Sunday 27 December 2015

What is postpartum psychosis?

Regular viewers of Eastenders are full of questions right now.  Does Stacey have PND? Who is the dad, if it's not Martin or Kush? Why is she acting so strangely?

The Eastenders team have already revealed that Stacey is in fact suffering from a rare birth complication called Postpartum Psychosis (PP), which sadly is not all that unusual in women with bipolar disorder (such as poor Stacey).

As someone who has been through it, and come out the other side, I thought I'd gather some thoughts together on the subject.

This is not a dream
Hallucinations (auditory and visual) aren't like having a bad dream or being a bit trippy.  There aren't any blurred edges or ghost-like figures or spooky whispers in the dark.  Hallucinations were as real as the world around me today: I could see, hear, touch, people who I experienced as completely there.  I remember the situations now, just as I remember what I had for dinner last night.  I reacted to them as if they were happening to me, right there and then.

This is not a joke
I guess it is possible to have a "benign" or even quite pleasant psychosis.  That's not my experience, but it must technically be possible.  But psychosis seems to be rooted in trauma and distress.  So it manifests itself as brutally and as nastily as the innermost reaches of the brain can conjure up.  Unfortunately for me (someone who devoured horror novels as a teenager) my brain could conjure up plenty of darkness and depravity.  Worst fears, tortures, humiliations - they were all brought to the surface by psychosis.

This is it.
I fought the psychosis like a woman possessed - because that's what I was.  I wasn't going to take it lying down: being suffocated, burnt alive, alone forever, dragged to hell.  I fought it.  Because I had to. It isn't the psychosis itself that is dangerous (after all, it is all in the head) but it is the real, physical, reaction to it.  The natural human instinct to run, fight, escape.  Psychotic people have jumped from buildings, thrown themselves onto roads, lashed out at others, become so mentally distressed they make themselves physically sick.  This is why PP must be treated as an emergency, with intensive inpatient treatment (ideally in a specialist Mother and Baby Unit).

I was very lucky to have been admitted to the MBU relatively quickly, where I was safe from the physical effects of the illness.  The psychosis could run its course under careful clinical supervision, and there was absolutely no risk to my baby (who was being expertly cared for in the ward nursery).

I won't give any spoilers for Eastenders fans, but viewers will need to brace themselves: Stacey's journey will be raw and real and incredibly moving.

For lots more information (as well as support) please see Action on Postpartum Psychosis: www.app-network.org 

Wednesday 23 December 2015

Ghosts of Christmas Past

With less than 48 hours to go, Christmas 2015 is looking like my first properly mental-illness-free festive period in my adult life. 
*Touch Wood*

I don't know if this counts as seasonal affective disorder, but for whatever reason my mood never fails to dip towards the end of autumn, just in time for full-blown depression for December 25th.  Merry Christmas!

Ways I have spent Christmases past: 
- in tears 
- in debt (having overspent on credit cards on loved ones' presents, to make up for my horrendous moods)
- in a state of numbness 
- in a mess (unable to summon the enthusiasm to wear something festive, or blow dry my hair, on slap on some make-up).

December 2012 shook all that up: I was on home leave from psychiatric hospital, my eight week old son in tow.  I was just grateful to be alive, to be lucid, to be a person in the world, to not be in hell any more.  Those few hours spent at home cemented in me what was important: health and happiness. Family and friends. Sanity.  Nothing else mattered.  Not the presents I bought, the clothes I wore, the smiles I offered. 

The following year, we relished the chance to be properly together, just the three of us.  It was low-key, but special.  I was still somewhat fragile, but on an even keel.  We got a tree, we cooked a big roast with all the trimmings, we lovingly prepared a stocking for The Boy.

The year after that, I was recovering from a spell of acute anxiety.  I had taken on perhaps one or two too many commitments over the summer and early autumn, which led to one or two restless nights, which led to a real fear of becoming psychotic again. This "relapse" shook me to my core, and I spent Christmas 2014 still reeling from it.

But this year - 2015 - I can honestly appraise myself as being OK.  I've been busy, for sure, but with The Boy now at nursery I finally have some regular "Me time".  I can tell very quickly when I'm becoming a bit over-anxious, or irritable, hypomanic, or down.  I have the tools (some of which learnt on Mental Health First Aid, some just through experience) to self-correct and stay on track.

So, this Christmas, I will be raising a glass to Good Health and giving thanks for what has been by all accounts a great year.  I'm grateful for every day of good health I have.  But with a super-excited three year old in the house, I am especially grateful for a happy and healthy Christmas day.

❄️ Merry Christmas! ❄️

Tuesday 17 November 2015

Working the room


I couldn't let yesterday go by without jotting down some thoughts.  16 November 2015 has got to go down as one of the more eventful days in my adult life!

It started with a 9am deadline, to submit a tender for a small piece of consultancy work for a large mental health charity.  This work (if I am lucky enough to get it!) would be a fantastic start to my fledgling business, Out Of My Mind.  I didn't have long to respond to the Invitation To Tender, but I was relatively happy with what I managed to produce over the weekend (mainly because I persuaded an amazing lady with fabulous credentials to partner with me on the bid!).

The day then continued with a visit to the illustrious Royal College of Psychiatrists for their perinatal annual forum.  I was hosting a workshop on peer support and third sector services in perinatal mental health, alongside my patient representative colleague Cath Beard.  Cath was instrumental in setting up the Friends of the Birmingham MBU, as well as volunteering with MaternalOCD.

