25 April 2019

APP interviews Iain Cunningham, Director of 'Irene's Ghost'

Dr Jess Heron interviews Iain Cunningham about his experience of making the film 'Irene's Ghost'

Why did you decide to make the film, Irene’s Ghost?

It was only really when I had my daughter Isla that I started to properly question what went on and to try and reconcile things. I watched her grow and develop and it was amazing to me how fully rounded a very small child can be. I started to think about myself at that age, and what I had experienced. I started to see the world through the eyes of a 2 or 3 year old. I imagined disappearing out of Isla’s life without a trace and it was completely heart breaking. I also started to wonder what the connection might be between Irene and my own experiences, my own mental ill health a couple of years before. I started to feel it was my responsibility to Irene to find her in the way that I could. So that’s what I set out to do.

The most moving scenes in the film involve your father. Given the era’s stigma and lack of information- which were so beautifully conveyed in the film, what impact has the film has had on him?

I always respected the fact that my Dad didn’t want to talk about things, but when I started to find out things about Irene, I felt like I’d been propelled out of a cannon, that’s how compelled I was to do it. I was incredibly nervous about talking to him for the first time, I had to build myself up to do it. It felt like he’d held a lot of emotion inside him for a long time. As the search progressed, we started to understand each other more and more. I think somehow we met in the middle. I started to understand what he had been through, the pain and confusion, and the despair really. I think since making the film, and with a bit of time to digest the experience, our relationship has improved a lot. We can talk more openly than before, and I think we take the time to look after each other a bit more as well. He’s very keen now to try and help men in a similar situation to the place he found himself in, and might even train as a peer supporter for APP.

The film flits between real people and dreamlike animations. Why did you use this device?

I had always thought animation could be a way to help visualise the imaginative world I had as a child, and my slightly unreal or magical memories of my Mother. I had an illustrated baby book, and the palette came from that, those muted 70s tones. Mixing reality and animation hints at the way we construct stories from memories - our memories are not entirely truthful, and that felt like a nice visual metaphor. There’s also a naivety to the style which again echoes the world of a child

You demonstrate in the film that there is pleasure to be gained from open discussions with children about life’s difficult issues. Was it difficult to face the family ‘skeletons’ head on, in order to be able to do this?

When I started out, I realised that it would be important to my daughter to know her Grandmother as much as it was for me to know my Mother. Partly because of my own experiences as a child, I wanted to be as honest as I could with Isla about what I was doing and why. It’s been an incredibly valuable experience to go through together and has enabled us to talk about grief, mental health and well being, relationships and lots of other very important stuff that would have perhaps been more difficult without this real life adventure unfolding around us. People were very generous with me because they could sense how important it was to me, and I’m grateful for that.

What was your experience of meeting women and families through “Action on Postpartum Psychosis”? Did it help you or your family personally?

I vividly remember the first time I met with women from APP and started to realise that this illness could explain the things I had been hearing about from people. Developing relationships with some of those women has been one of the most rewarding and incredible parts of this process. I was able to understand the illness first hand, and felt a kinship with them somehow. They were very welcoming. Hearing about the bond they felt with their children, even in the grip of illness was very important to me personally. Meeting their partners helped me to understand more about my Dad’s position. Also, introducing Isla to the families that meet through APP helped me to talk to her about it all in a way she could understand.

Like many, you hadn’t heard of Postpartum Psychosis before making this film. Has finding out about PP helped or has it increased your sadness or anger at the loss of your mother?

I was very ignorant about mental health in general I think, before making the film, even though I probably felt I was quite clued up. I was incredibly ignorant about the postpartum period in particular, and yes, I hadn’t heard of PP. It’s quite complex how I feel about her PP, tied as it is to an era when treatment wasn’t as good as it is now and awareness was very low. I think people working in psychiatric care have a very tough job to do, and they probably did their best with the tools they had available to them. I wish there had been a different outcome, but it’s impossible to know if there were issues with her treatment beyond the large doses of drugs mentioned in her notes, which were commonplace at the time, but we now know can be harmful. I was angry that her illness seemed to have made it more difficult for people to talk about her after she was gone. Hopefully that stigma is changing.

