All posts by Lindsey

Could You Be Our Next Treasurer?

people-woman-coffee-meetingWe are looking for a Treasurer to join our board of Trustees and assist our award-wining small charity with robust financial management, planning and reporting.

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: lindsey@www.app-network.org 

Download the role description here

Time To Talk About PP & Stigma

tttd17On Time to Talk Day we want to talk about PP & stigma - what are your experiences of talking to others about PP? Have you experienced stigma? What have people's reactions been like? Good, bad, supportive or strange - we'd like to hear.
 
Join APP’s peer supporters and lived experience volunteers live on Twitter on 2 February between 8-9pm and look out for hashtags #timetotalk #PPtalk #endPPmyths.
 
Can't join us? Email your stories to app@www.app-network.org or tweet @ActiononPP in advance. 
 
Find out more about Time To Talk Day here. 

Meet Our Amazing London Marathon Runner

KTDyerFor the first time, APP has been awarded a charity place in the London Marathon and we are thrilled to introduce you to our runner, Katie Dyer.

Please support and sponsor her here

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. 

Postpartum Psychosis & Menopause on BBC Radio 4 Woman's Hour

p0440gttProfessor 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. 

 

Triathletes Take On Xmas Mincepie Cycle

img_0547On Sunday 18th December Meynell Valley Hunters Triathlon Club (MVH) organised a Xmas Mincepie Cycle for charity and APP was the lucky recipient of a share of the proceeds, £160.00 in total. 

Warm thanks go to Robin Barber (pictured in his arresting Xmas jumper!) and a wonderful group of Tri Club members who made cakes and mince pies and helped to serve out teas during an extremely successful morning. Robin managed to whip up some amazing support from neighbouring Tri clubs and Heather Heron organised an APP information desk.

Warm thanks from us all at APP go to a truly charitable club who have already supported APP in a number of events this past year - including their Annual Xmas Dinner Raffle which raised another £150! - and especially to Robin who has initiated such a willing charity drive for APP within the club. 

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Hannah attends #HopeDec09 for APP

czry6snxeaaicarIt 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." 

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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

Making a Difference to Local Services

elliehannahsbuCongratulations to APP Peer Support Coordinator, Ellie Ware, who has been appointed to the Executive Group of the Sussex Perinatal Mental Health Clinical Network.

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:

"It's really exciting and a real privilege to be asked to be part of the Executive Group that will be developing the Sussex perinatal mental health service, which is my local service.
 
I hope to bring not only my own personal experience of PP -- what was good about my care and what could have been better -- but all the stories and voices of the women and families APP support."  
 
Sussex Partnership currently offers a Specialist Community Perinatal Service in Brighton & Hove and in East Sussex. The new funding will allow the team to expand and to provide specialist support to women, their families and their babies across the whole county – for the first time in West Sussex – and at East Surrey Hospital. 
 
Photo shows Peer Support Coordinators Ellie Ware (left) and Hannah Bissett (right) representing APP at London South Bank University Perinatal Mental Health for Healthcare Professionals conference in September 2017. 

APP at Downing Street Reception for Small Charities

img_4110Fantastic 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"

David's Story: Secrets and Lies

David is a retired university teacher. David’s mother, Flora, suffered from Postpartum Psychosis in 1933, and died in 1943, before the advent of the NHS, and antipsychotic and mood stabiliser medication in the 1950s.

David wrote down his moving story for his children, by way of a historical record, self-explanation, and a caution of the risks of failing to communicate about mental health. He has agreed for us to share it with you. 

Stigma, fear, misinformation, lack of awareness regarding PP still exists in many parts of our world - in families, playgrounds, mums and baby groups, our working lives. Thanks to APP’s Big Lottery project, things are changing, and this change is now beginning to take on a pace of its own. 

Secrets and Lies tells of the individual pain caused by failure to communicate with loved ones and, in particular, children, about Postpartum Psychosis - and the intergenerational impact of stigma, shame and family secrets. 

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flora-mervinMy mother Flora Agnes Mervin (nee Bell) was born in 1905 and died in 1943. She was, to put it mildly, a tragic figure.