The whole day was really interesting, with a brilliant keynote speech from Heather O'Mahen of Exeter University (on adapting IAPT for perinatal women) and a lively debate on the merits of extending perinatal services to families of children up to age 5.  Our peer support workshop was incredibly well attended, and the audience (of perinatal psychiatrists, psychologists and other health professionals) seemed really engaged with what Cath and I were presenting.


Anyone who has read this blog recently will know how passionate I have become about good quality peer support.  I hope we managed to convey both the amazing opportunities and potential risks of these services.  The feedback we got afterwards certainly seemed to suggest so.

After a quick glass of wine and a catch up with my favourite team from the Bethlem, it was home in an Uber to quickly change into my glad rags for the Mind Media Awards.  My beautiful friend Eve and I had been invited by the Mind Media team, as we are both currently working with them on a TOP SECRET popular TV show (watch this space, around Christmas time).  After some agonising over what to wear I was soon dolled up in my floor-length metallic gold dress, with full make-up (a rarity for me) and full Spanx for good measure.

Eve and I arrived at The Troxy (a spectacular Art Deco theatre in East London) to find the place already crammed with media types quaffing the free booze.  Help, we didn't know anyone!  How does one schmooze at this sort of event?!?

I quickly spotted the talented Victoria McDonald - health correspondent for Channel Four News, one of the award judges, and a shortlisted nominee herself for work including an interview with yours truly last year!  She was happy to chat for a while and I soon relaxed.  


Before taking our seats for the ceremony, Eve and I had a chance to promote the #PNDFamily cause in the photo booth:
I have never been so pleased with a photo of myself before!

The ceremony was hosted by former psychiatric nurse and now national institution herself, Jo Brand.  She gave us some hilarious anecdotes from her time on a psychiatric emergency ward, dealing with over-zealous police recruits and tyrannical matrons.  There was also many serious messages in her introduction: about the "theme" of the evening (suicide) and how there is still plenty work to be done to remove the stigma of mental illness.

The winners, and to be fair all the shortlisted nominees, were all inspirational: putting out difficult messages, tackling taboo subjects, smashing stigma and speaking out.  I was delighted to see 24 Hours in A&E pick up a prize, as well as Victoria in the current affairs category (she was even kind enough to give me a wee shout out from the stage!).  

Nothing could beat the final award of the night however: a special "Making A Difference" award to Jonny Benjamin and his "Mike", Neil Laybourn.  Jonny and Neil spoke so brilliantly about what happened on Waterloo Bridge seven years ago, and how their lives have changed since.  I am so grateful to Neil for stopping Jonny jump that day, and for everything he continues to do to raise awareness and get people talking.  And Jonny.  Well Jonny is just my hero.  One of the nicest guys I've ever met, and so generous with his time and his heart.  ❤️

The rest of the night was just a warm fuzzy blur of free-flowing wine, not much food, and ensnaring any vaguely famous or well-connected person in Eve and I's vicelike perinatal pincer grip.  Here are just a few of the people we met, and talked to about postpartum psychosis and maternal mental health:
Myself, Dr Ranj from CBeebies, and Eve
Myself and David Robb aka Dr Clarkson from Downton Abbey!!

Myself, the beautiful Frankie Bridge, and the equally gorgeous Eve.

I really hope all this great work, and the amazing connections made at the event, continues into 2016.  Well done to Mind Charity and especially their fantastic media team for all their hard work in 2015.

Wednesday 28 October 2015

Peer support: How to make it Effective, Safe and FUN.

From very early on in my recovery from postpartum psychosis, I felt a strong compulsion to try and help others.  Not only by sharing my story openly and honestly, but also by sharing the lessons of experience.  I knew that such support would have helped me enormously in the dark days of psychiatric care, depression and overwhelming anxiety.

But where to begin?

I'd spent my pre-psychosis life as an economist and management consultant.  I was used to solving problems, yes, but had no experience of caring for or supporting others.  I wasn't a "people person".  

My first foray into the world of peer support was not a great success.  I was seduced by a charity's promise of instant support group set-up, advertising material and name recognition.  My group was hence born overnight.  I received a large (and no doubt expensive) pack of promotional posters and pamphlets and proceeded to call in to all the GP surgeries in the local area.  I excitedly booked a community hall for my first meeting, and went about baking cakes and purchasing coffee supplies.  What more need I have done?

Within a few short weeks it was hopelessly apparent that much, much, more needed to be in place.

Simple things, like my criminal record check, had not been verified.

I had received no training, or even basic guidance.

There was no oversight in place.

Women - often very vulnerable women - were being referred to me through the charity's website, with no inkling that I was completely unprepared and unsupported to help them. 

I had received no training or advice in children's and vulnerable adults' safeguarding.  Or in how to enforce healthy boundaries between my role as peer supporter and the rest of my life.

There were other concerns too, but these were the glaring ones.

Luckily, a month or two later, I came to meet an inspirational peer supporter and charity founder Jessica Warne.  Jessica was a few years' ahead of me in terms of her own recovery and journey as a peer supporter.  What had started as a simple coffee morning in her own front room had transformed into a registered charity, with a committed and experienced board of trustees, good working relationships with other local organisations, and a clear programme of peer and professional support.