What would you most like to change in the future for other families affected by PP?

I think more knowledge about PP in the wider community in future will mean that it will be picked up earlier and treatment given earlier. I think also that the broader understanding we have about mental health seems to be growing, so hopefully that will continue. I hope families can feel supported as a whole - partners and children too - and that there are the proper facilities, including more MBUs, so that the right care can be given to everyone regardless of where they live.

Has the making of the film and its wonderful reception helped you personally? Do you see its success as honouring your mother?

It does make me feel a sense of pride that I am able to share her story with people, and I will be able to share it with more people if the film has a good reception. In extreme cases, mental illness can rob someone of their life, and even of the way they are remembered. I hope that I’m changing the balance for my Mother a bit. I want people to hear about her, ordinary and extraordinary in her own way, as we all are.

What’s next for you and for the film?

I’m working hard with the team to get the film out to UK cinema audiences from 3rdrd May 2019. Please like, and share on Facebook or Twitter.

We want to talk to people at screenings and give them more info about PP, and a space to share their experiences about mental health, supported by APP.

I want to make a tool to help families who want to start a difficult conversation about mental health, by creating a 360 degree video, which is a media I work in outside of this film. The film will show the way other families talk, with natural conversations between parents and children about PP and other issues around mental health.

After that, I’m keen to do something different, and have been developing some fiction projects, but I’m still drawn to stories which relate in some way to mental health and identity. I’m sure Irene’s Ghost will keep me busy for a while yet though!

'Irene's Ghost' screenings:

For more information, visit irenesghost.com

If you have experienced PP and are interested in helping Iain film discussions about mental health between parents and children, please get in touch: app@www.app-network.org

24 April 2019

Thank you Helen!

Thank you to Helen who raised over £200 serving up delicious home-baked cakes with tea coffee at the Northallerton Park Run, which took place on Easter Saturday, 20th April.

Helen was busy baking up some lovely cakes and buns and the sun shone brightly on the day - it looks fantastic and the runners were definitely well looked after! You can still donate via Helen's JustGiving page here.

A huge thank you to Helen for all your amazing baking skills and hard work in support of APP!

23 April 2019

Maternity and Midwifery Festival 2019

On the 9th April, Dr Jess Heron, APP Director and Dr Sally Wilson, APP Training Coordinator, presented at the Midlands Maternity and Midwifery Festival at Leicester football club. They spoke to a packed conference hall of midwives, including student midwives about an evaluation of the 1-day workforce training that APP offer.

This series of conferences run across the UK and are a great platform for raising awareness of postpartum psychosis amongst midwives and other health professionals, which is one of APP's aims for 2019.

APP want to help health professionals to recognise early signs and symptoms, promote the importance of timely treatment, and talk about recovery and support needs for women and their families affected by postpartum psychosis. We are campaigning this year for compulsory training in perinatal mental health, including Postpartum Psychosis for midwives.

Training in Postpartum Psychosis: Evaluation & Lessons - Dr Jessica Heron and Dr Sally Wilson from Narrowcast Media Group on Vimeo.

Can you help us? Future Midwife standards consultation

The Nursing & Midwifery Council have recently announced a consultation on the 'Future Midwife: Standards of Proficiency for Midwives'. We are delighted that Postpartum Psychosis has been specifically included as a core learning topic for midwives. We would like to make sure it stays included as these standards are refined and consulted upon. If you have experienced PP and would like to make comments, or are a midwife and would like to state how important it is that Postpartum Psychosis is in core midwife standards.

Please respond to the consultation by the 9th May 2019 via here or, please get in touch with Sally if you would like to give any feedback for APP's response. If you have have comments, quotes and stories that you could share with us about your midwifery care, these are really useful in helping to campaign.

APP will be responding to make sure postpartum psychosis and training in PP for midwives remains a focus in these standards.

A fantastic 'Ladies Charity Night'!

A big Thank You to Debbie Walter and Naomi Gibbs who hosted a fantastic Ladies charity event supporting West Berkshire Parent Carer Forum and APP at Deanwood Park, Stockcross on Saturday 30th March 2019.