She met my father Henry William Mervin (always known as Harry) at the Civil Service Sports Club at Hilsea in Portsmouth some time during the late 1920s. He was employed by the Post Office which he had joined as a telegraph boy. After service in the army during the First World War he had spent three and a half years in Egypt, working as a wireless operator at the GPO wireless station at Abu Zabal, twenty miles from Cairo. On his return to the UK Harry was posted to the Central Telegraph Office in London where he worked for three years before his marriage to Flora in 1930 at St Marks church in North End, Portsmouth. He was then 31 and she was 26.

On 31st July 1933 I was born in a nursing home in Ealing where the recently married couple had settled. Flora was unable to breast feed me and became, as a consequence, intensely distressed. Harry arrived home one evening to find his wife being looked after by a neighbour who, he said, had found her to be “ in a desperate state of depression.” He then set about removing Flora and her baby back to Portsmouth.

There she was diagnosed as suffering from puerperal insanity, now known as postpartum psychosis; this is a rare condition, occurring in 1-2 of 1000 births, or 0.1%. Flora was admitted to Portsmouth City Mental Hospital, (formerly known as Portsmouth Lunatic Asylum, and later as St. James’ Hospital) on 27th November 1933 with Harry telling the hospital that his wife had been “normal till two months after parturition. She then complained of feeling confused and not able to concentrate on anything. She had difficulty in feeding the baby then she became depressed with suicidal tendencies-remorseful seemed to think she had let her husband down.” Meanwhile her brother, my Uncle, George Balfour Bell, stated “that she had an idea that she had neglected her baby, that the baby was dead, and that she herself should throw herself in the sea.”

The above is heart rending enough, but it is nothing compared to the dreadful, agonising detail of her situation 5 1/2 years later when Dr Thomas Beaton reported that Flora’s “condition on admission was one of acute confusional psychosis. She was grossly confused, restless, hallucinated and needed every nursing care and attention. During the course of her illness the acute excitement and confusion have diminished. She remains now indolent, apathetic and disinterested. She is still vividly hallucinated and continually complains of voices which talk to her from the walls and ceiling. She is still sufficiently intelligent to realise her position, but she is liable, from time to time, to periods of violence, during which she becomes destructive. She is quite incapable of occupying herself, needs considerable attention in regards to her physical habits and cleanliness, and is essentially a patient requiring hospital care and control.”

The same doctor noted further that Flora “has been given intensive treatment, including the modern convulsion therapy, but in spite of this her condition, following the acute confusional state, has shown a progressive deterioration, and she might be described now as suffering from chronic hallucinatory psychosis with a slowly progressing secondary dementia”.

While Flora was going through these ghastly agonies I was a small child totally unaware of my mother’s existence, growing up as an evacuee in Chichester. Seemingly the lady who cared for me there had been instructed by my father to tell me that my mother had died when I was born. It came as a great shock therefore to be informed in 1943 by a fellow evacuee, with the brutal frankness that children are sometimes capable of, “Your mother just died……its in the paper.” I now know that he was referring to the bleak announcement in the Deaths column of the Portsmouth Evening News of 1st October 1943 which read “MERVIN, Flora Agnes (nee Bell) at St James’s Hospital, 27th September. Loving memories Harry, Mother, Balf.”

It is still difficult for me to believe why I did not ask for some sort of explanation for this puzzling new information from the lady looking after me, or from my father on one of his occasional visits. The fact of the matter is I suppose that at the time I was a decidedly timid 10 year old boy and from the beginning I appear to have been drawn into the disgraceful conspiracy of silence surrounding the tragedy of my mother’s life and death.

Much later, when I was nearly 40, I became aware of the circumstances surrounding my mother’s death and my father’s marriage to my stepmother. In a letter written in 1972, he reported that after Flora’s incarceration in November 1933, when he was still working in London “I came down to Portsmouth nearly every week end to visit your mother and you. For the first few weeks it seemed as though your mother might recover, but as the months went by, and she eventually failed even to recognise me, any hopes I had began to fade.” Shortly after Dad returned to Portsmouth and continued for three years to visit Flora with her condition showing no sign of improvement and it becoming increasingly evident that she would never recover.

