telegraph online yesterday highlighting the need for better mental health services for women in pregnancy and after birth. We’ve also managed a huge mailout to 450 members, sending them our guides, information about our services and a letter about our lottery nomination, with voting information. Special thanks to volunteers who spent a very hot couple of days in the APP office stuffing envelopes.
Thank you to all the individuals working so hard – too many to name here – let’s keep on going.
One week down – four weeks to go!
We’ve made an amazing start to the opportunity given to us by the National Lottery Awards by being nominated to become Health Project of the Year. In the first week of voting we’ve had 1.9 thousand Facebook likes registered on our National Lottery voting page, and been mentioned on Twitter by Ruby Wax, Fern Britton, Denise Welch and Marian Keys. We’ve had support from organisations such as The Marce Society, Bipolar UK, Time To Change, and the Royal College of Midwives. Organisations have tweeted directly to around 187,500 followers, and there are nearly 44,000 followers of organisations who have retweeted our tweets. And in the middle of a very busy week we had a wonderful Family Fun Day where families and friends got together to enjoy a fabulous picnic, play games, chat, raise money for APP and meet others to share experiences of and interests in postpartum psychosis. Oh and of course to vote!
Well done and thank you everyone for a tremendous start – let’s keep up this momentum over the next four weeks.
Make a difference in mental health – vote for Action on Postpartum Psychosis in the National Lottery Awards! http://bit.ly/voteforapp
Jo, who is an enthusiastic supporter of APP, is running the Worthing 10K in June and raising funds for APP.
“I hope that mothers, partners & families everywhere will sponsor me in order to enable APP to address the ignorance, stigma & lack of provision which it has already done so much to address.”
Running 10k will not be easy for Jo (is it ever?) so please spur her on by sponsoring her if you can. Let us try together to exceed her target!
On Friday, 3rd April Sandra and Bob Chapman of Rosliston celebrated their golden wedding at Hoon Ridge in Derbyshire by kind invitation of Alex & Heather Heron. An afternoon tea party was enjoyed by a very lively group. Sandra is a member of the local “Breakaways” choir who, in between scones and strawberries sang well into the evening . Adrian Blamire entertained the party during the afternoon and Heather spoke about the valuable work of APP. Instead of presents Sandra & Bob asked for a donation to be sent to APP. We thank the happy couple for thinking of APP as they tripped down memory lane with their friends and family. A great sum of £192 was raised. Well done everyone! …And what a great team of caterers!
A unique and evocative piece donated by the exciting artist Dale vN Marshall was auctioned in December. After much anticipation and some fierce bidding, we were very pleased the final figure reached £594.
We would like to thank Dale and his supporters for this incredible chance to raise money to support, campaign, research, publish, inform and connect to build a better future for all those effected by Postpartum Psychosis. I’d like to add my own personal thanks for creating a remarkable body of work that transcends words and moved me so deeply.
On 4th March a group of APP representatives attended the East Midlands Mental Health Annual Conference. Nicola spoke about Patient Involvement in improving mental health care and had a fantastic response at the conference and on social media. It was interesting to hear about early intervention in psychosis and NHS England Strategy for Mental Health. Well done Nicola & team!
Andrea Lambert, APP’s Peer Support Co-ordinator & Trustee, was delighted to be recognised in the Deputy Prime Minister’s Mental Health Hero Awards 2015.
The awards are part of the Deputy Prime Minister’s on-going work to bring awareness and treatment for of mental health in line with physical health.
The regional winners were chosen from 900 nominees by an expert panel who were looking for those who were leading the way in changing lives through one or more of the following:
- helping to break the stigma around mental health
- inspiring others in addressing or overcoming mental health problems
- making it easier for people to access mental health support and advice
- supporting people experiencing mental health problems to stay in or return to work
- pioneering new or innovative ways of supporting people with mental health problems and/or their families
Andrea collected her runner up certificate ’in recognition of exceptional work in the field of mental health’ at a reception with the Deputy Prime Minister, Right Honourable Nick Clegg MP. The reception was held in Whitehall, London on Thursday 5 February to mark the launch of ‘Time to Talk Day’. The desire to bring mental health out of the shadows was the theme of the awards presentation reception.
Andrea commented, “I’m delighted to accept this award on behalf of all APP staff & Volunteers, who are making a difference on a daily basis. I’m incredibly proud of the work being carried out and the considerable progress we’ve made. It means a great deal that Maternal Mental Health is recognised in this way and brought to the forefront.”
Deputy Prime Minister Nick Clegg said:
“I’ve been overwhelmed by the huge number of responses we’ve had for these awards and the incredible work going on to help other people in their darkest hours. Every single one of them is helping us win the fight to tackle the stigma and prejudice around mental health and build a fairer society where no one has to suffer in silence. In my eyes they are all winners.
Days like this are a reminder of the progress we have made in raising awareness of mental health, but we still have a long way to go. Today, we can all make a difference by giving just 5 minutes for Time to Talk Day and speaking out about mental health. It may be minutes to you but could make a world of difference for someone else.”
One of the nominations she received can be read here>>
A warm thank you to all of our amazing supporters & volunteers for their work in 2014!
Although progress is never as fast as we’d like, we must remind ourselves that this year we have: trained another set of Peer Supporters to offer support to women and families on our community forum and via email; run an event for new potential volunteers to talk about the work APP does (the largest ever gathering in one place of women who’ve had PP); published a guide for women at risk of PP who are planning pregnancy; published a guide to support women’s partners; expanded our web information and personal stories; set up our network of Regional Representatives, coordinated by Nicola; and begun developing a handbook, powerpoint slides and a training podcast to support the work of our Regional reps.
Charlotte Bevan’s death and that of her newborn baby has deeply affected many of us. We feel desperately sad for Charlotte’s partner, family, friends and all those involved in her care. We do not yet know the circumstances of Charlotte’s death and therefore we cannot make assumptions about Charlotte’s state of mind, but this is a call to arms.
As trustees of Action on Postpartum Psychosis, we feel we must speak out in general terms about the landscape of care for severe perinatal mental illness. Despite the hard work of this charity and of those allied with us (see Everyone’s Business), misinformation, ignorance, and stigma surrounding perinatal mental health abounds.
In November a talented artist, Alexis Stevens, designed and produced Christmas cards for the Chelsea & Yorkshire Building Societies with the aim of donating all of the sale proceeds to APP.
The eye catching result with its London dreamscape and pop- art style is already selling well in the societies’ branches- especially in London.
We feel sure that APP Members and Friends or supporters of APP throughout the UK would enjoy sending the cards – either in a “corporate” capacity or as personal cards to friends – not only to support fundraising but also to raise awareness of our charity (whose details are writ large on the back of each card!)
We should like to offer the warmest of thanks to Alexis & to the Westminster branch of the Society and also to the production team behind the project including: Alan Bale who has been so very helpful in getting cards out to branches and also to Donna Dunston who has sorted out production.