Debbie reported back from the event:
"Let’s raise a glass to the amazing team of helpers, donators, professionals and attendees!
The Ladies charity event was made possible by Deanwood Park in Stockcross generously providing their fabulous function room which was a perfect venue for our ladies. Their staff team Nigel, Flip, Ben and Chris worked tirelessly and went the extra mile to make the event special.

Naomi Gibbs, beauty therapist and director of The Hourglass wanted to bring together women to celebrate their natural beauty and raise funds for charities that made a direct difference to families’ lives. Working alongside a lifelong friend and professional mobile hair stylist Debbie at Hair Alchemy they decided to offer an evening of professional hair and beauty, shopping and of course cocktails!

Guests were spoilt for choice with two fabulous make-up artists Chloe (Fox and Hounds) and Ella Beauty who enhanced their make-up and offered professional advice. They truly worked their magic. Debbie was then was on hand to tweak their hair and spruce their styles. Ladies were then able to have a professional photo shoot with Dawn Lowe. Fiona Worby was present from West Berkshire Parent Carer Forum, a local special needs charity and the co-host Debbie Walter was representing the charity Action on Postpartum Psychosis, a charity which had personally supported her and her family.

Also supporting the event were stall holders Ann-Marie with homemade chocolate gifts, Emil from Vamped demonstrating cosmetic fillers and discussing Botox. Debbie Medlin a special needs massage therapist gave up her time with friend offering sample massage treatments on the night. There was a fabulous pop up clothes shop, manned by Angela Watson and many clothes and gifts were donated by generous clients. Ladies were also able to book a clairvoyant reading with Lorraine Lees who proved very accurate and popular.

The night managed to successfully raised £660 which will be split between the charities. A huge thank-you to the generosity of local companies such as: Camp Hopson, Lorraine Lees, The Woodpecker, Crab and Boar, Compton Barbers, UK Paintball, Emma James Photography, Dawn L Lowe Photography, Pilates with Danni, The Hourglass, Hair Alchemy, Massage Therapy with Debbie Medlin, The Fox and Hounds, cakes by Kate, Deanwood Park Golf and Deanwood Park therapies, Kylie Barke and Philippa Ponting."

A very big thank you to Debbie and Naomi for organising the event and to everyone who took part and so generously donated gifts as well - we couldn't do this without you!

17 April 2019

Oórlagh and team take on the Belfast Marathon!

A big thank you to Oórlagh and team of friends and family who are taking on the Belfast Marathon and 9 Mile Walk on Sunday 5th May in aid of APP!

The 2019 Deep RiverRock Belfast City Marathon route begins in Stormont and finishes at Ormeau Park with over 17,000 participants expected to hit the streets of North, South, East and West of the City.

Oórlagh says: "All donations will help create much needed awareness and support for such an important charity, APP. Thank you to all those who have already sponsored with cash. Greatly appreciated."

Please support Oórlagh and her team and donate what you can via her JustGiving page here. Huge thanks to everyone taking part!

4 April 2019

An amazing evening of Music 4 Mums!

A huge Thank You to everyone involved in the Music 4 Mums event that took place at The Gresham Centre, London, on Friday 29th March. It was a truly fantastic evening, and a very special event to start APP’s Music 4 Mums celebrations for 2019, to mark UK Maternal Mental Health Awareness Week (29 April to 3rd May).

APP's Hannah (Peer Support & Regional Rep Co-ordinator) was delighted to attend and speak at the event, she says:

"When I was asked to say a few words between numbers sung by the Choir Baby, Kings Place Choir and Great Ormond Street Choir, with their Director Naomi Hammerton, I felt really lucky on so many levels to be there. It was a wonderful opportunity to spend time with London Regional APP volunteers, Sophie and Jessie, who were fantastic in helping to represent APP at the packed event held in the beautiful surroundings and acoustics of the Gresham Centre, in the city of London near St Paul’s. We also bumped into APP Media volunteer Fiona and managed to grab a photo with her in the interval! We were accepting donations to APP including at the bar which was busy all evening and we had many opportunities to talk to audience members about APP and the work we are doing to support women and families affected by PP.

