APP News May 2020: Our priorities | Mental Health Awareness Week | Peer Support & Cafe groups | Partners Group | PP Community | Regional round-up | Mental Health advance statement | Fundraisers | Books | Research & more ...
APP’s Director, Dr Jess Heron, outlines APP’s priorities during the coronavirus pandemic:
“At APP our priority is to be here for the women and their families who need us. We’ve put our normal business plan on hold, and we are concentrating on providing peer support for all who need it, signposting pregnant and postnatal women to the right services, and disseminating information.
The pandemic is causing worry and hardship for many. Isolation and lack of support is a challenge to mental health. For those we support, it is an especially hard time: women who are currently pregnant and at risk of PP because of a previous PP episode or bipolar diagnosis; families who develop PP during the Covid-19 crisis when normal health professional services, information and routes to care are disrupted; and those who are trying to recover from PP and care for a new baby during this period of social distancing, without health professional home visits, and support from grandparents, family and friends.
At this time, partners have an even more vital role to play. APP has launched two new initiatives aimed at supporting partners – our PP Signs and Symptoms campaign and our Partners Facebook Group. There’s more about both of these later in this newsletter.
As families who navigate PP know all too well, difficult circumstances often bring about innovation, creativity, and new strength. We are running a variety of social media campaigns to support connection through the crisis: our peers and clinical experts are holding Q&As and Facebook Lives to disseminate information; we are running volunteer led sessions on crafting, baking, mindfulness and more; we are asking people to film ‘honest conversations’ with their friends about PP and write messages of hope for those recovering; we have launched an APP Book Group and a Running, Cycling & Walking Group. You can read about these initiatives and how to get involved below.
Finally, I’d like to thank all of APP’s supporters. Charities are facing real financial challenges with a fall in fundraising income putting services in jeopardy. I know that for many people, money is tight as a result of job reductions or losses. Yet so many of you are continuing to support our work, contributing to Facebook fundraisers or setting up your own fundraising activities. The work of charities which support pregnant and postnatal women is vital right now and our warm thanks go out to everyone for your continued support.”
Mental Health Awareness Week
Mental Health Awareness Week runs from 18th - 24th May and the theme this year is kindness. Join in the week and help us drive conversations about postpartum psychosis, mental health and kindness to realise lasting change. You can help with this by making a message of hope for us to share. Send a picture, poem, letter, or short video filmed on your mobile phone to email@example.com or tag @ActionOnPP on your social media. You could also share our posts on our social media channels on Facebook, Twitter and Instagram, host a virtual fundraising event here and to be kind to yourself by taking some time out each day just for you.
Peer Support and Cafe groups
Earlier this year we announced the launch of our one to one peer support over video call. It’s open to anyone who has experienced PP, whether you experienced PP many years ago and just want to talk to another person who has had PP, or is something you are newly recovering from. If you've been affected by postpartum psychosis and are interested, please get in touch: firstname.lastname@example.org
You can still also visit our forum or request 1:1 email support here.
Our social meet-ups have moved online for the time being and continue to be open to women who live in the areas where we would normally meet: London, Sussex, South Wales, Yorkshire/ north-east, Lancashire & Cumbria and Birmingham. You can find the latest dates via our Facebook Events page here. We are seeking funding to make these available in more regions.
Signs and Symptoms
In April, APP launched our Signs and Symptoms campaign beginning with an appeal for partners, family and friends to fill in our survey. Thank you to everyone who took the time to fill in the questionnaire. We had a fantastic response.
One of the key findings from the survey was that in 75% of PP cases the first person to identify that help was needed was a partner, family member or friend. This shows just how important it is for partners of pregnant women to have access to information about the signs and symptoms of PP. Many people are still not aware of the illness and around half of PP cases occur out of the blue to women with no history of mental illness. During the pandemic postnatal women are not receiving the same level of face-to-face support from health professionals so it is their partners and anyone else living in the family home who will need to be vigilant and seek urgent medical help on a mum’s behalf. The survey is still open so if you haven’t filled it in yet, please do so and share the link with family and friends.
We worked with Mother London to create a powerful new graphic (shown above) which we launched in Maternal Mental Health Awareness Week. The graphic outlines some of the symptoms of PP and urging family and friends of new mums to seek help if it’s needed. The graphic has been re-tweeted thousands of times, and by key national influencers. The message is such an important one we want to make sure as many people as possible see it. Please share with family and friends if you haven’t done so already.
For partners of women who have had PP the experience can be bewildering, frightening and often lonely. APP has a number of dads who support others 1:1 by email and on the forum. More partners are starting to tell their stories and we try to share these on our website, on social media and support them with press coverage.
