Action on Postpartum Psychosis

APP are very lucky this year to have three runners taking on the challenge of the TCS London Marathon on Sunday 2nd October.

All of them have been training (and fundraising!) hard for months and are looking forward to the big day!

Debbie Sells is the Ward Manager at the Margaret Oates MBU in Nottingham, so APP is a cause close to her heart. She says 'I am in the privileged position to nurse women at a very frightening and horrendous time in their life, but to see them recover and enjoy family life with their children.'

Read more about Debbie and add your support here: https://tcslondonmarathon.enthuse.com/pf/deborah-sells

Vanessa Gutteridge is running for APP as she was diagnosed with postpartum psychosis after the birth of her son eight years ago. She is keen to raise awareness of the illness, as well as vital funds.  She says: 'It took me years to recover and I still often think about the milestones of Archie that I missed, mostly in his first year or so and it hits me how poorly I was but im so grateful for the support I had when he was born and the years after.'

Find out more about Vanessa's story and support her here: https://tcslondonmarathon.enthuse.com/pf/vanessa-guttridge

Sara Fernandes will be taking on a slightly different challenge - she's still completing the full 26.2 miles on the 2nd October, but instead of doing it on the streets of London, she'll be taking part in the virtual version around her home town of Anglesey.

Sara was hospitalised with PP when her baby was just 5 days old. She says 'Organisations such as APP (Action on Postpartum Psychosis) are like gold-dust. With it being such a rare illness with a quick onset, there's very little support out there.... Most people have no warning of what the illness looks like, what to do when symptoms present themselves or where to go for help. That's why APP are amazing! They have a range of services that support both the individuals suffering and their families. They help women feel understood, signpost, listen, advise, empower and ultimately save lives!' 

You can read more about Sara's journey and offer your support here: https://www.justgiving.com/fundraising/sara-fernandes86

It's a massive commitment to train and complete a full marathon so a huge thank you to all our amazing runners, and to everyone who has supported them so far - every donation makes a difference, and we're sure knowing they have raised so much will keep our runners going all the way to the finish line!

Members of the Action on Postpartum Psychosis (APP) team, including staff, trustees and ambassadors, will be speaking to a global audience of expert researchers later this month as part of the International Marcé Society for Perinatal Mental Health Conference. 

The conference takes place between Monday 19th and Friday 23rd September and will welcome leading experts in perinatal mental health from institutions and organisations around the world. The Society is led by a board of experts including APP’s very own trustee, Professor Ian Jones, who also serves as the conference’s co-chair.

Having the opportunity to speak at such an event will enable us to share best practice and stimulate conversation specifically around postpartum psychosis (PP), raising awareness of the illness, as well as our campaign asks, amongst a much wider pool of academics and health professionals. The more researchers and professionals we get talking about postpartum psychosis, the more collective power we have to build knowledge, effect change, challenge stigma and improve services for women and families affected.

The two sessions APP will be involved with or leading are:

What do women and families need from perinatal mental health services? 

This session will be chaired by Dr Clare Dolman (APP trustee and Vice Chair for the Maternal Mental Health Alliance) and feature our brilliant ambassador Laura Dockrill, who will be sharing her personal experience of PP, as well as our National NHS Contracts Coordinator, Hannah Bissett, who will be speaking about the value of peer support in perinatal services. They will be joined by Dr Henry Fay – a former GP with experience of PP as a partner, and current trustee with the Maternal Mental Health Alliance.

Postpartum psychosis: strategies and collaborations to increase knowledge, address stigma and improve care globally

This session will be chaired by our CEO Dr Jess Heron and will feature discussion from Hannah Bissett as well as Dr Sally Wilson, APP’s National Training and Research Coordinator. The APP team will present evaluations of some of APP’s projects including: APP’s health professional training in PP; peer support services; and the ongoing campaign for Mother & Baby Units. The discussion will focus on exploring the ingredients for lasting impact, lessons learned, and how this learning might be used to influence care for women and families affected by PP globally.

About the International Marcé Society for Perinatal Mental Health

The International Marcé Society for Perinatal Mental Health was formed at an international conference in 1980. The purpose of that conference was to bring together different strands of research in puerperal mental disorders. It was recognised that there needed to be a forum to discuss puerperal mental illness in its broadest sense, and as such the Society was formed. The Society was named after Louis Victor Marcé, a French psychiatrist who wrote the first treatise entirely devoted to puerperal mental illness, published in 1858.