By seizing the initiative & supporting APP in this way, the Chelsea & Yorkshire team have shown just how flexible, caring, and energetically charitable such companies can be in support of those with serious perinatal mental illness . So if you are near the following branches in London, Chelsea, Ealing, Fulham, Kensington, City, West End or Westminster, why not pop in as our ambassadors , say “hello”, and buy some of the societies’ cards ? Branch finder>
Warm thanks & a Happy Xmas to Alexis Stevens and all those at the Chelsea & Yorkshire Building Societies , who are supporting APP this Xmas season.
From the APP fundraising team
On Tuesday 21 October 2014 the MMHA’s report into “The costs of Perinatal Mental Health Problems” was launched in parliament.
Representatives of over 60 UK charities and health professional organisations met with MP’s from all parties, and people with lived experience, to highlight the unacceptable variation across the country in maternal mental health service provision and focus attention on the economic case for action.
Dr Dan Poulter MP, Parliamentary Under Secretary at the Department of Health, pledged commitment to implementing NICE guidelines across the country; highlighting the importance of specially trained Midwives and Health Visitors and the availability of Mother & Baby Units in all areas of the country, so that women do not have to travel great distances from their families to be admitted, or worse still, be separated from their baby on admission.
Failure to fully address mental health problems in pregnancy & following childbirth costs over £8 Billion, report finds
Perinatal mental health problems carry a total economic and social long-term cost to society of about £8.1 billion for each one-year cohort of births in the UK, according to a new report ‘The costs of perinatal mental health problems’ released today by the London School of Economics and Centre for Mental Health.
The report is part of the Maternal Mental Health Alliance’s ‘Everyone’s Business’ campaign (www.everyonesbusiness.org.uk), which calls on national Government and local health commissioners to ensure that all women throughout the UK who experience perinatal mental health problems, receive the care they and their families need, wherever and whenever they need it.
Our huge thanks go to Anna Jones who celebrated her 40th birthday by thinking of others. Anna persuaded her friends to join her in a recent charity London to Brighton bike-ride for APP. This really was no mean feat given that she managed to build a team of 34 women who trained for months to complete the ride. They all arrived in Brighton in a purple t-shirted haze of glory and raised the most magnificent sum of £11,598.82 to help us with our work. Again, we cannot thank team Anna Jones enough for what has proved to be a real highlight for APP.
Our huge thanks go to Stephen and Kerstin Botham and to their friend Jen who successfully completed the recent North-West Triathlon Relay in aid of APP. The triathlon was the culmination of very many months of fundraising by team Botham on behalf of APP, in memory of their friend rosy who died after an episode of PP.
We cannot thank the Bothams’ team enough for their months of arduous training and for the selfless giving of their time at the saddest of times for all concerned. Their efforts raised a huge sum for app of £4,325 which will be used to support and raise much needed awareness of PP so that other women might escape the tragedy which has faced Rosy’s family and friends.
Current and Past Presidents of the Royal College of Psychiatrists come together to highlight Maternal Mental Health Alliance’s Call to A.C.T. – call postcode lottery of services ‘a disgrace’.
The current and past Presidents of the Royal College of Psychiatrists today jointly welcomed the launch of the Maternal Mental Health Alliance’s Everyone’s Business campaign and their Call to A.C.T. Professor Sir Simon Wessely (President of the Royal College of Psychiatrists) and Professor Dame Sue Bailey (Chair of the Children and Young Peoples Mental Health Coalition (CYPMHC) and Immediate Past President of the Royal College of Psychiatrists) said:
“It is a disgrace that although one in ten mothers will develop a mental illness either during or in the first year after pregnancy, half of the women in the UK do not have access to specialist community perinatal mental health services. The current postcode lottery of provision means women are left to suffer, families risk breakdown, children suffer and society suffers. It is frankly unacceptable that suicide is one of the leading causes of death for women during pregnancy and one year after birth.
“We wholeheartedly welcome the Maternal Mental Health Alliance’s Everyone’s Business campaign which calls for Accountability for perinatal mental health care to be clearly set at a national level and complied with, for Community specialist perinatal mental health services meeting national quality standards to be available for women in every area of the UK and for Training in perinatal mental health to be delivered to all professionals involved in the care of women during pregnancy and the first year after birth.
“We are pleased that the RCPsych Faculty of Perinatal Psychiatry was able to assist the Alliance with its mapping of current services, and we will lend whatever advice or support is needed by those at the helm of health policy in the four nations for them to act to address this iniquitous and unjustifiable variability which penalises women – wives, partners, daughters and friends – at their most vulnerable. By improving the health (and there is no health without mental health) of any woman you improve the lives of their children, generations of children to come, and it leads to more flourishing communities.”
#everyonesbusiness Campaign Launched Today
Pregnant women and new mothers across almost half of the UK do not have access to specialist perinatal mental health services, potentially leaving them and their babies at risk, according to data released today (8 July).
Maps highlighting the gaps in provision are published today by the Maternal Mental Health Alliance to mark the launch of its everyonesbusiness campaign.
The Alliance of professional bodies, patient organisations and charities, is warning that women who develop a perinatal mental illness are missing out on essential and potentially lifesaving care.
World First: Highest number of women with lived experience of Postpartum Psychosis come together under one roof!
Following the event we received many messages from attendees expressing how much meeting other PP women face to face meant to them and how much they got from the day on so many levels. Here’s one of them:
“I wanted to drop you all a few quick lines to say simply “Thank You!” for last Saturday at the Barberry. It was the first time I had attended an APP event & most importantly for me, the very first time I had met another living, breathing mother who had also experienced Postpartum Psychosis!! I now truly understand I have not been alone in this long old journey & this was an incredible feeling, very special indeed. I want each of you to realise that what you have achieved so far is worth every single minute & hour of effort that I understand must go into running that kind of Workshop. Thank you so very much.” ~ E.G.
On her blog ‘Bumps and Grind’, Kathryn writes about coming along to the Volunteers Event & also her experience of receiving support via our PPTalk online forum.
University of Adelaide researchers have found that women on antidepressants are more successful at breastfeeding their babies if they keep taking the medication, compared with women who quit antidepressants because of concerns about their babies’ health.
These results have just been presented this week at the 18th Perinatal Society of Australia and New Zealand (PSANZ) Annual Conference in Perth. Using data from the Danish National Birth Cohort in Denmark, researchers in the University of Adelaide’s Robinson Research Institute studied the outcomes of 368 women who were on antidepressants prior to becoming pregnant.
“We found that two thirds of the women (67%) stopped taking their antidepressant medication either after becoming pregnant or during breastfeeding,” says Dr Luke Grzeskowiak from the Robinson Research Institute.
“A third of the women (33%) continued to take antidepressant medication throughout their pregnancy and while breastfeeding, and these women were much more successful at maintaining breastfeeding up to and beyond the recommended six months.
“In contrast, those women who had stopped taking antidepressants were also more likely to stop breastfeeding within the recommended six months.”