APP is also starting a Facebook group for partners of women who have had postpartum psychosis to connect with each other, offer support, experience and a place to chat. If you would like to join the group you can find it here or email us: email@example.com.
Our work was also highlighted in an article in The Times featuring Hugo White, husband of author Laura Dockrill, who has written about her experience of PP. You can read the interview here (subscription required).
Staying in touch with people and building online communities is especially important at this time so we are using social media to connect with women and families affected by PP in as many ways as possible. We have a number of sessions planned over the coming weeks. Connect with APP on social media to follow these.
If you have an idea for a session you would like to run, please get in touch: firstname.lastname@example.org. Jocelyn, our Peer Support Coordinator in Lancashire, made our first peer support and craft ideas Facebook video. You can watch it here.
We are sharing ideas for activities parents can do with their children during lock down on our Facebook page.
You can also join one of APP's volunteer teams. Volunteers are in regular contact with an APP National Coordinator. Join a volunteer Facebook page to connect with others, take part in regular video call meetings to share ideas, discuss plans and talk about how you can help.
Peer Support Volunteers. Unfortunately, we are unable to train new peer support volunteers during the crisis. However, you can register your interest in becoming a peer support volunteer in the future and our Coordinators will explain the ways in which you can offer peer support before your training. Media Volunteers. We have a team of volunteers who help to raise awareness of postpartum psychosis by telling their stories in the regional and national press, on social media, websites, television and radio. You can find out more information about what is involved here. Regional Reps. Our reps give lived experience talks at events and training sessions, helping us to connect with health professionals as well as disseminating information and supporting patient involvement in developing NHS services. If you would like to know more please do get in contact with us. Fundraising volunteers. If you enjoy planning events or coming up with fundraising ideas, you could become an APP Fundraising Volunteer. Email email@example.com for details.
Earlier this year we launched our APP Running, Walking & Cycling Club on Facebook. Here, members can share details of the activities they are planning and are involved in as well as find inspiration and support for keeping fit and active!
You could also join our new Action on Postpartum Psychosis Book Club, a relaxed and friendly space open to all to chat about books on any topic. The club is also used to share updates about books members might be interested in on motherhood, mental health and postpartum psychosis. You can join the Book Club here.
Maternal Mental Health Awareness Week
Maternal Mental Health Awareness Week, led by the Perinatal Mental Health Partnership, ran from 4th to 10th May, and was supported this year by the Duke & Duchess of Cambridge. APP shared content for each day of the Campaign. Thank you to Eve Canavan, APP Media Volunteer, and the PMHP team for setting up and running the Awareness Week. The reach and engagement over the week was astounding.
Highlights of our activities included an interview with Korean-American author of Inferno, Catherine Cho.
APP also created some new online resources during MMHA Week:
1. What is postpartum psychosis? Early signs and symptoms of PP; In conversation with Sally, Jamie, and Professor Ian Jones.
APP’s pioneering collaboration for delivering peer support in Birmingham East, working alongside Acacia & Approachable, has expanded to include the Birmingham South & Solihull community team. APP’s Peer Support Facilitator Natalie says, “I am delighted to be able to offer peer support to more women and families and excited to be working alongside another great Perinatal team.” The project is a partnership with the Birmingham & Solihull Mental Health NHS Foundation Trust.
With the Covid-19 lock down affecting face to face peer support, Natalie is working from home to continue with peer support via text, phone and video calling, whilst remaining in close contact with her other peers and NHS colleagues. Our regional APP café group in the area has also moved to a virtual meet-up; if you’d like to find out more about our work in Birmingham, please get in touch: firstname.lastname@example.org.
Lancashire and Cumbria project
Jocelyn, APP’s Peer Support Facilitator based in the Ribblemere MBU in Chorley and in the wider community, continues to provide peer support to women and families affected by PP in the Lancashire & South Cumbria region. Jocelyn is mainly delivering support via email, phone and video calling during the crisis, and is in the MBU one day per week, with social distancing measures in place. If you’d like to find out more and get involved with this project, or live in the area and have been affected by PP, please get in touch: email@example.com. The project is delivered in partnership with Lancashire & South Cumbria NHS Trust.
If you would like APP input to your work with women and families around perinatal mental health, you can contact us here: firstname.lastname@example.org.
Health professional training
Between January and March 2020, APP delivered lived experience talks to more than 800 health professionals at events across the UK. We are grateful to the mums and families who have shared their experiences and contributed to events and training sessions so far this year.
“I have been privileged to hear three different women from APP share their experiences and it is always what attendees remember the most from events.”