Jessica and I met over coffee near Oxford Circus (our halfway house, given her base in North London and mine in South) and it soon became clear our visions matched.  

Jessica asked me to come aboard Cocoon Family Support formally, and become the South London operation.  Immediately I felt relief.  Things fell into place very quickly.  A third member, Rosie, joined our little gang and there was no stopping us.

Cocoon Family Support operates with a "whatever works" mentality.  We offer peer support (one-to-one and group), individual counselling sessions (usually in six week blocks), mindfulness groups, art therapy, drama and music therapy, guided walking groups and complementary therapies such as Reiki.  The groups are well managed and all peer supporters are trained and supervised by professionals.

We are an ambitious small charity, but we do not run before we can walk.  We offer only what we know we can deliver.  Geographically, this means only operating within certain London boroughs.  As a practice, it means we only offer therapies we are qualified to deliver.

"But peer support should be informal! A chat over coffee and cake!  Why all this procedure and officiousness?!" I hear you cry.

The answer is that, yes, some peer support can be very informal indeed: a kind word from a fellow inpatient.  A chat with an old friend.  A walk in the park. 

But the moment you set yourself up as a Peer Supporter, the moment you press Publish on a website, set up those official-looking social media handles, design a convincing logo, you are promising something else entirely.

Families - often vulnerable, desperate and let down by official health and social care services - come to these charities and peer support groups because they promise something.  Not necessarily a cure, but understanding and empathy at the very least.  These families see the logo, the website, the Twitter account, as an official resource.  To pretend otherwise is disingenuous. 

So by all means, carry on being a supportive friend or relative.  Offer those coffee mornings and walks in the park.  But be aware that formal peer support is very different.

A word on the mechanics of peer support.

A wise tutor told me recently that
"Advice is MY solution to YOUR problem."

What she meant was that simply offering advice can be counterproductive.  You know what you would do in a certain predicament, but you can never fully understand another's plight.  

Peer supporters should instead use their own experiences (and hopefully also their training and knowledge) to offer guidance, information and SUPPORT.  Support, in this context, means:
- an awareness and assessment of any RISKS (if in doubt call 999)
- non-judgemental LISTENING 
- SIGNPOSTING to other appropriate services 
- And ENCOURAGEMENT: either to seek professional help, or to practice self help.

Courses such as Mental Health First Aid (which I am soon to become an official instructor of), and more specialised courses such as suicide prevention and perinatal mental health, can all play a part.  However your charity decides to train its peer supporters, the most important thing is that they ARE trained, and that they have the right foundations in empathy, openness and a willingness to share their experience.

Finally - the fun part.  What makes peer support fun? And rewarding and a fantastic vocation in life?  The answer, for me, is two words: Jessica and Rosie.  Working with two like-minded individuals, who encourage and inspire me on a daily basis, is what makes me so certain that this fledgling career in peer support is for me.  So if I can leave you with just one piece of advice it is this: find your own Jessica and Rosie, treasure them, hitch your dream to their dreams and watch them take off.



If I can help other peer supporters in any way (whether informally, or through provision of the MHFA course) please do not hesitate to get in touch!

Thursday 1 October 2015

What's going on?

A long overdue update from me.

In a nutshell, things are good.  At times, excellent. 

The Boy is a delight, and continues to amaze us every day with the funny things he says and does.  His current obsession is TRAINS, and particularly Thomas and Friends.  He knows the names, colours, numbers, carriages, and freight of dozens of engines.  I'd never even heard of Stephen, or Mavis, or blinking Rheneus (sp?!).

He has settled in brilliantly at his local nursery, with only a few incidents of stray toys being thrown or snacks tipped over. He's learning new things every day, and it's lovely for example to hear him sing songs that someone else has taught him.  The Boy is growing up, and that's just as it should be.

The precious free time I now have is spent catching up around the house, and  working on my various projects.  I have so many irons in the fire I feel like I am running a metaphorical smiddy!  

I have an arrangement now with Dads Matter UK, to provide project management support across their work.  This means I get to work with some inspirational people and build on my skills.  I also get plenty of opportunities to "network" and build up my contacts within the industry.  I was at a fabulous event last week, the launch of Elaine Hanzak's new book in Manchester, where I got to meet many friends and colleagues.  The buzz in the room was palpable and it was amazing to witness so many people from all over the UK working towards a common goal.

I am now an official director of the Perinatal Mental Health Partnership, and am very excited about what the future holds for this organisation.  There is a huge opportunity coming up, to dramatically increase public awareness of perinatal mental illness, and we will be working hard on that over the coming months.  The PMHP has not been an easy "baby" to give birth to, but it has enormous potential.  

More locally, Cocoon Family Support (of which I am now a Trustee) is going from strength to strength as it builds up its peer support groups and counselling service.  I'm honoured to count founder Jessica and director Rosie as good friends.  It does not feel like work with those two in the team!  We are busy planning our reception at the Houses of Parliament later this month, working out who to invite and what to treat them to!

Finally, I am about to embark on my training to become a Mental Health First Aid (MHFA) instructor.  Once qualified, I plan to roll MHFA out to peer supporters across the maternal mental health industry.  I then plan to target corporates, to train MHFA champions in workplaces.  I am fortunate to be working with a dedicated training team at Dads Matter who are also committed to this vision.  I am quietly ambitious about the scope for MHFA.  The time for it is certainly now.