Dr Grzeskowiak says the health benefits of continued breastfeeding greatly outweigh any perceived risk to the baby from antidepressant medication.
“This is a really important message … on the balance of it, we believe that continuing to take antidepressant medication and maintaining regular breastfeeding will be the best outcome for both the baby and the mother”
“This is a really important message because we know that breastfeeding has immense benefits for the child and the mum herself, including a degree of protection against post-natal depression,” he says.
“The amount of antidepressant medication that finds its way into a mother’s breast milk is very low. On the balance of it, we believe that continuing to take antidepressant medication and maintaining regular breastfeeding will be the best outcome for both the baby and the mother.”
Dr Grzeskowiak says many women struggle with decisions about what to do with medications both during pregnancy and lactation.
“If they’re taking antidepressants, they should be supported and encouraged by family members, friends and healthcare professionals to continue with their medication, knowing that good breastfeeding outcomes are all-important for them and their child,” he says.
This research was funded by the National Health and Medical Research Council, and the Women’s and Children’s Hospital Foundation.
Here at Action on Postpartum Psychosis (APP), we have been working towards developing online resources and an information leaflet for the partners of mums who have suffered Postpartum Psychosis, offering information and support for them during an episode of PP.
Over 80 partners of APP members have completed a postal survey and 12 men have taken part in telephone interviews about their support needs during PP – thank you! Last year we held a small focus group with partners to develop an outline for our web resources and we have now produced draft web and leaflet content.
In March 2014, we are planning to hold a workshop for partners. We are looking for partners who want to help us finalise our resources. We need partners to review and comment on the web and leaflet content, their design and presentation and ways that they can be promoted. We would also like partners to help us create a short videos aimed at other men in a similar situation, and photos / images to go alongside the web and leaflet materials.
The workshop will be a day session and is likely to be held on a Saturday at the University of Birmingham. Food will be provided and all transport expenses will be refunded. We hope it will be a great opportunity for partners to meet other partners who have been through similar experiences, and help us make the situation better for others in the future.
If you are a partner and you might be willing to consider coming along to this workshop or would like to use your IT, marketing or artistic skills to help us in any other way, please get in touch. It’s not a commitment at this stage, we aim to find out how many people might be interested in our workshop.
Professor Jones, who is Deputy Director of the research centre and an Honorary Consultant Psychiatrist in Cardiff and Vale University Health Board, was awarded the Psychiatric Academic / Researcher of the Year prize at a ceremony held at The Royal Society of Medicine in London.
The awards mark the highest level of achievement within psychiatry, and are designed to recognise and reward excellent practice in the field of mental health.
Kings College London is trialing a questionnaire assessing the perceptions of perinatal mental health services developed in collaboration with those who have used their services. The study: Improving the therapeutic environment on inpatient wards, requires patient contributions to the evidence base on inpatient care.
They require people to complete the survey and give feedback to enable them to fine-tune it before it is used in an upcoming nationwide trial investigating such services. Taking part will help develop an important tool that will be used to improve the care women receive in the future.
Can you help? It should only take 10 minutes and all results are anonymous.
If you are happy to complete an additional survey after 5-10 days’ time, please enter your phone number at the end of the survey. After completing both surveys, you will be entered into a prize draw for a £100 Love to Shop voucher as a thank you.
Please read the Patient information sheet here»
Once you have read the patient information sheet, click here to complete the survey»
UPDATE: Recruitment of participants for this study is now closed. Thank you to everyone who kindly took part. We look forward to seeing the findings.
The role of relationships in Postpartum Psychosis (unusual experiences during the postpartum period)
- Have you been given a diagnosis of Postpartum Psychosis (puerperal psychosis)?
- Would you be willing to talk about your relationships with important people in your life in relation to these experiences?
I am a trainee clinical psychologist at Lancaster University and I am currently carrying out research into the experiences of women who have lived through a period of mental distress after childbirth, and their significant others. I want to learn about the role of relationships during and after this experience. I hope that my findings will help staff in Mother-and-Baby units to work with the families and friends of women and continue to improve the services that women receive.
I would like to talk to women who have experienced Postpartum Psychosis and someone important to them (you can choose who this is – perhaps it could be a partner, mother, sibling or friend?) Both of you would need to be 18 years old or over. If you fit the above criteria and are interested in sharing your experiences, please contact me to find out more.
Tel: 0785 251 6566
Specialist Mental Health Midwives have a crucial role in effective perinatal mental health care. However, there are currently many maternity services without this important position, and where Specialist Mental Health Midwives do exist there are differences in their role, skills and experience.
This document produced by the Maternal Mental Health Alliance aims to help address this gap, by explaining why Specialist Mental Health Midwives are needed, and what they do. It is intended as a resource for maternity managers and commissioners looking to introduce or strengthen the Specialist Mental Health Midwife role in their local service. We hope that it will aid discussions and lead to improvements in local provision.
Eight volunteers with lived experience of PP came together from across the UK to attend a Peer Support workshop on 12th Oct. The day was momentous, memorable and a success on many levels. It was a real pleasure to meet and work with so many passionate and dedicated people. Thank you to everyone who gave up their free time and made the big effort to attend. We’re proud and grateful to further expand our PPTalk team with such a wonderful, inspirational group of volunteers!
As part of the Everyone’s Business Campaign, London School of Economics (LSE) and Centre for Mental Health are to publish a report looking at the ‘Economic Consequences of Maternal Mental Health Problems in the Perinatal Period’.
As a first step in this work, LSE & Centre for Mental Health have just issued a call for any information in this area, and in particular:
- National and International studies which measure the outcomes of individuals exposed to perinatal mental health problems – including mothers, children and their partners.
- Evidence on the (cost-) effectiveness of interventions or information about the cost of running a specific intervention.
- Information about any other relevant studies that you are aware of.
Bipolar UK and APP staged a ‘Pregnancy and Childbirth Workshop’ for women with bipolar on September 20th.
More than two dozen women and two husbands attended the workshop held at the charity’s headquarters in Victoria, London, to discuss the often difficult decisions women with bipolar face when considering pregnancy.
Great news for women in the South West: Cornwall gets its first perinatal mental health service – read this piece by Esmé Ashcroft in local paper The West Briton.
Pregnancy support group is NHS first for Cornwall
CORNWALL’S first mental health service aimed at helping women before, during and after pregnancy was launched on Monday thanks to support from a local charity.
With the help of the Angela Harrison Charitable Trust, the Cornwall Partnership NHS Foundation Trust launched the county’s first perinatal mental health team to help women across Cornwall and the Isles of Scilly.
The new service supports women who have had previous experience or newly developed moderate to severe mental health needs, during and after pregnancy.
The perinatal mental health team aims to speed up the diagnosis of mental instability so women can be given support and help as early as possible.
Are you a woman with bipolar, or concerned about the potential of bipolar, who would like more information about pregnancy and childbirth?