Other notable sessions at this year’s conference include Postpartum Psychosis: Cross-cultural conceptualisation in Malawi, India and the UK; Advances in the Pharmacology of Mood Disorders during Pregnancy; Offspring of parents with Psychosis: Pre-postnatal indicators of risk and resilience; Consensus and Controversies in the classification of Postpartum Psychosis in DSM-V; as well as a session focused on fathers’ mental health: Fathers’ Perinatal Experiences, Mental Health and Impact on Family Health.

One of the key aims of this year’s conference is to highlight the UK’s best practice in lived experience involvement, and encourage this trend internationally. The conference events will take place both in London and virtually.

Find out more about the conference here

The conference itself is no longer taking delegate bookings, however, we’ll be sharing some of the key highlights and things we’ve learned, so watch this space for more info.

To join the APP network and sign up to our newsletter click here

If you’re attending the conference, please do join in the discussion on social media by using the hashtag #Marce22 and tagging us @ActiononPP

Sisters Laura and Helen have taken part in various events this year to raise funds for APP culminating in the Great North Run, which took place on Sunday 11th September.

Following the sad news of the death of Her Majesty Queen Elizabeth II, there was some last minute uncertainty about whether the run would go ahead, but organisers decided an event that brought people together and raises millions for charity would be a fitting tribute to the late Queen.

Laura and Helen were really pleased that the run went ahead, and both completed it in brilliant times. Not only that, between them, they raised nearly £2,000 for APP - an amazing achievement - and definitely deserved their medals!

A huge thank you to both of you from all at APP.

Trichana Rai from Colchester has chosen to take on a mammoth challenge for APP - aiming to run 300km in six months.

Trichana had postpartum psychosis after the birth of her son in 2014. Like many affected, before being diagnosed herself, she had never heard of PP.  She was hospitalised in an MBU for one and half months.

She says of that time: "I was so poorly. I couldn't take care of my son and myself. I was very weak mentally and physically. I used to be tearful without any reason, I couldn't sleep and my appetite had gone down gradually. I even thought sometimes there is no reason to live."

Trichana is now fully recovered.

She says "Those moments were very difficult and challenging for me and my family, but I have learned and experienced there is always bright light after a thunderstorm."

She is running to help other mums affected by PP. Thank you so much Trichana.

If you'd like to follow Trichana's journey, or offer your support, she regularly updates her justgiving page here: www.justgiving.com/fundraising/Trichana-Rai

A HUGE thank you to the teams at the Morpeth Mother and Baby Unit, Exeter Mother and Baby Unit and the Pennine Specialist Perinatal Community Mental Health Team who held our first #APPTheBigBake events this week!

All the teams raised vital funds for Action on Postpartum Psychosis (APP) and awareness of postpartum psychosis while having a great time and enjoying some delicious bakes!

At Beadnell Ward, Morpeth Mother and Baby Unit, APP's Morpeth peer support team have been baking with the mums. Our sessional peer supporter Kerry has enjoyed making lovely cakes (the pink cupcakes pictured) and a sunny walk with the mums. Baking is always a popular activity and we hope you agree that the finished results look delicious too!

Do you fancy holding your own Big Bake event? Get in touch and we'll send you your free The Big Bake pack.

Find out more: www.bit.ly/APPTheBigBake

APP has contributed to a Government call for evidence to inform the first ever Women’s Health Strategy for England which was published on 20 July 2022. We asked the Government to ensure that the strategy improved the lives of women affected by postpartum psychosis through continued investment in specialist perinatal mental health services, prioritising research into PP and improving support for women with PP during the menopause. We welcome these pledges, however committed funding is needed and we will continue to campaign for the needs of women with PP to be addressed in implementing this strategy.

Perinatal mental health services

“The package includes £100 million for bespoke parent-infant relationship and perinatal mental health support. We are increasing provision of specialist community perinatal mental health services, which provide care and treatment for women with moderate to severe or complex mental health needs, and support the developing relationship between mother and baby. They also offer women with mental health needs advice for planning a pregnancy. The Long Term Plan commits to at least 66,000 women with moderate to severe or complex perinatal mental health needs having access to specialist community care”

Research

A recent study found that although affecting 20% of women, perinatal mental health receives only 4% of all research investment in pregnancy. The Women’s Health Strategy sets a 10-year ambition that “there is more research into women’s health issues – for example, gynaecological conditions, menstrual health, fertility, pregnancy, menopause and post-reproductive health – which leads to a greater understanding of conditions that impact women and how we can meet women’s health needs”.