With all these projects to keep ahold of, I decided recently to take the plunge and set myself up as a sole trading enterprise.  Out Of My Mind was born in September 2015 and I have a nascent website and social media presence.  Our tag line is "mental health consulting and training - from a service user's perspective".  I find, for my own sanity's sake, it is good to think of all the different projects (as well as various media appearances and related work) under this one umbrella.  It is the embodiment of my "portfolio career"!  Do check it out at
www.oommconsulting.com 

So there you have it.  There is plenty more I could mention, from a more personal perspective, but perhaps I will leave that for another time.  

Rosey, myself, Jessica and Eve at the Manchester event
Myself and the wonderful Elaine Hanzak
Tracey, Eve, Beth and Myself





Wednesday 12 August 2015

Staying Still


A short update from me.  We have been back from our extended stay in the Caribbean for over two months now.  The transition back to London went as well as we could have hoped for.  We have caught up with family and friends, The Boy has settled incredibly well into his part-time nursery place, and I have been increasingly busy in the world of maternal mental health.  So much so that I must stop a moment and catch my breath.

It is tempting, when things are going well, to cram in as much as humanly possible, to say "Yes!" to every request and generally make hay when the sun shines.  

My life is now full with family commitments (The Boy has a busy social calendar, and we are always mindful of needing to research his options when it comes to starting school in 2017), and catching up with friends.  I have a new trustee role at Cocoon Family Support (our local peer support organisation that I am now affiliated with), and a new part time job at the Perinatal Mental Health Partnership.  To complement this, I have signed up to do Mental Health First Aid instructor training, so I can teach MHFA to all our local peer supporters, as well as take it to the corporate market.  

Besides this work, I have been almost inundated with various media requests.  It's fantastic that mental health (and especially perinatal mental health) is getting great coverage.  I think I have reached the end in terms of telling my own story.  In the last two months, I have been interviewed by a documentary filmmaker, an educational video charity, a national newspaper, a daytime TV show and ITN news! 

I have learned in recent years not to give in to the "Yes impulse".  I'm more likely now to spend the odd hour lying still, cooking a favourite recipe, going for a solitary walk, or watching a bit of quality TV drama.  I know that these pauses give my brain a chance to catch up on itself.  I can tell, when my thoughts and plans are running 19-to-the-dozen, that I need to slow down.  That I need to escape the constant stimuli of modern life.  Mindfulness has helped with this realisation, for sure.  But it is also just getting a bit older and wiser.

There's no special secret to living happily.  It's just learning to know your own rhythms and moods, and how you respond to day to day life.  I guess in the Dark Ages we naturally had to shut down, when the sun went in and there was little to do but watch the stars and the moon.  Now we can be passively entertained 24-7, and I'm not sure that's progress.  It's up to us to learn how to be still, and benefit from the calm to be found there.


Tuesday 4 August 2015

Talking... Therapy.

Here is a primer on different therapies you may be recommended or offered, for perinatal mental illness.  This is not an exhaustive list.  Much more information can be found on the British Association for Counselling and Psychotherapy website at www.bacp.co.uk.  

Before we begin, it is worth mentioning a few things that (in my opinion) therapy is not:
- a path to happiness (it can only teach you how to respond more positively to life's vagaries.  It cannot make life better for you!)
- a one-off treatment (you need to commit to what therapy has taught you, often for the rest of your life)
- something that is "given" to you (the patient is the most important participant in the therapeutic relationship - it is not passive, like most other medical treatments)
- a miracle cure for mental illness (it is entirely possible you might still need that medication... )


Cognitive Behavioural Therapy (CBT)
CBT is commonly prescribed for depression, as well as many other mental illnesses.  It is the therapy associated with the NHS "Improving Access to Psychological Therapies" programme (and is therefore the easiest to access, albeit with the usual waiting list hurdle).  I have been offered CBT in a number of different formats, with various degrees of adherance and success: book-based CBT, online and face-to-face.  I understand it as a way of encouraging the patient to put their Actions ahead of their Thoughts/Feelings.  That is, instead of "I feel sad therefore I cannot possibly get out of bed and get dressed" the person is encouraged to challenge that negative thought process and instead get out of bed regardless of how they feel, in the likelihood that getting dressed will make them feel better.  Don't think, Do.  CBT doesn't require any raking-over of the past, or analysing feelings.  It is a forward-focused process which emphasises coping skills and strategies.

Acceptance and Commitment Therapy (ACT)
This is a process of better understanding our negative feelings and emotions, but learning not to act on them.  It is a process of behaviour change, the goal of which is not necessarily "happiness" but a more positive cycle of feelings--behaviours.

Dialectical Behavioural Therapy (DBT)
DBT grew out of CBT and is designed to encourage even those who are reluctant to change their negative behavious.  The client is helped to "accept" their unhelpful behaviour, as a way of coping with life events and emotions in the short term.

Psychodynamic psychotherapy
Unlike CBT, this method stresses the importance of past events and the unconscious mind in shaping current behaviour.

Family therapy 
As the name suggests, this form of therapy involves the whole family unit.  It focuses on the "transactional" dynamics within the family.