Bipolar UK Chair of Trustees Clare Dolman (who has bipolar and is a mother of two) and perinatal psychiatrist Professor Ian Jones invite you to join them at Bipolar UK’s Women, Pregnancy and Childbirth Workshop to discuss the choices facing women with bipolar who are thinking about pregnancy.
Date: Friday 20 September 2013
Time: 10.30am – 1.00pm
Venue: Victoria Charity Centre, 11 Belgrave Road, London, SW1V 1RB
Attendance is free as the workshop is being supported by Bipolar UK and Cardiff University. Our experience is that these workshops are very popular. If after confirming your place you are unable to attend please let us know and we will be able to offer the availability to another. We will be seeking a late cancellation charge of £20 for anyone not attending on the day and not informing us by Sunday 15 September.
Places are limited, so please confirm your attendance with Sally Roberts on firstname.lastname@example.org or 020 7931 6480.
APP were well-represented at the SAPPHIRE Stigma Summit in London this month.
Trustee Clare Dolman and member Ceri Rose manned the APP stall and its neighbour promoting the Maternal Mental Health Alliance. Both organisations attracted interest from many of the 400 delegates who were gathered at the Institute of Psychiatry, London, to discuss the impact of stigma and discrimination in mental health.
Recorded excerpts from the Radio 4 documentary ‘Unravelling Eve’ (involving several APP members) were also played at the Summit, which was also attended by project artist Joan Molloy.
Comic Relief has awarded the Maternal Mental Health Alliance (MMHA) £250k to run a Maternal Mental Health Campaign over three years.
The Maternal Mental Health Alliance (MMHA) is a coalition of thirty UK organisations committed to better mental health & wellbeing for women & their children in pregnancy & the first postnatal year, in order to improve long-term outcomes for mothers, fathers & children.
This funding is a result of work undertaken earlier this year to develop a Theory of Change for the campaign and the coming together of our organisations to harness our collective strength. Action on Postpartum Psychosis will act as official host / applicant.
This is wonderful news, not only does this provide necessary resources; it also highlights the huge importance of Maternal Mental Health in general. THANK YOU Comic Relief!!
APP will have a promotional stall at a major mental health conference next week: the SAPPHIRE Stigma Summit (research programme on stigma and discrimination in mental health) held in London on Thursday, July 4th.
Health Minister Norman Lamb, Charles Walker MP and Frank Bruno are among the guest speakers at the summit, the theme of which is “Sharing Stories to Stop Stigma’.
Tickets are still available (only £10 for service users), see the website for details www.sapphire.iop.kcl.
Each year the RCGP (Royal College of General Practitioners) chooses four clinical areas and supports efforts to raise the profile and awareness of these areas both within general practice and across primary care as a whole. The RCGP also works in partnership with key decision-makers and opinion-formers in each area on projects that seek to improve both the quality of care provided and patient outcomes. Click here for further details
We’re supporting a bid to the RCGP to get “Perinatal Mental Health” accepted as one of their clinical priorities for 2014-17.
For this we need to collect as many letters of support as possible from individuals and organisations explaining why important for GPs to receive specific training in perinatal mental health.
20 and 21 June 2013
Winchester Cathedral, UK
- Carefully planned comprehensive course
- national expert speakers
- great networking opportunity
- wonderful venue and location
For more details contact: Sue Wallis email@example.com
From Friday 26th July, 2013 Sotheby’s staff are to hold their Annual Staff Exhibition where the public can view and buy artwork created by members of Sotheby’s staff. The exhibition will continue, thereafter for 2 weeks, Monday to Friday, 9am till 5pm, at Sotheby’s London address: New Bond St Galleries, 34 -35 New Bond St, London, W1A 2AA
We are delighted to announce that APP has been nominated as its 2013 charity.
This wonderful support for APP is undertaken in memory of a well – loved colleague: Alice Montagu Douglas Scott (Alice Gibson-Watt) who, sadly, died recently. May we encourage you all to visit this wonderful exhibition during the 2 weeks it is showing this summer? …. perhaps buy reasonably priced artwork ? … or, if this is not possible, perhaps buy a beautifully produced 2013 Staff Exhibition sale catalogue from Sotheby’s, in which you will also find brief details of APP’s work?
A study published in the British Journal of Psychiatry has shown there has been an 11.5% reduction in average levels of discrimination.
Led by King’s College London’s Institute of Psychiatry (IoP), the study of England’s Time to Change anti-stigma programme (run by Mind and Rethink Mental Illness) provides the first evidence that it is possible to change the way the public treat people with mental health problems, but that a long term focus is needed to ensure that discrimination is removed from all areas of people’s lives.
A surprisingly high number of women have postpartum depressive symptoms, according to a new, large-scale study in the US.
This is the largest scale depression screening of postpartum women and the first time a full psychiatric assessment has been done in a study of postpartum women who screened positive for depression.
The study, which included a depression screening of 10,000 women who had recently delivered infants at single obstetrical hospital, revealed a large percentage of women who suffered recurrent episodes of major depression.
The study underscored the importance of prenatal as well as postpartum screening. Mothers’ and infants’ health and lives hang in the balance. The lives of several women who were suicidal when staff members called them for the screening were saved likely as a result of the study’s screening and immediate intervention.
Action on Postpartum Psychosis on behalf of the Maternal Mental Health Alliance has recently been awarded funds by Comic Relief to employ a Campaign Development Manager. The Campaign Development Manager, Emily Slater, is compiling key research about the impact of antenatal and postnatal mental illness, as well as working with a number of Alliance members and key stakeholders to develop an effective strategy for a future campaign (being launched, funding permitting, in spring 2014). The campaign is likely to call for all women in Great Britain to have equal access to quality treatment in the event of developing an antenatal or postnatal mental illness (including postpartum psychosis). The work of Emily and others is helping to ensure that this campaign call can be communicated in the most effective way to those policy-makers with most influence. It is an extremely exciting piece of work and APP is grateful to Comic Relief for funding this crucial development work.
For the second article in APP’s review of maternity services in the UK, Clare Dolman speaks to Debra Bick, Professor of Evidence Based Midwifery Practice at the Florence Nightingale School of Nursing and Midwifery, King’s College London, about how the services are working – or not working – for women with mental health problems.
Prof. Bick has long been interested in the particular needs of women with mental health problems during the perinatal period, and is outspoken about her concern that their needs are not sufficiently prioritized. When we meet at her London office, she cites the ‘Campaign for Normal Birth’ currently run by the Royal College of Midwives which is focusing on the promotion of normal births as an example of how postnatal needs are sometimes overlooked.
‘In that campaign, the focus is labour and birth and nothing really before and certainly nothing beyond’, she says. It is preparation and provision for the longer-term picture which is of especial importance for women who suffer psychiatric illness. Maternity services should promote a continuum of effective care through a woman’s pregnancy, birth and beyond. ‘We have these drivers in our delivery suites to make sure that 75% of women get one to one care in labour from a midwife, a target which means that managers will take midwives off the postnatal ward or from the community to achieve that, and so women don’t get the care when they’re going home and it’s quite dire actually’, she says.