We delivered our one day co-produced workforce training sessions to health professionals in Wales. Feedback from the sessions has been excellent:
“A very informative, engaging day.”
All our health professional training sessions have now been postponed because of the pandemic. We have trialled some training to student midwives and trainee psychiatrists via video call. If you are planning to deliver online perinatal mental health training over this period, please contact us by email to see if we can help.
APP has been sharing information to ensure that the needs of women and families affected by postpartum psychosis do not get forgotten during this crisis. We:
Joined a campaign made up of more than 40 charities calling on the government to prioritise the well-being of babies, toddlers and their families during the coronavirus crisis & to stop the re-deployment of staff working with pregnant and postnatal women.
Submitted evidence to the Parliamentary committee on the impact of coronavirus on pregnant and new mothers
Joined a Welsh Government Zoom meeting, led by NSPCC Cymru, to discuss the impact of coronavirus on pregnant women.
How you can help:
You can join NSPCCs fight for a Fair Start Campaign to ensure that perinatal mental health remains a priority here. To find out more about NSPCCs fight for new mums and families during COVID-19, please click here.
Support the petition by APP's Northern Ireland Regional Rep, Oorlagh Quinn, calling for MBUs in Northern Ireland. View the petition here and get in touch if you would like to support campaigning in Northern Ireland.
Writing a mental health advance statement
Dr Tania L Gergel, Wellcome Trust Senior Research Fellow in Mental Health and Justice, explains more about “Mental Health Advance Directives” and why it might be important to make one.
“These are such uncertain times with so many challenges to face. For those with mental health conditions, especially when pregnant or planning a pregnancy, an added uncertainty can be about accessing familiar healthcare resources and receiving suitable care and treatment if we become unwell. It’s very likely that this will be more difficult than usual and that it may not be possible to be treated by professionals you already know and who know you and your medical history.
One useful way to manage some of this uncertainty would be to write a document in which you provide key information for professionals who might treat you if you become unwell. Here you can provide information about things like your condition, treatments which work/don’t work and contact details both for family/friends and for health professionals who are familiar with your history. This ‘Mental Health Advance Statement’ would be useful at any time, not just during coronavirus. It’s not a formal or binding document but can provide important details and guidance, especially for professionals who are unfamiliar with you. Although it is not specifically written for the management of the perinatal period, we have included some sections for providing details about management of health during and after pregnancy.
I was very unwell with episodes of psychotic illness both in the last trimester of my second pregnancy and shortly after my daughter was born. Fortunately, I had fantastic medical support and advice both before and during the pregnancy, and was able to put together an advance statement which proved invaluable when I became unwell. I updated my own ‘Advance Statement’ a few weeks ago – as someone both living with bipolar and as a researcher in the field, it seemed a good idea to try to have plans in place under the current circumstances. But it was also challenging – thinking about times when I’ve been unwell and trying to think through possible contingency plans if usual treatment or teams are unavailable. Even so, I found that writing the document was a good way to reflect on my health and maybe even bring some increased sense of understanding or control at this time. Hopefully, writing this document, either yourself or with your family or friends, can also be helpful for you.
The documents can be accessed and downloaded online here or via Twitter. Please do share and retweet these documents if you know others it might be useful for.”
For updates on Tania’s work on Advance Decision-Making and Mental Health, follow her on Twitter: Tania Gergel@TG_PhilPsychMed
Thank you to our fundraisers!
APP has an amazing group of supporters who work so hard to raise funds for us. We are especially grateful for your ongoing support during the pandemic. Please get in touch if you have ideas about how you can help.
Our Facebook fundraising has been a huge success so far this year. We would like to say a huge thank you to everyone who hosted their own Facebook Fundraiser and to all who donated.
APP is the chosen charity for the month of May on Virtual Runner. Thank you to everyone who has signed up for this and for APP’s own Active May Challenge. We will have details of some of the people taking part and the activities they have chosen in future newsletters. You can also find out more here.
Thank you to:
Everyone who took part in the 2.6 Challenge last month and donated to APP.
Gina & Rayan who set off on their 2.6 mile journey to their Grandparents’ home and surprised Rayan’s Grandad with a lovely box of chocolates! Gina & Ryan raised £395 for APP. Read more.
Eleanor Dattani and Naplew Productions, for releasing Eleanor’s new album ‘Darkness Into Light’ and donating 40% of all proceeds to APP and Acacia. Read more.
Nicola Ball, who encouraged family and friends to help her take on a 1000k Challenge during Maternal Mental Health Week and raised a fantastic £1880. Nicola’s sister Stephanie also set up a Facebook Fundraiser which raised £235. Read more.