Menopause

The Government has set a 10-year ambition that “women can access high-quality, personalised menopause care within primary care and, if needed, specialist care in a timely manner, and disparities in access to menopause treatment are reduced” and that “healthcare professionals in primary care are well informed about the menopause, and able to offer women evidence-based advice and treatment options, including HRT and alternatives”

APP welcomes The Women’s Health Strategy for England pledge to invest £100 million in community perinatal mental health services and parent-infant support. We continue to campaign for equal access to MBU beds across the UK.

Changes to the Mental Health Act - what do they mean for women with PP and their families?

APP took part in a Government consultation on changes to the Mental Health Act in January 2021. The Mental Health Act is the legal framework for detaining a person for mental health treatment (being “sectioned”). As PP can escalate quickly and women with PP may lack capacity to make decisions about their own treatment, many women are admitted to hospital under the Mental Health Act.

A draft Bill was published in July 2022 and we are pleased to see the following changes which are especially relevant to families affected by PP

• There is a greater focus on patient choice and autonomy in making decisions about what treatment they would want if they should lose capacity.
• Patients can draw up an ‘advanced decision’ which explains their treatment preferences, and appoints a ‘nominated person’ to advocate for these treatments if they are detained. This can be a partner, family member or friend. The advanced decision is valid if signed by the patient, nominated person and a health professional.
• Any admission to hospital under the Mental Health Act should have a clear therapeutic benefit.
• Patients needing to be detained can no longer be held in a police cell or prison when waiting for assessment.

APP highlighted that we believe a perinatal mental health professional should be consulted in decisions to detain a woman with PP. In our experience, other mental health professionals may not be aware of the level of risk in PP, and the way that symptoms can ‘come and go’ in the early stages of the illness. This means that a woman may be assessed as having capacity or low risk when this can quickly change - causing delays to the urgent admission she needs.

APP also stressed that women with PP should always be admitted to a specialist Mother and Baby Unit as these provide specialist skills and a clear therapeutic benefit for the whole family unit. We believe that the separation of mothers and babies in general psychiatric wards goes against the principles of the new Mental Health Act.

We are very grateful to families with personal experience of bereavement due to PP who courageously shared their experience with us to include in our submission to the Government.

APP welcomes the new draft Mental Health Bill which protects the rights of women with PP who are sectioned to treatment with ‘clear therapeutic benefit’. APP has advised that all admissions under Mental Health Act for women with PP should be to a MBU.

We are delighted to announce that author and literary agent, Catherine Cho, is now an official APP ambassador.

Inferno: A Memoir of Motherhood and Madness, Catherine’s critically-acclaimed book about her experience of postpartum psychosis (PP), was published in 2021, providing readers with a poetic, honest and raw account of the illness and inspiring hope in recovery.

Catherine, who was shortlisted for the 2020 Sunday Times Young Writer of the Year Award, joins APP ambassadors poet, author and illustrator, Laura Dockrill (who experienced PP in 2018), and her husband, Hugo White (a musician and record producer, formerly of The Maccabees), to raise awareness of the illness.

PP is a severe and debilitating postnatal mental illness, triggered by childbirth, affecting 1,400 women in the UK and 140,000 women in the world each year. Half of all cases occur ‘out of the blue’ - with women having no history of mental illness. Symptoms include hallucinations, delusions, mania, depression, restlessness, anxiety, confusion, and unusual behaviour. With the right treatment, women can make a full recovery.

Catherine said: “It is important for me to become an APP ambassador, because it is so important to be open about postpartum psychosis. Maternal mental health, particularly postpartum psychosis, is something that holds so much stigma and shame, which makes it even more of a frightening and isolating experience. I hope that I can help APP in sharing my story and the stories of others. When I was in the midst of recovery, I couldn't imagine becoming well, but it was in finding this community and the kindness of others who were so open in sharing their stories that I could begin to hope that this would, one day, be a story from my past.”

 Jess Heron, CEO, Action on Postpartum Psychosis said: “Catherine has already done so much to raise awareness and challenge the stigma surrounding PP, not only through her book, but also through speaking in the media and at events. We are delighted to formalise and celebrate Catherine’s role with us, recognising the vast amount of work she continues to do.

“Suicide is the leading cause of maternal death in the UK. If we are to reach government targets of halving maternal deaths by 2030, more needs to be done. Women from black, Asian and minority ethnic communities report poorer experiences and barriers to care. Catherine’s networks and storytelling will help our charity deepen the discussion around the culture, community and stigma in the experience of PP, and begin to influence support for women affected by PP in the UK and around the world.”