As Trustees of Action on Postpartum Psychosis (APP), the national charity for severe postnatal mental illness in the UK, we would like to applaud the Sunday Times for publishing an article raising awareness of this little-known condition. We commend the bravery of each family who took part, and thank the Sunday Times for telling their stories in a compassionate and informative way.
The objective of APP is to ensure that high-quality information about Postpartum Psychosis is available to both professionals and members of the public. We feel it is important to make clear that infanticide is an extremely rare and tragic outcome of Postpartum Psychosis. Not all women with this diagnosis will experience thoughts or impulses of harming their baby. While understanding the need to emphasize the seriousness of this condition, we feel that the phrase “can turn mothers into murderers” is both misleading and stigmatizing.
Early warning signs of Postpartum Psychosis are often an inability to sleep, euphoria or high mood, or mixed episodes of both high and low (depressed) mood. It is incorrect to say that in most women the symptoms “pass within days or weeks”. The condition often escalates rapidly, and as such must be taken seriously and treated as a psychiatric emergency.
The good news, as Jo Lyall’s story illustrates, is that the majority of women who receive the right treatment do very well in their recovery and go on to bond with their babies and enjoy motherhood. The standard of treatment we believe should be available to all women is admission to a Mother & Baby Unit, and medication as well as psychological support.
Naomi Gilbert, Sarah Dearden, Clare Dolman, Andrea Lambert and Nicola Muckelroy - Trustees of APP with personal experience of Postpartum Psychosis
The national charity dedicated to supporting individuals and families affected by bipolar faces the threat of closing life-saving services as its income suffers in the economic downturn.
Although a small national charity, Bipolar UK’s reach and impact are vital – it supports more than 65,000 individuals every year. The charity provides crucial services including information and advice, self help groups, a mentoring service, a youth service and a web-based discussion forum for those affected by this devastating and widely-misunderstood illness. Bipolar causes severe mood swings from manic highs often involving hospitalisation and sectioning to suicidal lows. The illness increases the risk of suicide by up to 20 times.
Suzanne Hudson, Bipolar UK’s Chief Executive, says “We desperately need to raise funds to enable us to meet the substantial increase in demand we are witnessing.”
With high profile names like Stephen Fry, Sinead O’Connor and Bipolar UK’s patrons Bill Oddie and Paul Abbott, openly talking about their own experiences, many people now have the confidence to seek support from Bipolar UK to change, and indeed save, lives.
Young mum of three Zoe, has successfully been helped by Bipolar UK, “The Link Mentoring service absolutely changed my life – I now have a life and I like who I am. I’m not so afraid anymore. I owe my new life to Bipolar UK. They gave me and they gave my children a mummy.” The continued support from Bipolar UK for Zoe not only turned her life around but also her family.
Suzanne Hudson continues “The sad irony is that this funding crisis comes at a time when bipolar is beginning to be understood. As a result more individuals and families are finding the courage to seek our support. 2012 was unprec
Bipolar UK Patron, Bill Oddie “The public could be forgiven for thinking that bipolar only affects celebrities! The truth is that this severe illness can and does affect anyone and everyone, but only the famous faces get the publicity. If the services of Bipolar UK are diluted or lost, the consequences will literally be tragic.”edented in terms of the number of individuals contacting us for help and accessing our services. It is increasingly the case that individuals’ first contact with us is at a time of crisis involving intervention with emergency services.”
Bipolar UK desperately needs to raise over £100,000 in the next few weeks to continue providing vital services including Self Help Groups and Information & Advice. To make a donation call Bipolar UK on 020 7931 6480, click below, or text BIPO33 £3 to 70070.
Government initiative may highlight regional disparities in care provided to women who suffer a postpartum psychosis
A government initiative to find out new mothers’ views on the quality of the care they have received may highlight the regional disparities in care provided to women who suffer a postpartum psychosis.
Every woman who gives birth is to be asked to rate how the NHS looked after her, as part of a new government drive to improve the quality of maternity care, according to a report by Denis Campbell published in The Observer. [on 29 Dec 2012 – FYI]
All 700,000 women a year who have a child will get the chance to give feedback on how doctors, midwives and nurses cared for them, during one of the most stressful periods of their lives. The ratings will be then published as a way of encouraging hospitals and birth centres to ensure women get high-quality care.
Confirming the plan to the Observer, health minister Dr Daniel Poulter, who still works part-time as an NHS obstetrician at a London hospital, said it was part of the move to introduce a “friends and family test”, under which patients will be asked if they would recommend the care they have received to their loved ones. “This will introduce scrutiny and transparency into the quality of maternity care women receive,” said Poulter.
“It will bring under the spotlight the satisfaction and quality of care that mothers feel they have received at that particular maternity unit, whether that’s an obstetric unit in a hospital or a birthing centre where midwives are in charge. The idea is that hospitals really listen to what women say. If the feedback says that local women wouldn’t recommend it as a place to give birth and that there are concerns about that unit, then that’s a very strong lever to encourage or force improvements in care,” he said.
The “friends and family test” will first be brought in for all patients who arrive in A&E or are admitted as acute cases from April. They will be asked: “How likely is it that you would recommend this service to friends and family?”
Mothers, though, are to be asked more detailed questions, or to rate the care they have received at different stages throughout their pregnancy. The areas will include how they were treated by antenatal staff during their labour and how they were counselled over key tasks in the days after birth, such as learning how to breastfeed and any emotional support they may have received.
The feedback will cover a woman’s entire experience of the NHS, from when her 12-week scans confirms the pregnancy to the help she gets if she ends up suffering postnatal depression, and support from community midwives after she returns home.
The Royal College of Midwives, Department of Health and the new NHS Commissioning Board, which will assume responsibility for running the health service from April, are devising exactly what questions should be asked, how and when. The new scheme will be tested in early 2013 in four hospitals, including St Thomas’s in central London, which already use questionnaires to collect mothers’ opinions. It will then be introduced from October at all 150 hospital trusts which provide maternity care.
Cathy Warwick, chief executive of the RCM, which represents the 30,000 midwives in England, agreed that the move would help women decide where to give birth. “It will lead to women choosing places where they believe they will get high-quality care or go for a home birth or to a midwife-led unit, if these are rated positively by women. Last year’s birthplace study showed that women with low-risk pregnancies were more satisfied if they had a home birth or used a midwife-led unit than an obstetric unit”, said Warwick.
Sally Russell, a co-founder of the Netmums website, welcomed the move. “What prospective parents want to know is about the experience others have had, not just the facts and figures around quality of care”, she said.
Mothers should be asked for feedback when they are being discharged or soon after they get home, as they may feel reluctant to be honest while still being cared for in case that affected their treatment, Russell added.
The feedback will inevitably highlight the ongoing shortage of midwives, which the RCM warns is hindering the efforts by the NHS to properly look after the growing number of women giving birth during a decade-long baby boom, added Russell.