Eye Movement Desensitisation and Reprocessing (EMDR)
EMDR is a very specific therapy to resolve symptoms from very traumatic past events.  It works with the memory function of the brain to reprocess damaging associations.

Mindfulness-based Therapy
Mindfulness is a hugely popular therapy (and activity in general) which guides the person through various exercises in "intentionally paying attention".  It is a way of catching negative thoughts (which are not the object or sensation in which one is supposed to be focused) before they become a vicious cycle.


Thursday 30 July 2015

The "portfolio" career


I grew up in a pre-internet, certainly pre-social media, age when middle class children like me had a certain path to follow.  Exam results such as mine pointed resolutely towards a career in medicine, the law, or perhaps accountancy.  Upon graduation, we were expected to secure a graduate trainee post and ascend the relentless upwards path towards partnership, consultant post or academic tenure.  Our job was to follow instructions, shine in our annual appraisals, and always ensure our consumption and debts grew in line with our salary.

I fell off this well-trodden path towards the end of 2010, when I was thirty years old.

I was finding it harder and harder to conceal and manage my chronic mental illness. I had paid off my student loans and bought my first shoebox of a flat, but I had no sense of professional fulfilment, ambition or vocation.  I looked at my seniors and wondered "did I really want to be them in five or ten years' time?"  Worst still, as a management consultant by this point, I wondered what on earth it was I was selling - and whether there was any value in it anyway?

The exact circumstances of my departure from this professional life are clouded by time and judgement.  But I got married soon after and from that point on (bar a brief excursion into postgraduate education) was focused on my family.  I took up some voluntary work, and helped out a friend with her bakery and coffee shop business, but other than that gave my "career" very little thought.

It has been the roller coaster of life following childbirth that has given me the career which I now hold dear, and which bears no resemblance to any plan set out by parents or school career advisors.  My working hours are spent on social media.  Being an expert service user.  Peer supporter.  Charity trustee.  Blogger, writer and spokesperson.  I think the modern term for this is "portfolio career".  Here is what the term means for me in practice:

Social media
Few people get paid for engaging in social media.  But it is such a big part of my daily routine, that I feel it has almost become part of my job.  Certainly it has allowed me to meet my colleagues and co-
workers in maternal mental health.  I have found my Tribe, my soul mates, and we gaggle around our online water cooler and gossip and moan and pick each other up like in any other workplace.  I communicate with them through twitter and Facebook groups and we occasionally share google documents and Dropbox folders but more often than not ideas are thrashed out and actions agreed via Messenger and gmail.

Expert service user
I knew early on in my recovery from severe mental illness that I wanted to use my experience to help others.  I was incredibly grateful for the care I received, but I knew that not everyone was so lucky - and that even good care can be improved.  I am now a service user representative for my local "strategic clinical network" for perinatal mental health.  I sit alongside GPs, psychiatrists, health visitors and midwifes and we discuss our local services and how they can be improved.  I'm also a patient representative for the Royal College of Psychiatrists "Perinatal Quality Network" which assesses and accredits every Mother and Baby Unit (and an increasing number of community perinatal services) in the country.

Peer supporter
Related to this, I set up a local peer support group targeting other mums recovering from perinatal mental illness.  Or who just needed a break from the usual competitive mummying mother and toddler groups!  I now have a dear friend who runs the group with me and who has helped ensure its future, agreeing a collaboration with an incredible Children's Centre and joining forces with the amazing charity Cocoon Family Support.  I am so thrilled and proud to be part of this, and cannot wait to see what we can achieve together.  I know first-hand what value good (trained and overseen) peer support can be.

Charity trustee
Doing the peer support work has led to me agreeing to become a trustee of the charity.  The plan is hopefully for me to become Chair of Trustees, allowing the founder to take on a more Chief Executive role (and be paid for her tireless work!).  I am excited to be a spokesperson for the charity, and to ensure that if and when we receive Grant funding or other donations that the money is spent wisely and effectively towards our aims.

Blogger
Well, here you are reading the blog, so you know by now that I like to write!  I've always been an opinionated so-and-so, and now I have the perfect platform.  Blogging has led to all sorts of wonderful experiences, and I've met some amazing fellow bloggers who inspire me daily.  I love getting feedback on what I write.  Sometimes even my family members will read a particular post and comment on it, and that means a lot.  But mainly I write for myself.  And for my son, who I hope reads all this one day and understands better where his mum is coming from!

Spokesperson
Leading from the above, I've been given some amazing opportunities to speak out about my experiences.  I've spoken on Channel 4 news, on Good Morning Britain, ITV evening news and I've just given my story to the Saturday supplement of the UK's highest-circulation newspaper.  I took part in the recent Victoria Derbyshire special programme on mental health, which was a life two-hour debate on BBC2.  I am a media volunteer for the Maternal Mental Health Alliance and Action on Postpartum Psychosis, but it is quite common now for me to be contacted by journalists over twitter.  Even more exciting, I was invited last year by the RCPsych to speak at an event in Parliament.  It was the All-Party Parliamentary Groups on mental health, and on "1001 critical days", and I spoke to a packed (and rather grand!) room on what happened to me, all the while looking out over the Thames to the hospital where it all began.  I thought how funny it all was, how far we had come.

So - that's my explanation of my "portfolio career".  I hope my old careers advisor never reads this!