APP is a collaboration between inspirational women with lived experience, world-leading academic researchers and specialist health professionals. Hosted by The University of Birmingham, APP runs an award-winning UK-wide peer support network, including a forum with over 2,800 users sharing experiences and receiving support; develops comprehensive patient information; trains frontline professionals; manages four NHS partnership contracts providing direct support to women in Mother and Baby Units; conducts awareness raising media work and facilitates research into the causes and treatments of the illness.

The charity also regularly works with authors, playwrights and screenwriters to raise awareness and tackle stigma, including supporting the publication campaigns of both Catherine and Laura’s memoirs. APP has supported a range of other fiction and non fiction books that explore postpartum psychosis including: A Secret Never to Be Told by Alison Cobb, Five Days Missing by Caroline Corcoran  and Are You Really OK by Stacey Dooley.

APP has supported a wealth of research on PP and will this year be publishing results of its second 10 year survey of care for PP in the UK, comparing Mother and Baby Units to General Psychiatric Units, and the charities’ 10 year impact report.

 Read more about Catherine’s story here

Laura Kirkpatrick and her sister Helen Long are undertaking several challenges this year to raise funds for APP.  They have completed a Tough Warrior event, Laura has run the Great North 10K and both of them will be running the Great North Run in early September.

'I experienced postpartum Psychosis after the birth of my second child Lucy.  She was 6 weeks old when I was admitted to the Beadnall Mother and Baby Unit in Morpeth. It was there that I received excellent support from the APP peer support worker Sharon Bell. Sharon was there to support me and my family, speaking often on the phone with my mum to help ease her mind that I was going to recover. She was always there for me when I needed someone to talk to and she was very reassuring and supportive. It was also reassuring looking at the information on the website and reading stories from other mums who had suffered and recovered from postpartum psychosis.

To raise money for APP my sister and I completed Total Warrior in June which was hard but really fun! We will also run the Great North Run in September. We wanted to raise money for APP to ensure they can continue to provide the support to other mums suffering with postpartum psychosis and we have raised over £1400 between us so far.'

Thank you so much to both Laura and Helen for taking on these challenges and thank you to everyone who has donated to support them so far.

You can read more about their stories and support Laura and her sister Helen here:

www.justgiving.com/fundraising/laura-kirkpatrick3

www.justgiving.com/fundraising/helen-long15

Jenny Stevenson and a team of family members spent a month clocking up some ‘Miles for Mums and Babies’ 10 years after Jenny experienced postpartum psychosis (PP).

Jenny experienced PP after the birth of her first son, Toby, in 2012. Admission to the Brockington Mother and Baby Unit (MBU) in Stafford, prompt specialist treatment, and good support from family and friends all aided a relatively quick recovery. Peer support, via APP’s online forum and reading personal experiences and stories on APP’s website, subsequently played a huge role in helping Jenny to come to terms with what had happened. Jenny attended an APP volunteer event the following year and trained as a peer support volunteer at the beginning of 2015. She is now working as one of APP’s National Peer Support Coordinators.

Jenny wanted to mark the 10 year milestone by raising some money and awareness for APP. She decided to take on a ‘Miles for Mums and Babies’ fundraising challenge between the dates she was an inpatient on the MBU (exactly one month) in 2012. The initial target was to jog and walk 37 miles during the month, the distance from her home to the MBU. With help from family members, the hope was to double this distance and cover the return journey.

Over the course of the month, Jenny’s team (Jenny, Toby, Jenny’s mum, sister and brother-in-law) jogged, walked and swum 375 miles between them. Each mile completed as part of this challenge reflects the journeys mums, babies, partners and families travel to be together, whilst mums receive care in Mother and Baby Units. 375 miles reflects five return journeys from Jenny’s home to the MBU in Stafford, a journey travelled by her husband every day during her stay.

The team raised £1275 for APP and by asking people to donate via the Big Give, which match-funded donations during the month of July, APP received double this amount – a total of over £2500.

Jenny says, “I’m delighted to have raised so much money for APP and that the money raised via the Big Give will be used to help grow the peer support service. Peer support is vital to so many women and families affected by postpartum psychosis – I see first-hand the positive difference it makes.”

Jenny is pictured here with her mum Sharon, son Toby, sister Juliet and brother in law Stephen.