This was surely an incredibly stressful period in my father’s life. His financial situation was desperate, there was no NHS to provide for Flora’s care and the 25 shillings per week this cost took a large chunk of his meagre salary of £5 per week. His plight was such that whilst in London he was dependent for survival on a weekly whip round by his Post Office colleagues. His finances eased when he was back in Portsmouth living with his mother, although understandably, he suffered from bouts of depression and came to dread having to visit a wife who no longer recognised him. He appears to have given up on the visits in 1936 and it was then that his relationship with Norah began and his life took a turn for the better.

The 12 page letter Dad sent me nearly four decades after these events, arose from a conversation I had with a half sister when she came with her husband to visit us in Knightcote in 1971. On that occasion, probably after a few drinks, I spoke to my her of my frustration at knowing nothing of my mother, of having no idea about what sort of person she was and my unhappiness at my father’s unwillingness to talk to me about these matters.

In that letter he begins by saying “I have always been conscious of my failure to enlighten you on the tragic events following your birth, and I have appreciated your feelings on the subject. You did on one occasion ask me one or two questions about your mother’s illness, which I answered, but nothing followed that, and I have always found it difficult to open the subject verbally - hence this letter.” I remember the occasion he refers to well, indeed my memory of that event is rather better than his. I  was home for the weekend, some time in my twenties, and we went for a drink at the nearby pub. In the relaxed atmosphere of that place, I finally plucked up the courage to ask, “My mother, was she anything like me?” This was answered with a resounding “No” with Dad making it clear that no further discussion would be welcome. This bleak, fleeting exchange was the one and only occasion, throughout my life, when my father spoke to me about my mother.

Partly, of course, the fault is mine. I should have had more guts; I was just not brave enough to insist on him giving me some answers to the questions that had troubled me for so long and which trouble me even yet. What sort of woman had that beautiful young girl in her confirmation dress grown up to be? What attracted him to her? What were her interests? What were her strengths and her talents? What made her laugh and what made her cry?

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It is difficult not to conclude that my mother was badly let down by her closest relations. Not only by her husband but also by her brother and her mother. Each of the latter two went to their grave without so much as speaking her name to her only child. What they effectively did was to reduce her to the status of a non person, to deny her very existence. Why did they not realise that this was a unforgivable thing to do? In that notice in the paper on her death it said “Loving memories Harry, Mother, Balf” What an awful, bitter irony given the complete failure to honour her memory by speaking about her in any way to her son. All human beings, rather pathetically, are anxious to be remembered. “We will remember them” is the refrain at remembrance ceremonies. In fact few of us will be remembered for very long, and yet for immediate family members to act as if a deceased person has not even existed, to blot out all memory of them, is to do them a terrible disservice.

In trying to understand why my father was unable to look me in the eye and to ever talk to me about my mother, I assume that it was partly due to an understandable wish to shut out of his mind dreadfully painful memories. It may also be the case that it was because he felt guilty. Not about remarrying, given the circumstances he was surely entitled to do that, but because of the unfortunate sequence of events that took place in 1943.

Five years previously the law had been changed to provide grounds for divorce other than adultery. Wilful desertion for three years or more; cruelty; and incurable insanity were now added and Dad and Norah decided to take advantage of this change. They wished to get married and now he could divorce Flora to make that possible. There duly appeared in the Portsmouth Evening News of 9th July 1943 under the headline INSANITY GROUNDS FOR DIVORCE, “A decree nisi was also granted to Henry William Mervin of St. George’s Road, Southsea against Mrs Flora Agnes Mervin on the ground of her incurable insanity. They were married at St Mark’s Church, Portsmouth in 1930 and there is one child. Since 1933 Mrs Mervin has been a patient at the City Mental Hospital.” A little less than three months after the divorce the desperately ill Flora died and a month after that the marriage took place. As my father said in his letter “it was a tragic coincidence that your Mother died during the same year”

The fact that Flora died so soon after the divorce may have instilled in my father some pangs of guilt and possibly, in retrospect, he may have also felt badly about his decision to not have me present at his wedding-an event of which I was totally unaware at the time. I have often wondered why I was excluded from that occasion. It is not as if I was a baby. I was 10 years old and my indignation at being left out increased considerably when I discovered many years later, that a cousin of almost the same age did attend. Presumably, the concern was that if I had been there it might have led to me asking some difficult questions. To put it another way, my exclusion was a major contribution to the conspiracy of silence regarding my mother amongst her relations.