The opportunity to raise awareness of the devastating nature of PP and also what APP can offer, including our information and award-winning peer support, had also included an interview with Sophie as part of a piece on the ITN London news that evening, and a brief appearance by me about what PP was – a short sound-bite but important to have APP in there. Thanks to Sophie for sharing her story and also the brilliant venue of her employer’s roof garden with views of the city, which the film crew were very impressed by!

The event had been organised in memory of a choir member, Amy, who sadly lost her life after suffering an episode of PP last year. It was clear how much she had meant to the singers as they performed rousing songs, which were interspersed with moments of comedy, dark humour and gritty readings by esteemed performers including Romola Garai and Alex Waldmann. BAFTA award-winning actress Imelda Staunton was breathtaking in her reading of Jessica Pidsley’s “Mutha Courage”, written about her experience of PP and featuring in a recent Radio 4 documentary (read more about it here). The audience were enthralled and moved by Imelda’s passionate account of Jessica’s experience. The evening ended with an emotional tribute by Amy’s husband Phil, who joined the choir in their last number. There was not a dry eye in the house as he spoke about losing his wife and the stigma which still surrounds psychosis.

As we spoke to the audience and members of Amy’s family at the end of the performance, we all felt that the evening had been one we would remember for a very long time. PP Mums are amazing and the loss of anyone from this horrific yet treatable illness was something that was important to be part of. It was a privilege to be just a small part of this fantastic event."

You can watch a short clip from the event via Kings Place Choir's Twitter feed here

1 April 2019

Corinne's story: "I felt alive, confident and magical".

“Stuck in reverse” as the song goes…

This interpretation will be in the form of snap shots in time as it is in life. The experience I had has mostly faded but every so often (as anything that causes a big impact on your life tends to do) a memory of a time in our life pops into our head, triggered by a news item, an article, or an association. And this experience of having the line of a song pop into my head has always been there for me. During my psychosis and with associated mania, the ability to pluck ‘puns’ and ‘songs’ out of thin air was electrifying and exhilarating in the first degree: I felt alive, confident and magical.

From the present looking back my life is often about the need to catch up and fill in the gaps that were taken from my anticipated version of what having a child was all about. This includes learning Reiki as a way of continued healing for myself and others, working from a local hub that supports women and their families before, during and after childbirth and most recently setting up a small group for toddlers to experience music via percussion instruments and song.

Hannah was born on 4th July 1990 in the early hours of the morning in the place I had but a few short weeks before worked as a midwife, blurring of lines and boundaries showing itself already. The labour was long and augmented, the delivery scary and traumatic. To a background of a really hot summer, the World Cup and a full to overflowing maternity unit and special care baby unit.

I remember thinking my baby had died as the time between eventual delivery and her first cry felt like an eternity. I was shown a quick glimpse of our daughter before she was rushed away in an incubator by the paediatricians with my husband Kevin following as her chaperone. Kevin came back with a photograph the Special care staff had taken of Hannah, with tubes and leads everywhere, a misshaped head and the distinctive mark of the shape of forceps over her swollen eyes. I hugged the photograph and longed to meet her properly in person.

This was my former place of work and full to capacity. I needed a blood transfusion and had a catheter in place. I was exhausted but could not really sleep.

Fast forward three days. I just thought I was superwoman and was going up and down the back stairs to visit Hannah. I had registered her birth because I knew the Registrar and on which days she visited the ward.

That night I was very agitated and kept asking over and over why Kevin or anybody else had not thanked me. I felt everything was speeding up; I was talking rapidly and had this incredible sinking feeling.

The Sister on the ward had told Kevin she was worried about how much water I was drinking, jug after jug, after jug. At the time I felt it was helping correct the sinking feeling. Everything felt as if I was in a bizarre sci-fi film and the only way I can describe it was that everything felt in reverse and I was in some sort of Vortex.