But Poulter said that midwives and other maternity staff should not be anxious. “From working in maternity care myself, I welcome feedback from women and their families. As a doctor or midwife you want to know if you can do better. You need to know that”, he said.
Study suggets the use of anti-depressants during pregnancy is not linked with increased risk of stillbirth or infant death
In a study that included nearly 30,000 women from Nordic countries who had filled a selective serotonin reuptake inhibitor (SSRI) prescription during pregnancy, researchers found no significant association between use of these medications during pregnancy and risk of stillbirth, neonatal death, or postneonatal death, after accounting for factors including maternal psychiatric disease, according to a study in the January 2 issue of JAMA (Journal of the American Medical Association).
Olof Stephansson, M.D., Ph.D., of the Karolinska Institutet, Stockholm, Sweden and colleagues conducted a study to examine whether SSRI exposure during pregnancy was associated with increased risks of stillbirth, neonatal death, and postneonatal death. The study included women with single births from all Nordic countries (Denmark, Finland, Iceland, Norway, and Sweden) at different periods from 1996 through 2007. The researchers obtained information on maternal use of SSRIs from prescription registries; maternal characteristics, pregnancy, and neonatal outcomes were obtained from patient and medical birth registries. The authors estimated relative risks of stillbirth, neonatal death, and postneonatal death associated with SSRI use during pregnancy taking into account maternal characteristics and previous psychiatric hospitalization.
“The present study of more than 1.6 million births suggests that SSRI use during pregnancy was not associated with increased risks of stillbirth, neonatal death, or postneonatal death. The increased rates of stillbirth and postneonatal mortality among infants exposed to an SSRI during pregnancy were explained by the severity of the underlying maternal psychiatric disease and unfavorable distribution of maternal characteristics such as cigarette smoking and advanced maternal age.”
“However, decisions regarding use of SSRIs during pregnancy must take into account other perinatal outcomes and the risks associated with maternal mental illness,” the researchers conclude.
There has been a lot of discussion about the patchiness of perinatal services across the UK: some areas have very good services and excellent Mother and Baby Units while others have little or no service to speak of.
Clare Dolman talks to psychiatrist Dr. Jenny Cooke, who has been trying to improve access to services in her area of East Sussex.
When Dr. Cooke became a higher trainee in psychiatry four years ago, she was surprised at the lack of specialist help for expectant mothers with mental health problems. ‘As a trainee psychiatrist we are allocated time to develop an area of specialist expertise and I was very interested in perinatal psychiatry’, she says. ‘Fortunately, the local Mental Health Commissioning lead was a GP who shared my interest so we undertook some research to find out what the current clinical pathways were for women with psychiatric needs in the perinatal period. We talked to all local professionals – psychiatrists, midwives, health visitors and community psychiatric nurses – about where they refer in to services and what the problems were’.
She found many gaps. ‘Many professionals didn’t know how to refer women on, the system was very unwieldy and complicated, and even if a woman got referred to a psychiatrist, he or she often didn’t have any specialist training in perinatal treatment. It was really hit and miss’.
‘I discovered that one of the obstetricians who had an interest in mental health had set up her own clinic for midwives to refer into but she was a bit overwhelmed so in my ‘Special Interest’ time, I started helping her. It was only one morning every fortnight and sometimes we were seeing women with minor anxiety whereas women with bipolar disorder or schizophrenia who had been well for some time and so been discharged from the system but were now pregnant and so at high risk of illness, were being missed’.
Dr. Cooke could also only see women antenatally so it was impossible to have continuity: ‘We had to think about how we could improve the care pathway so we got a steering group together and are working with local mental health and maternity commissioners who see that this is a priority. We’ve improved the Midwives’ Booking Form, and we’re hoping to provide some mental health training for them so that they can recognize the women who are at greatest risk even if they appear well. Funding for my time has been doubled to one morning per week for up to a year, which will allow psychiatrists, health visitors and GPs to refer in directly’, she says.
If women do suffer from a severe postpartum illness, there is no NHS-provided Mother and Baby Unit for them to go to: they have to be sent to a private unit in Eastbourne, which is difficult to refer into and so not used as much as it could be.
Dr. Cooke is keen to see the perinatal clinic go on developing: ‘At the moment we can’t of course respond to emergencies and, as demand grows, one morning a week will not be enough to see everyone. I am hoping we might be able to have a psychiatric nurse linked to the clinic to be a more regular point of contact, and who can visit those women in the community who can’t make it into the clinic for whatever reason’.
She supports APP’s campaign to impress upon funding bodies that good perinatal care should be a priority as it not only helps to keep mothers well and give children the best possible start in life but, if seen in terms of preventing lengthy hospital or MBU admissions, it can also prove cost-effective in the long run. ‘Our local commissioners have been very supportive but, as we all know, funding is very stretched at the moment, and so we have to be hopeful that the importance of this service is recognized’, says Dr. Cooke.
She feels it is important for both clinicians and NHS consumers around the UK to do what they can to bring this to the attention of their local commissioners. ‘We have had the NICE guidelines since 2007 saying that we should be providing these services but in so many areas of the country they don’t exist, ‘ she says. Perhaps it will take local campaigning from enthusiastic health professionals like Jennifer Cooke, supported by charities such as APP and the newly-formed Maternal Mental Health Alliance, to get more of them in place.
Lancet editorial on the stigma of perinatal mental illness 10/11/12.
Last week, it fell to a judge in a UK court to decide the fate of a woman who had killed both her children, while suffering from postnatal depression. The court heard from three psychiatrists who gave evidence that Felicia Boots, who suffocated her 14-month-old and 10-week-old children, had postnatal depression. She had stopped her prescribed antidepressants because she was convinced that the drugs would harm her baby through her breast milk and feared that her children would be taken away from her. Justice Fulford said: “A prison sentence would be wholly inappropriate in this case…I unreservedly accept that what she did to the two children, that she and her husband loved and nurtured, were the results of physical and biological factors beyond her control.” The verdict was manslaughter due to diminished responsibility (murder charges were dropped), and the outcome is inpatient psychiatric treatment…Read more>>
Engaging with the media can be a good way of raising awareness about Postpartum Psychosis and getting information out to health professionals and the general public. However, deciding to talk openly about PP requires careful consideration. During the workshop, we’ll hear from women who have shared their stories, whether in a magazine, newspaper or on the radio; hear how they felt it went, and discuss the issues to consider when engaging with the media. Producers and journalists will tell us about their motivations, how they approach stories and what makes things work for their outlets. We’ll learn about ways of preparing for interview, the art of ‘story telling’ and building confidence, and we’ll discuss any anxieties people have about dealing with the media. We’ll have an update on the latest facts and research about PP, and start to develop APP’s media strategy for raising awareness of PP.
For those who wish to, there will be a chance to practice being interviewed for broadcast and for print, with individual feedback from professionals. Over the 2 days we will develop audio and video podcasts for the APP website on a range of topics determined by you. Aside from the ‘work’ part of the workshop, it will be a good chance to get to know more about APP and meet other APP members. The workshop will be informal, friendly and low stress – no role playing or audiences to watch you have a go!