Jo Bushell, who is raising funds for APP by offering doorstep photoshoots to families along her daily exercise route. Jo says: "During lockdown a neighbour contacted me. She had seen other photographers on Facebook taking doorstep photographs and thought I could do the same in our neighbourhood. I was so excited to be able to use my photography to capture these strange times for families and I have always wanted to raise money for APP. The charity helped me and my family so much when I suffered with PP following the birth of my first child in 2013. So the idea was born to take photos and ask for a donation to APP. So far I have photographed six families, with more lined up on my exercise route in the next few days." Donate here.
Laura's book was also reviewed along with Catherine Cho's "Inferno" by The Guardian.
A big thank you to APP volunteer Amy for sharing your journey with postpartum psychosis in a video shown on BBC One's Comic Relief The Big Night In on 23rd April.
Irene’s Ghost, the award winning film directed by Iain Cunningham, is now available to rent or buy. Read more about Iain’s work with APP here and find out more about the film here.
If you would like to review books on postpartum psychosis for us please get in touch!
Nobody Tells You...by Becca Maberly
Nobody Tells You…101 Truths about Pregnancy, Birth and Parenthood is described as "the book that all prospective and new parents need. It is the book you wish you had read: when you first saw those two blue lines on your pregnancy test; when you are glued to the sofa feeding your baby. It’s the book that her partner, to his surprise, enjoys reading and recommends to his friends."
The book includes stories from mums and dads about their experiences with postnatal depression, anxiety and postpartum psychosis and is accompanied by expert advice on how to get help. You can get a 20% discount on the book at fromonemothertoanother here: A Mother Place
Inferno: A Memoir by Catherine Cho
“I was so preoccupied with the idea of losing my body, it had never occurred to me that I might lose my mind.” I think a lot of mothers who have had mental health struggles can relate to this line which we read early on in Catherine Cho’s recently published memoir, in which she shares not only the Inferno that postpartum psychosis (PP) is to those of us who have been through its baptism of fire, but also the backstory of pregnancy, falling in love with her husband, James, following an abusive relationship and a mixed childhood with her beloved brother Teddy.
The chapters of her book flit between past and present, just as a psychotic mind flits between reality and delusion, giving the reader a taste of the confusion she experienced in her illness. However, it is Cho’s detail and lucidity in writing which is in fact remarkable. She recalls events with incredible clarity, less like the muddled collage one might expect, but more like a meticulously pieced together jigsaw.
I would thoroughly recommend this honest, brave testimony to those whose lives have already been touched by PP, as well as those for whom it is their first real encounter with the disorder - and a real one it certainly is, so thank you Catherine for entrusting your story to us your readers!
Review by Ele Cushing
The unknowns surrounding this illness are difficult for families and their health professionals. APP supports all types of research into PP. You can find out more about some of the studies here. If you are a researcher and would like us to support your research, please get in touch at an early stage in planning.
Pregnancy and Birth Planning tools for those at risk of PP
We are working with Elen Thomas, a PhD student at Cardiff University, to develop and test a new tool to support decision making for women with Bipolar Disorder or previous Postpartum Psychosis during pregnancy and the postpartum period. We are at the testing stage of this new tool, working with a group of volunteers from APP who have been through the experience of planning a further pregnancy and PP, or are currently pregnant.
PP in women from Black, Asian and Minority Ethnic groups
Lauren’s study on the experience of PP in women from BAME backgrounds has completed and is now in write up. We will share more information in the next newsletter. APP is also partnering on an NIHR study of perinatal mental health service use and pathways to care in women from BAME backgrounds compared to White British backgrounds. Research interviews will begin for this study soon. If you identify as being from a Black, Asian or Minority Ethnic group and would like to help with this study please get in touch: email@example.com.
Recovery & Relapse after Postpartum Psychosis
Gillian Smith, APP member and Lived Experience Researcher is doing an MA in Psychology at Chester University. She is examining factors that contribute to periods of relapse during recovery from postpartum psychosis. Gillian is looking for women who relapsed during their recovery from PP, which involved re-admission to hospital, or a recovery setback, that was treated in the community. Gillian would like to understand more about reasons for recovery setbacks and discuss the support and interventions that were most effective in recovery. If you experienced relapse during your recovery period and would like to take part in the research, please get in touch. Taking part involves an interview over the telephone or via video call: contact Gillian Smith by email.
Action on Postpartum Psychosis is a Charity Registered in England and Wales (no. 1139925) and a Company Limited by Guarantee (no. 7466643). Registered address: Action on Postpartum Psychosis, c/o Baldwins, 10-11 St James Court, Friar Gate, Derby, DE1 1BT.
APP is a founder member of the Maternal Mental Health Alliance. You can find out more here.