Apart from any guilt no doubt the other factor that prevented my father and others from talking about Flora and her illness with me was the shame and the stigma attached in that era to having insanity in the family. To use an even uglier word she was consigned to a hospital that had just a few years previously been known as the Portsmouth Lunatic Asylum. The fact that this poor woman was insane, or was in the terminology of the time a lunatic, was apparently thought to be sufficient reason for her name to be kept out of family conversations, for her relations to blot out all memory of her and to conduct themselves as if she had never lived.

What has writing this very sad story accomplished? In a small way it has allowed me to give vent to my long felt unhappiness at the treatment of my mother. It has had, for me, a helpful cathartic effect, allowing me to come to terms with an issue which has troubled me for many years It has also brought home to me the merits of speaking frankly, of facing unpalatable truths, of getting things out in the open. Obviously there are limits to speaking frankly. Civilised behaviour requires that we do not give voice to every thought that passes through our heads irrespective of the hurt, or the offence it may cause others, but that doesn’t justify what happened in this case where secrets and lies had tragic consequences.

There is also an element of weakness in writing letters about important matters, rather than speaking about them face to face. And now here am I doing the same, putting my innermost thoughts down on paper, having failed to give voice to them when it could have counted. To add to that, I am ashamed to say, that when I had that conversation with my half sister that led to Dad’s letter I cravenly asked her not to tell him what I had said, for fear of upsetting him- an injunction she evidently ignored. Similarly, on an earlier occasion, I said much the same to an aunt in talking about these matters, in the wake of a drink or two, at a wedding. She subsequently sent me a short letter with a few words that I have treasured ever since “Your Mother was pretty, gay and very intelligent.” At last some one had told me just a little of the woman who brought me into the world and whose awful, indescribably unbearable illness had come about as the result of my birth.

My father was a decent, kindly man who had a hard life, and he endured horrors and privations of a sort that have never befallen me. He did however find it difficult to face up to his responsibility to the poor damaged Flora. He is not alone in that of course, both her mother and her brother should have done more to honour and preserve her memory. And then there is my own culpability. On more than a few occasions, I shrank from confronting my father: I lacked the guts in other words, to demand the answers that I so sorely needed. Finally, this unhappy story does nothing to restore in me any sort of religious belief. Why would a supposedly merciful God allow an innocent young woman to suffer ten long years of torment followed by the obliteration of all memory of her having lived?

Secrets and Lies, Action on Postpartum Psychosis
David and his son John, Flora's grandson
Secrets and Lies, Action on Postpartum Psychosis
John's children Lizzie and Charlotte, Flora's great granddaughters

 

Secrets and Lies, Action on Postpartum Psychosis
David's daughter Alice and her children Rachel and Jack, Flora's great grandchildren

 

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A Marathon A Month For APP

img_2848Holly Hawood is running the Thames Meander Marathon on Saturday 5th November.

Her sister, Beth, experienced PP after the birth of her son, Leo and this is just the first in a series of 12 marathons she intends to run over the next year to raise money for APP. 

You can read more about her story and donate to encourage this incredible effort over at her JustGiving page. In the meantime, Holly emailed us with a pre-race update: 

"I have attached a photo of my first training run with my fabulous running partner Alaska. She is my cheerleader on my long distance training runs, and even at crawling pace when I'm on mile 17 of 18 she will give me that little helpful pull up the final hill!

Alaska is 3 and I've been running with her since she was a year old. She's helped me train for 10K and half marathon races in the past, and knowing that she needs to stretch her legs encourages me to put my kit on and go!

On Saturday I embark on Marathon 1 of 12. 5th of November, a poignant date for me as it is my nephew Leo's 3rd birthday. My sister has now fully recovered from her PPP after Leo's birth and they are celebrating his birthday in Disneyland Paris.

I will be thinking of her every step of my marathon journey and be thankful that she had the amazing support she did. Without that support I know things would have been different."

Please support Holly's amazing endeavour. Donate to sponsor her at JustGiving now.