Thursday 23 July 2015

You don't buy me flowers


A large part of the Victoria Derbyshire mental health debate ( http://www.bbc.co.uk/iplayer/episode/b0631kt8/victoria-derbyshire-20072015 ) centred on the issue of "stigma".  It's an often-used term.  We must reduce it!  But what does mental illness stigma mean in practice?

For me, the stigma of mental illness (and particularly the stigma of being admitted to a psychiatric hospital) meant that I spent the best part of three months in said hospital, with only one single visit from a friend, no get well soon cards, no grapes, no flowers.



My friends would not have been unkind or unthinking.  Far from it.  No, they were frightened and embarrassed.  Fearful of how I would react to them knowing I was so ill, and too uncomfortable to acknowledge my madness.  There is a hush around mental illness: Kathryn is finding motherhood difficult.  Kathryn needs a rest.  Kathryn is still recovering from a traumatic birth.  Kathryn is getting some help.

The contrast to a physical illness is clear.  If I had been in hospital with a broken leg or appendicitis then my friends would have been told clearly what I was suffering from, how I was being treated, and my prognosis.

I don't blame my friends at all.  I realise now that they were waiting for my permission to talk about it.  Six months to the day since my admission to hospital I posted the following public message on Facebook:
"This is a long one... Six months ago today I was committed to a psychiatric hospital. I had lost my mind to an illness I had never heard of called postpartum psychosis. The symptoms were the scariest thing I have ever experienced, and even scarier for my family to witness. What should have been the happiest time of our lives, as a new family, turned into a waking nightmare. At various points over the subsequent days and weeks I thought I was going to be burned alive, locked in a room and never let out, in constant pain. I didn't believe I had a family or even that my son had been born.  At one point I even questioned whether the universe itself existed or whether it was just me, in a locked room, alone and in pain for all eternity.

Anyway, with the dedicated care of some amazing doctors and nurses, and with an incredible family who stood by me, I beat the psychosis and reemerged my old self again. But with the best gift I could ever have, my wonderful son.  I was lucky, many others who experience PP are not. Look out for some fundraising activities from me in the future and and thanks for reading. If you are wondering what makes me share such personal info on Facebook, it is to stick two fingers up to mental health stigma and discrimination. It can happen to us all. 
http://www.app-network.org "

My iPhone came alive as soon as I posted that, pinging with messages of support from family and friends.  They thought I was brave, strong, inspirational even.  Many hadn't known why exactly I had been AWOL after The Boy's birth, so they learnt something new about postpartum psychosis.  I was so touched by everyone's support, but at the same time a little sad that that support had to wait until I had spoken up.  Because many psychiatric patients never speak up, and live out their illnesses alone and in shame.

There is very little you can do or say to make matters worse for a severely mentally ill friend or family member.  But there are a hell of a lot of things you can do and say to make things better.  Start with "Hello".  "When can I visit?" "Do you need some clean socks?" "Shall I bring you an M&S sandwich?"  You get the idea!


UPDATE:
I've had some feedback on the above.  There are a few things I should mention here, which I did not realise at the time (being psychotic):
- for the first month or more of my admission, the senior doctors advised against any visitors other than The Husband and occasional visits from close family (my parents).  Other visits were thought to trigger more stress and anxiety.
- a really close pair of friends did attempt to visit earlier on in my stay, but were put off (I didn't realise this at the time).  They did successfully visit later on, when I'd already had some home leave.
- the physical lay out and facilities of the ward were not conducive to successful visits.  My room was too small for visitors, and the communal areas were often noisy and, as you'd expect, full of other patients with their own needs and issues.

One friend (a former mental health nurse herself) made the great point that hospitals (and families) should consider diarising events for patients who are too ill to receive visitors or have much knowledge of what is going on at the time.  This could include photos, notes from friends, and so on.  I think this is a brilliant idea!

Monday 20 July 2015

Mental health in the media

It was with great excitement (tainted only somewhat by the tiredness of a 6am start) that I entered the iconic W1A headquarters of the BBC.  Around 80 mental health survivors, carers and professionals were gathering for a two hour live debate hosted by the Victoria Derbyshire show.

On the guest panel were former government minister Dr Liam Fox MP, comedienne and campaigner Ruby Wax, Dr Adrian James from RCPsych, Dr Liz England from RCGP and Clare Murdoch, head of a large NHS mental health trust.  But this wasn't a Question Time style panel show.  No, here the studio audience had the floor, and the debate took the form of a real discussion: soaring, emotional, raw, shocking at times.  The show was roughly divided into four segments: service user stories, the impact of cuts to mental health care, sectioning and detention, and finally more hopeful stories of recovery.  

There was an impressive range of voices heard: from a beautiful young anorexia survivor who had been turned away from hospital weighing just 4 stone as she wasn't yet ill enough, to a middle aged couple who had battled through the husband's severe clinical depression.  We heard from PTSD sufferers, those with bipolar disorder, borderline personality disorder, severe anxiety - and everything in between. We heard how many acutely unwell people had had to wait months or even years for treatment.  How families and friends had had to step in and provide life saving care.  How people had been discrimated at work or felt stigmatised by their communities.  It was an incredible, wide-ranging, discussion and we could have continued for hours.  Victoria handled the whole thing with ease and sensitivity.