Behind the scenes Kevin had expressed concern about my behaviour and told the night staff; luckily it was Lynne, someone I had trained with and knew me pretty well. The day staff felt they had no evidence of strange behaviour and if I was disorientated it was understandable because of the traumatic delivery. Kevin remembered me telling him about a time when I did my community experience where a new mother had felt she had special powers and that if she dropped her baby out of the top floor window the baby would have grown angel wings and floated away.

His concern, therefore, was that I would harm Hannah in some way and she, more than I, needed protection. He had no more insight or information about the effects of Postpartum Psychosis and the danger it would have to me.

Hannah was recovering from her ordeal and was spending parts of the day with me and going back to Special care for her tests and intravenous antibiotics.

On day ten we transferred to Park Prewett Hospital Mother and Baby Unit. I was visited by a psychiatrist on the ward, assessed and given tranquillisers and anti-psychotic medication. The delay was to ensure Hannah and I were well enough to travel. Another midwife, Stella, a previous student midwife I had helped train, was assigned to accompany us in our car while Kevin drove us to Basingstoke. I wasn’t really aware of the plan and where or why I was going.

The car journey was terrifying. I felt as if everything was super-fast while still feeling this sinking feeling and having to sink further and further down the seat to an almost lying position whilst trying to keep drinking water to help prevent the feeling but to no avail. At one point I was so scared I opened the car door to try and escape.

In the grounds at Park Prewett hospital, about a week after first arriving

On arrival at Downside Mother and Baby Unit (who picked the name I wonder?) all I could hear was a very distressed lady calling out constantly “I can’t care for him. I can’t care for him.” I knew Park Prewett Hospital from my Psychiatric experience as a student nurse and didn’t think I belonged here and didn’t understand why I had come because there was nothing wrong with me.

Fast forward a few weeks. The initial mania had been replaced by a drugged slowing. I was heavily sedated and given a sun cream to wear because the Largactil had the side effect of making the skin very sensitive to sunlight and prevent burning. I was told would have to stop breastfeeding, which had been intermittent because of my unpredictability anyway. I found that Hannah had taken easily to the breast and I had had no problems feeding her. A tank was set up in the kitchen along with all the other mum’s sterilising units in my part of our shared kitchen.

The ward was part of the old Victorian building which had high ceilings and an ancient plumbing system. I remember thinking that that was part of my many ‘tests’ I had been set. I wasn’t told it would take a long time for the water to go from stone cold to warm and eventually learnt that it was ok to run the tap for a long time instead of my method of filling a bucket from the urn and hand filling the bath.

All of this also happened before the smoking ban and I was never sure who were our nurses and who were patients as both openly smoked in the communal lounge.

We had our own rooms at the end of a long corridor and the nursery was behind the Sister’s office where we were all allocated an old fashion Silver Cross pram to place our babies in during the day.

I had been living and caring for Hannah for around four months and had sunk into a depression. After discussion it was decided that ECT (Electroconvulsive therapy) would be the quickest way to reverse the brain out of depression. An initial course of ten was ordered and I went once a week in a mini bus to the ECT suite a la ‘one flew Over a Cuckoo’s Nest’. The first time I went a very kind houseman cycled over so he could hold my hand as I had never had an anaesthetic before and felt pretty frightened.

I got a massive headache due to the side effects of ECT and Hannah was always cared for by the nursing staff for a few hours while I recovered in my darkened room. The more lasting effect was short term memory loss. After another round of ECT which improved the depression, I was unable to recall Nursery Rhymes and a few other dates and events. Over the course of time and years these all eventually came back to me. Fast forward to the present and this is why I am so happy to be offering Music with Baby classes; it feels very healing as well as enjoyable.

There was certainly a wonderful camaraderie we woman developed and a lot of us stayed in touch long after our eventual discharge from hospital.

Coming home was gradual and involved just one night at home, then two, then a weekend, a long weekend and a full week until our final discharge.

When I did get home, I missed the ward so much as it felt safe and there was always someone there to ask questions and talk to. Five months later and I still felt incredibly isolated and alone and found it hard to pick up any threads of my former life. Mothers I had known in antenatal classes were in their groove and routines and I felt very different and ashamed that somehow, I was responsible for getting ill. Some family members and friends preferred not to mention my illness which only added to the stigma.