When: The course will take place over 2 days on Friday 19th (11am – 5.30pm) and Saturday 20th October (9.30am – 3.30pm).
Where: University of Birmingham, Edgbaston campus, Birmingham.
Who: A group of 8 women who have all experienced PP and expressed an interest in helping to increase media coverage of PP and developing resources to raise awareness of PP. The workshop is being organised by Dr Jessica Heron (Vice Chair – Action on Postpartum Psychosis; Perinatal Research Fellow – University of Birmingham) and Lucy Vernall (Media Coordinator – Action on Postpartum Psychosis; IdeasLab Project Director, University of Birmingham).
Funding: The workshop is funded by the Big Lottery. We are able to cover participant’s travel expenses, accommodation on Friday night, meals, and other costs necessary to attend the course (such as childcare).
Accommodation: Friday night’s accommodation will be in University of Birmingham Conference Facilities
Contact: If you would like further details about taking part in the workshop, please contact Jessica Heron: firstname.lastname@example.org
As part of the Bipolar Awareness Day 2012 series, Psychiatrist Dr Ian Jones talks to Clare Dolman, Chair of Bipolar UK, about how bipolar can affect women, particularly during pregnancy and after birth.
Click Here to visit the The Royal College of Psychiatrists website & listen to the podcast.
Our ‘More than baby blues?’ presentation at the Cheltenham Science Festival this year was very well received with a turnout of nearly 100 people. Considering the damp, cold and very blustery night, we were impressed by the audience’s stamina!
Tracy spoke very honestly and was forthright about the horrors – and the humorous aspects of her experience of PP – thank you Tracy.
The response the three speakers, Dr Ian Jones, Clare Dolman and Tracy Vicker received was excellent, with plenty of interesting questions from the audience at the end. People came up afterwards to thank us for a very informative talk and said they felt they had a much better understanding of the condition than previously.
Well done and thank you to the speakers, supporters and organisers. Also, a big thank you to all those who attended, we hope you enjoyed it as much as we did!
I would really like to chat with you about your experience of Postpartum Psychosis. What was it like for you and your family following your diagnosis? And what types of services/support were made available to you? This should take no more than an hour and I am happy to meet wherever is most convenient for you.
If you are willing to take part in the study or would like more information, please email me, Catherine on email@example.com or phone Claire Wickham on 0208 223 4174 to leave a message.
National Conference 2012, Saturday 23rd June
The keynote speaker is Paul Abbott, Bipolar UK Patron, and one of the country’s most critically and commercially successful television writers, responsible for creating highly acclaimed, popular television dramas such as Shameless and State of Play.
Places are limited and will be allocated on a first come first served basis. Bipolar UK members receive a discounted delegate fee of £25. Non-Bipolar UK Members: £50. Organisation exhibitors: £150.
The full programme and application form is available from Bipolar UK’s website www.bipolaruk.org.uk
Alternatively please call Bipolar UK on 0207 931 6480
Following the airing of ‘Unravelling Eve’ program on BBC Radio 4, the feedback we have received has been tremendous. The program was extremely well received by people from all backgrounds and interests and many have been in touch expressing their gratitude to everyone involved for their time and efforts in making it happen.
The women who took part in the workshops also received a great deal of positive and supportive feedback from friends and family. Having listened to the program, they now have a greater understanding of the challenges the women went through, and some friends were surprised by how little they already knew. We are very grateful to everyone who took part and appreciate how difficult and emotional it can be to speak about things they have probably never spoken about before. There was an instant rapport amongst the women and very quickly strong friendships formed. They all reported that taking part was a fabulous opportunity to finally meet and chat freely with others who instantly understood. They described the workshops as an extremely positive experience, emotional yet healing and cathartic. The program is available to listen to by Clicking here.
Between one in 500 and one in a thousand women suffer from postpartum psychosis after childbirth. It’s an illness which often appears rapidly and without warning and leaves women in the grip of psychotic delusions or of mania. They talk of losing touch with reality and feeling split and fragmented. However, because it’s comparatively rare and can happen to women with no history of mental illness, postpartum psychosis may go undiagnosed or be confused with post natal depression. In fact if it’s treated properly, recovery from this very severe disorder can be very swift.
Now Radio 4 has been offered unique access to a group of women who have experienced the illness. They’re taking part in an art project, funded by the Wellcome Trust, whose aim is to raise awareness of the condition.
As they meet at a workshop and in the artist Joan Molloy’s studio they talk openly about what they went through, the hallucinations they suffered in the depths of the psychosis and their journey back to health. They also tackle the difficult topics of whether they wanted to harm themselves or their baby, the decision about whether to have a second child, and their perception of themselves as mothers.
The art project is supported by leading perinatal psychiatrist, Dr Ian Jones, who is working with teams in Cardiff and Birmingham universities to try to discover what it is about the physical experience of childbirth that triggers the illness. He tells us if they were able to establish whether some women had a genetic pre-disposition to the condition, it would be possible to predict which women were at high risk and to take the right steps before rather than after the illness has struck.
Presented by former journalist – Clare Dolman, who suffered an episode of postpartum psychosis herself after the birth of her first child twenty two years ago. She is a trustee of Action on Postpartum Psychosis and now works to raise awareness of the disorder.
Producer: Philippa Goodrich
A White Pebble Media production for BBC Radio 4.
Congratulations to Steph Brackpool and Mark Cox (Ward Manager of the MBU at Birmingham) for completing the Cardiff Half Marathon on behalf of APP. Steph hit 60 years old in January this year and has not done a competitive run before. This was Mark’s first run too. Steph’s and Mark’s fundraising sites at Virginmoneygiving will remain open for another month. So far they have raised over £1200 for APP. Steph writes about her experience here. If you would like to join the APP running team and help to raise money for APP get in touch with Heather, Sue or Nicola at firstname.lastname@example.org
APP are delighted to be working with artist Joan Malloy on this exciting Wellcome Trust funded arts project. Joan is developing a body of work which reflects upon issues of motherhood, inheritance and the familial implications of PP. A weekend workshop earlier this year allowed Joan to hear the experiences of a number of women from APP. The work is progressing well and has been the subject of a Radio 4 documentary that aired on December the 4th 2011. We are very excited about this project and look forward to sharing with you the work that is produced next year.
Joan’s past work has been an exploration of time, focussing on memories of childhood, family relationships and ageing, through a combination of photography, film, object-making and installation. Following years where her work has focused on family relationships – exploring shared experience from multiple perspectives – the work with APP will be a natural progression – exploring the shared experience of motherhood from the multiple perspectives of those who took part in the workshop. Joan’s intention is to create work which includes an arresting piece of film, which encapsulates the genetic science and values the personal narrative accounts from women from APP who have participated in the project.