I was initially contacted by the show's producer via twitter.  But I was soon in touch with my friends and colleagues at Action on Postpartum Psychosis: we were all keen that maternal mental health was included in the debate, and my brief was to get in a mention for APP on air.  APP are currently short listed for an important National Lottery award, so every bit of publicity counts!

I was pleased to be picked in advance to tell my story on air, early on in the debate.  I was after another lady, Sarah, who had just given her distressing account of postnatal illness.  Clearly Sarah had struggled to access the right treatment and support, and is still deeply traumatised by her illness and the fact she could not look after her children for a time.  Victoria introduced me at that point, to give an example of what can happen with the right treatment and support.  I always say (despite the trauma of the illness itself) that my story is a fortunate one, full of hope and encouragement.  I visited the very depths of psychotic hell - and survived.  Recovered.  With my baby and my family and my life fully intact.

I am so eager to tell my story because I believe people need to hear it.  Women need to know what can happen following childbirth, but also that it is not the end of the world if you seek help and access the right treatment.  The horrendous stories, like Sarah's, are the result of too few families knowing that this help is out there and that you can recover well from illnesses such as postpartum psychosis.  My job, and the job of charities such as APP, is raise awareness of the illness, while at the same time continuing to lobby government for the resources needed to provide the life-saving treatment necessary for it.

Sadly our efforts were somewhat undermined shortly after the show aired, when the main BBC News item on the debate was headlined "I wanted to kill my children".  Clickbait headlines such as this are the reason I am so wary of tabloid interviews - but I expected better from the BBC, particularly after such a productive morning.  APP were also furious, and several formal complaints have been made.  I really hope the BBC listens to us and understands why this sort of reporting is so damaging.



You can watch the whole 20 July 2015 Victoria Derbyshire show here:

Coincidentally, The Boy and I also featured again on Channel 4 evening news.  Some archive interview footage is included in Victoria MacDonald's report on unsafe discharge from hospital (around 4.40 minutes in):

Here are a few photos from the day:



Monday 6 July 2015

An Ode to London

(Apologies for the dubious rhyming)

Busy, busy, in a hurry
Pounding the pavement,
Checking for messages
Sipping our coffee.

The tube train shudders
We're herded off
Annoyed, late for work,
Electrical fault.

Across London Bridge
Into the City
To our meetings and emails:
Work's nitty gritty.

But something is wrong
Today no one's hustling:
People are pale 
And nervously talking 

Of bombs and terrorists
One, two - maybe more
Screens fill with carnage 
Twisted metal, pain and gore.

The news brings us stories
Of heroes and villains
Those who have saved
And those who have slain us

And through it all
London's united 
In grief, shock and awe
But together determined

"Don't let them win"
The opinion pieces pleaded
So we reclaimed our streets
Our tube, and our buses.

Because London is nothing
If we don't keep it moving
Working, meeting, dancing, dining,
Keeping our lifeblood going.

So remember the dead,
Fight ignorance and hatred
With love, laughter, tolerance:
London's calling, London's sacred.



Tuesday 23 June 2015

The power of US

Yesterday I had the honour of "climbing out the darkness" with five other survivors of severe postpartum mental illnes.  Two of these ladies I already know and love, the other three were Twitter acquaintances joining us for the first time.  Together, we climbed over the 02 centre (Millenium Dome!).  We did this not to raise money (which we accomplished last year) but to raise awareness of perinatal mental illness.  So lots of photos were taken which were plastered all over our social media afterwards.  The Climb is an international event organised by the incredible Katherine Stone and US-based charity Postpartum Progress.  

Just coming together as a team felt powerful enough in itself.  Among us we had survived suicide attempts, hospitalisation, birth trauma, stigma and discrimination.  But here we were, standing up and being proud of all we have survived.  Speaking up because we know so many women don't ever get that chance.  Because they lost their lives to the illness, or are trapped in communities which refuse to acknowledge or accommodate their conditions. 

We are the survivors.  We aren't stronger or more determined or more gifted than the others.  No.  We are simply the lucky ones.  The ones who found the right help at the right time.  In my own case, I know I was lucky to have such an acute episode of psychosis, so soon after childbirth, that my illness was immediately recognisable.  I was lucky to be living in an area served by a world-class Mother and Baby Unit.  I was (and still am!) lucky to be married to an incredibly supportive husband, who was strong enough to come with me on every step of the journey through psychosis and recovery.

So this is why we climbed: for all those women not so lucky.  The new mums whose illnesses sneak up on them, disguised as tiredness or baby blues or new mum anxiety.  The families living in areas without an MBU or specialist perinatal service.  The women who are on their own and have no partner to advocate for them and fight the illness with them.

There is so much still to fight for: to increase awareness and recognition of perinatal mental illness, so that no more women fall through the cracks.  To improve the coverage of perinatal services, and in particular MBUs, across the country.  To provide more support to single mums, partners and family members, so that families are not fighting this alone.  

Please join us on this mission.  Tweet using the hashtags #EveryonesBusiness #TogetherWeAreStronger and #PNDFamily.  Follow the perinatal mental health partnership on Twitter (@PMHP_UK) and look out for our awareness campaign starting soon.




Tuesday 26 May 2015

16 hours

Sixteen blessed hours.

This is how long The Boy will be attending nursery each week, starting from when we return to London in June.  Four afternoons a week, at the lovely little Montessori nursery just around the corner (literally) from our front door.  I can't wait.

