Category Archives: News

MIND READING: The Power of Personal Story

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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:

2018_Mind-Reading-conf-3In 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?

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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 at the Wales PMH launch!

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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.

2018_Cardiff Sally Jones 2dSally 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: app@app-network.org

APP seeks Peer Support Facilitator for Lancashire & Cumbria!

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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.

Celebrating World Maternal Mental Health Day in Sheffield!

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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.

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A moment to celebrate!

photo courtesy of The Guardian

photo courtesy of The Guardian

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.

You can read more about the announcement via the following online News websites:
The Guardian
The Sun
Huffington Post
The Times
BBC News
Sky News

APP is seeking a Treasurer

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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.

The impact of Eastenders…

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.

QualExplorationofTV_APPauthorsMar2018The 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.

You can read and download the full article here or access online here.

 

Bipolar and pregnancy: decisions, decisions, decisions…

APP trustee Clare Dolman reports on her PhD which some APP members kindly contributed to.

liz bumpIf 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:

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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.

Clare Dolman
Chair Bipolar UK 
Vice Chair Maternal Mental Health Alliance
Trustee Action on Postpartum Psychosis

You can read some of the results of Clare’s research in the British Journal of Psychiatry here

Clare and daughter Ettie

Clare Dolman and her daughter, Ettie.

An invaluable visit to Bluebell!

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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.

APP Peer Support Volunteer training in Bristol!

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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.”

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Jocelyn:
“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.