Sunday 11 May 2014

PP Survivors United

A few weeks ago now I went to Birmingham to spend a day with Action (on) Postpartum Psychosis.  This charity has grown from an academic-led research participants network a decade ago, into now an amazing organisation providing much-needed information and peer support to mums and their families.

A diagnosis of Postpartum Psychosis (PP) often comes completely out-of-the-blue.  At a time when you "should" be feeling nothing but overwhelming joy in your longed-for baby.  While the new mum is going out of her mind, her family will likely be thinking and fearing the worst: will she ever recover? When will she leave psychiatric hospital?  Who is going to look after the baby?  How will life ever be the same again?

Psychiatric crisis teams are, understandably, centred on the new mother.  Over-stretched NHS resources are all focused on treating the psychosis and minimising risks to mother and baby.  Treatment is intensive, and professional thoughts have not yet turned to the partner, and wider family.   But upon hearing that your loved one, the mother of your child, has been diagnosed with psychosis the first thing many partners need is simple information.  This is where an organisation like APP can make a world of difference.  If I google "postpartum psychosis", fortunately, the first two pages of search results are filled with charities, healthcare and parenting organisations offering factual information on the condition.  It's not until further down on page 4 and beyond that the scary "baby killer / maternal suicide" stories dominate.  This is due, in large part, to the tireless effort of APP and others who seek to inform, educate and support.  Without these organisations, families and carers would be left to fear the worst.

I know this first hand.  It turns out that during my time as an inpatient at a Mother & Baby Unit, my family were helped immeasurably by the online peer support forum provided by APP.  My husband had found a network of helpful souls, who understood exactly what he was going through and were more than willing to help and guide him through my illness, hour by hour, day by day.  They gave him practical advice on how best to support me at the MBU, what to expect in terms of the illness and recovery, and how to look after himself too.  They were with him through it all: my trips to A&E for infection, my refusals to eat, my psychotic hallucinations and fears.  When my husband was going through hell on earth, they gave him hope that he (we) would come out the other side.  And they were absolutely right.

A few weeks after my discharge I read the discussion thread (which went on for dozens of forum pages!) and was just amazed by how kind and supportive everyone had been.  I wished then that I could thank each and every one of those forum users, whose avatar names will stay with me forever.

Turns out, a year later, that I was going to be given this chance!

The volunteers' day, on 26 April 2014 at the Barberry mental health centre in Birmingham, was a chance for staff, trustees and "survivors" (and their families) to come together for a few hours.  To learn more about PP, the work of the charity, the different roles that volunteers can play - and simply to share their stories and meet others who just "get it".  It was also the largest gathering of PP survivors ever to take place under one roof!

I wasn't alone in feeling nervous on the train up to Birmingham.  We were all unsure how the day would unfold, and whether it might all get a little too harrowing.  Yes, it was an emotional experience.  I cried a few times during the day.  But I am so very glad that I went.  Remembering our psychotic experiences was never going to be easy, but (for me at least) talking about it openly, in such a supportive and understanding environment, has helped me to make a little more sense of it all.  For example, when I said I was having trouble fully trusting my senses again, and being nervous of another brain malfunction, my words were met with empathetic nods and "I feel that way too!"s.  Just knowing I wasn't alone, that I wasn't the only one to have trouble dealing with the aftermath of a psychosis, gave me more confidence on myself.

I am keen to "pay forward" the help that my family received - to be more active on the peer support forum, to raise some funds (more on my "Purple Party" plans in a future post!), and to help the regional coordinator in London reach as many local health professionals and networks as possible.  There is lots still to do in terms of taking our "lived experience" to groups such as midwives, GPs and health visitors.  There are still too many examples of misunderstanding and misinformation around PP.  And survivors of PP are uniquely well-placed to help with this.  Thanks to the day in Birmingham, and the tireless work of APP, I now know much more clearly how I can help with this.

(Thanks to APP for the use of these images)


  1. It was an honour to meet you and incredibly special to see how much our own painful experience is now 'paying forward' Look forward to hearing your purple party plans! I just took a delivery of beautiful handmade bags to sell at the south west purple party so getting excited for August. Also wanted to commend you on the video you did for Rethink - I realise now that was why I felt a flicker of recognition in Birmingham! N xx

  2. It's good that you're using your experience to help others. You're a really good person.

  3. I think you are very brave writing this, it must have been hard. I also admire the fact that you are using your experience to help others.

    Thank you for linking up with the #WeekendBlogHop

    Laura x x x

  4. I think it's fantastic that you would look into giving something back to an organisation that clearly helped both you and your family. We always forget about the family in situations like this.
    Thanks for linking up with #WeekendBlogHop

  5. How wonderful to see someone being so selfless and using their experience to help others!

    Thank you for linkup your story up with Vicky and myself for Mental Health Awareness Week!

    Expat Frugalista