I missed the daily crossword with coffee at ten, the walks in the extensive grounds with Bernie, the shop, the hairdressers (not my best look) and Art therapy.

Fast forward to nine months later and I revisited the ward as it was suggested to me that I could offer hope to the women who had through no fault of their own found themselves in this other strange and frightening void after childbirth.

This is an abridged version of events. Which offers the light and the shade of my experience of Postpartum Psychosis. I wish to always champion the marginalised person in any situation, and I now feel very empowered. Looking back, I have no regrets and own the experience as part of my life story. It has been a great leveller and I now view the world from a different perspective. You can recover from this illness. It happened twice to me, and I also developed Manic Depression, but I eventually recovered. It will change you forever but not for the worse.

8 March 2019

New project in South Wales

APP was delighted to be awarded a grant from Mind and Agenda’s Women Side by Side Programme for a one-year project in Aneurin Bevan University Health Board area of South Wales. The South Wales ActiononPP project will help us to:

Set up a monthly face-to-face peer support group in the Aneurin Bevan Health Board region, but open to women from across South Wales
Train and support a group of South Wales peer support volunteers
Network with other agencies and develop methods of engaging and supporting women with PP, particularly women experiencing multiple disadvantage.
Translate our patient information guides into Welsh.
Raise awareness of PP in the region, amongst health professionals and in the media.
Support women who are recently diagnosed and recovering, women at risk of developing PP and women who may have experienced PP many years ago but who are still experiencing the effects

We hope that through this project we can build and support an active community of volunteers in the region to support women and families affected by PP and to work towards real change in how PP is understood and treated in the region. Alongside this grant, we will be looking for opportunities to train health professionals throughout Wales and campaign for change, including for a mother and baby unit.

APP will be looking for two people to work with us (part-time) on this project, if you’d like to find out more about the project, or to be notified when we advertise the roles, please email us.

19 February 2019

Singing, celebration, spoken word and sisterhood!

We are delighted to announce the first Music 4 Mums event for 2019! Taking place on Friday 29th March'Music 4 Mums' is an evening of singing, celebration, spoken word and sisterhood. Featuring a stellar line up of female artists and special choral performances by Kings Place Choir, Great Ormond Street Staff and Parent Choir and Choir Baby, a choir for new Mums and Dads.

"This event will raise money for APP, and launch their ‘Music 4 Mums’ campaign for 2019. This campaign aims to celebrate mums with musical events all over the country, raising awareness of the need for adequate maternal mental health care services in every area of the UK, and raising much-needed funds to support APP’s vital work supporting women and families affected by postpartum psychosis....This event is an opportunity for people to come together in support of each other, lending their voices to the voiceless and helping to stamp out the dangerous stigma attached to motherhood and mental health, whilst raising funds for Action on Postpartum Psychosis.

Please add your voice to this important conversation by coming along. Every scrap of awareness and funding will go towards helping a Mum get back on her feet so she can enjoy her new baby and hold onto the future she deserves."

You can book tickets online via Eventbrite here £15 per ticket + booking fee, or find out more via the Facebook event page here.

A very big thank you to everyone involved, we can't wait to come along and experience a fantastic night!

30 January 2019

APP at this year's Royal Parks Half!

APP are looking for two enthusiastic runners to take part in this year's Royal Parks Half Marathon on 13th October 2019, could it be you?!

This stunning central London Half Marathon, takes in some of the capital's world-famous landmarks on closed roads, and four of London's eight Royal Parks - Hyde Park, The Green Park, St James's Park and Kensington Gardens.

The award-winning event was set up as an annual fundraising initiative, raising sustainable funds for the Royal Parks to support London’s eight Royal Parks, and enabling charities of all sizes to be involved in a major challenge event.

If you would like to run the Royal Parks Half Marathon and raise some much needed funds for APP at the same time please get in touch with us via fundraising@www.app-network.org Thank You!

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Can you help us? Future Midwife standards consultation

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