The BSMHFT Perinatal Mental Health Research Conference in collaboration with Action on Postpartum Psychosis and the Marce Society will take place on July 8th 2011 at the Birmingham Medical Institute. All are welcome! Speakers include: Professor John Cox (identifying postnatal depression), Dr Margaret Oates (the most recent Confidential Enquiry into Maternal Deaths); Dr Ian Jones (postpartum psychosis); Dr Carol Henshaw (normal emotional changes following pregnancy); Dr Dawn Edge (considering BME issues); Dr Jess Heron (Mother and Baby Units), Dr Amanda Daley (exercise and PND); Dr Jo McCleery (infant health), Sukhi Sembi (peer support), and many more. Places are limited, so book asap to reserve a place. For further information and a booking form, contact: Shazia.email@example.com
Early in 2010 we set about applying for formal charitable status to help us raise money for research into PP and APP projects. We are nearly at the finish post, and will have a charity number in early 2011. We thank Heather and Sue for their dogged determination with the process and paperwork. We now have a formal structure with a steering committee, chair, vice chair, secretary, and treasurer.
Until now, Ian and I have answered emails from members in an ad hoc way. Over the next year, Nicola Muckelroy will be setting up a Peer Support Network using trained volunteers who have recovered from PP themselves. Initially they will offer support to women and their families via email. People should telephone the Cardiff office to join APP, for information about peer support, or for signposting to resources and sources of advice.
In terms of research, we have had an exciting year. Our molecular genetic work is producing interesting findings, including overlaps with another pregnancy related condition, pre- eclampsia. Ian explains more about these exciting findings on the research page. We have produced the first piece of formal evidence from our postnatal care survey that Mother and Baby Units are more appropriate than general psychiatric units for women with illness following childbirth. We are also leading the way in terms of ‘service-user’ research, with a publication due out next year and presented at UK and international conferences.
Plans for 2011 include a postal survey and telephone interview study of the experiences and support needs of partners during an episode of PP. A media training workshop is planned offering women who wish to raise awareness of PP the chance to practise with real equipment and experienced trainers. Rachel’s study on changes in identity after PP will be complete next year. A study of second pregnancies is recruiting women who are pregnant or planning pregnancy, and, of course, our large scale studies of the causes and genetics of PP will continue to produce exciting results.
APP was represented at several conferences in 2010, both nationally and internationally. We started off in London in March at the Mental Health Research Network’s (MHRN) Service Users’ Annual Conference. Delegates at the day-long event visited the APP display and took newsletters away with them to spread the word about our new website. Even more people did the same at the two-day Scientific Conference of the MHRN in April which was held at Bristol.
In June we had a whole team attending the annual Conference of MDF the Bipolar Organisation held at Birmingham University’s Medical School. Because of the high risk of postpartum psychosis for women with bipolar, our stand attracted a great deal of interest from women and their partners eager to find out about the risks and the best way to cope with them.
In the Autumn, we ventured further afield to Pittsburgh, USA, for the Biennial International Conference of the Marcé Society. The Society was named after Louis Victor Marcé, a French psychiatrist who wrote the first treatise entirely devoted to perinatal mental illness, published in 1858. Its principal aim is to promote, facilitate and communicate about research into all aspects of the mental health of women, their infants and partners around the time of childbirth. With hundreds of delegates from all over the world attending, this was a great platform to tell people about APP and make them aware of our resources for women who have suffered postpartum psychosis – and for health workers who need to learn more about the condition.
I gave a presentation telling delegates about the work on recovery that members of APP produced with Dr Jess Heron and a team of researchers in Birmingham last year. Dr Jess Heron gave a presentation about ‘Women’s satisfaction with Mother and Baby Unit care versus other models of postpartum psychiatric care’. Dr Jones gave a keynote speech about new research into Postpartum Psychosis. There was a lot of interest, especially from American colleagues, in the potential of the APP website as a source of support and information for women in this situation wherever they live in the world. APP got another mention on the main stage when Dr. Ian Jones accepted the Marcé Medal for his outstanding contribution to perinatal psychiatric research.
We are extremely grateful to the Mental Health Research Network Heart of England Hub for providing a small grant to enable women with experience of PP to attend and present research at UK and International conferences.
APP again featured at the annual conference of MDF the Bipolar Organisation held in London.
Rachel Perkins OBE was among the speakers, and workshops will included a Q & A session on medication with MDF Bipolar Vice Chair Dr Nick Stafford, advice on benefits and allowances, and a discussion forum led by Professors Nick Craddock of BDRN and Steven Jones of the Spectrum Centre.
There was also be a workshop entitled Thinking about Motherhood: Bipolar, Pregnancy and Childbirth led by Dr Ian Jones, Reader in Perinatal Psychiatry at Cardiff University and Clare Dolman MDF Bipolar Chair of Trustees – both members of APP’s Board.
We were delighted to support MDF the Bipolar Organisation – the only national charity for people affected by this disorder – in the staging of their conference and really enjoyed a fascinating day – and a great chance to network!
In October this year over 500 researchers, health professionals and mental health advocates gathered at the biennial Marcé Society Conference in Pittsburgh, USA to share new research in the understanding, prevention and treatment of mental illness related to childbearing. The Conference was opened by US former first lady Mrs Rosalynn Carter and included over 140 talks related to perinatal mental health.
The Marcé medal is awarded every two years to an individual in recognition of a major contribution to the aims of the society. This year, we are very proud to announce that it was awarded to Dr Ian Jones in recognition of his research into Postpartum Psychosis. Ian’s keynote presentation was entitled “Postpartum psychosis: known knowns, known unknowns, and unknown unknowns”.
Dr Jones said “I am delighted that the work of our research group has been recognized with the award of the Marcé Medal. Postpartum psychoses are some of the most severe episodes seen in psychiatry. It is vitally important that we understand more about this condition, so we can develop better treatments and provide hope to women and their families.” Ian becomes president of the UK & Ireland Marcé Society this year.
Gaynor believed in making a difference. She was a passionate advocate for research, believing that we must do everything we can to understand puerperal psychosis and bipolar disorder: the condition that finally took her life. She was a “Research Champion” for the Bipolar Disorder Research Network (BDRN) and advisor to Action on Postpartum Psychosis (APP) making an invaluable contribution to our work. Gaynor featured in the Stephen Fry documentary “The Secret Life of the Manic Depressive” discussing the difficult decisions that she and other women face when considering pregnancy. Although the documentary was unable to do justice to our complex discussions, she believed that it was important that the issues were raised. She believed in better services for women making difficult choices regarding pregnancy.
Last year we chaired a workshop at the national MDF conference on pregnancy and childbirth. The room was packed and the discussion heated but when Gaynor spoke about her experiences, everybody listened. Al- though she was very unwell after his birth, it was obvi- ous to me that she was a wonderful and devoted moth- er to Thomas. Her untimely death reminds us that this illness can be cruel and heartbreaking. She became a colleague and friend to us at APP and will be greatly missed.
Ian Jones on behalf of APP