I'm sure The Boy will take a little bit of getting used to the new arrangements.  He's been with me day and night since he was born, and although not overly clingy he has a keen sense of where I am and what I'm doing at all times!  He is not the biggest fan of other children either, although at least he's outgrown his pushing/hitting phase.  But I think this will be the making of us.  For him, a chance to stretch his independence and socialise and learn and grow.  For me, a chance to regain a sense of self (beyond motherhood) and to find new purpose.

I am open to suggestions, but already I have a few ideas on how to make use of this new window of opportunity:

- take Ukelele lessons (I was given a Ukelele as a birthday present many years ago but have shamefully never learned to play it)
- get fit, maybe even take an exercise class.  I've heard there's this new thing called "Zumba"... :)
- volunteer every Monday at the pop-up mental health cafe up the road.  Maybe help out cooking/serving, or even getting involved in the organisational side of things.  I see this as work experience for me and my own pop-up plans!
- finish what I started with the clinical psychologist and have some more sessions working on my psychosis memories and fears.
- find an actual paying job.  Ideally in a coffee shop, somewhere friendly and local.
- work on my writing.  Maybe take a night class, turn my very fledgling ideas into some sort of book.
- improve my italian, for the umpteenth time of trying.  Join an Italian language group, or find a tutor.

Ok so maybe these 16 hours will be filled up in no time.  And I still need to leave room for drinking coffee, meeting up with childless friends in baby-unfriendly places, daydreaming, wasting time on my iPad without having it turned to blasted Peppa Pig at every opportunity...

Wednesday 20 May 2015

Tips for anyone visiting an MBU

I posted these during #PNDHour tonight, but thought I'd share here too:

Here's some tips for people visiting friends and family in an MBU.  Psychiatric hospitals can be scary, forbidding, places.  But your visit is a chance to inject some normality, and can really help a mum's recovery.

- Bring healthy, fresh food! Anything from M&S works
- Make yourself at home, however weird it all seems 
- Help with things like bathing baby, especially if mum can't do it alone 
- Bring news from home, especially happy news
- Bring clean clothes for both her & baby
- Take them both for walk around garden
- Take some nice photos of the pair of them - they will appreciate these like gold dust later!

Inside a Mother & Baby Unit


Tonight's "#PNDhour" is all about Mother and Baby Units (MBUs).  So I thought I would jot down some reflections on my time in one.  MBUs are acute psychiatric inpatient wards for women who are either pregnant or up to 12 months post partum.  The majority of patients have acute and severe depression and/or anxiety, or postpartum psychosis.  But there are also (in my experience) some who are there on dreaded "parenting assessments", or those who may have learning difficulties or social problems.  There are around two dozen MBUs dotted around the country (this is not quite enough, but we are lucky in comparison with the USA, which has only one or two!).  They tend to be located within large psychiatric hospitals, and are led by a specialist consultant psychiatrist, a ward manager, mental health nurses, healthcare assistants and nursery nurses.

I was an inpatient, along with my newborn son, from the 19th November 2012 to the 31st January 2013, at the Channi Kumar MBU at the Bethlem Royal Hospital. The hospital is run by the South London and Maudsley NHS mental health trust.  I was a "voluntary" patient, technically - but it was made very clear to my family, who had brought me to A&E just two days after arriving home from the maternity ward, that I would be sectioned otherwise.  I would also have been sectioned if at any point I had tried to leave.  

So, yes, it was a "secure" place.  There were no door handles or hooks.  The  duvets were rubber and the bedroom doors had windows.  On arrival, these were all the first things I noticed, and it only made me feel more paranoid and scared.

Looking back, of course, I see the reason behind all the design features.  And I know the staff there made it as homely and as cheerful as possible.  There were 16 bedrooms, three shower rooms, a dining area (we had no access to the kitchen) and a nursery, which also had a (locked) milk room and a baby sleeping area.  I was given a tour on the night I arrived, but I was so exhausted and out of my mind I didn't take it in.  My husband left the pair of us that night completely distraught.  This wasn't where we were supposed to be.  The Boy had a beautiful nursery all ready and waiting for him back home: expensive mobile, hand knitted blankets, rows and rows of babygros and sleep suits all washed and ironed and neatly folded.  Now he was whisked off to the MBU nursery, to be cared for that night (and, it turned out, many many nights subsequently) by strangers.

The other ladies I met gradually over the course of my stay (keep in mind for at least the first 3 weeks I was "The Crazy One").  We came from all walks of life (a cliche but true!) but shared a very personal and intimate experience.  We bonded over Occupational Therapy, feeding tips, explosive poo's and all the other new mum topics of conversation.  The staff too came to be important figures in my restricted life as an inpatient.  They were, for the most part, incredibly kind and patient.  They all shared duties, so you were as likely to be under one-to-one nursing from a nursery nurse than a RMN.  And similarly the mental health nurses were all dab hands at feeding and changing newborns.

And what of my illness?  I was admitted with suspected postpartum psychosis. Very quickly it became clear the psychosis was getting much worse.  But I was in a safe place.  My hallucinations raged and raged, as I fought my sleep deprived mind, not to mention a lethal urinary sepsis.  The staff had seen it all before, which was some comfort to my frightened family who thought they were losing me forever.  

My psychosis loved the MBU.  Paranoid?  That strange man (a student on work experience) is following you and monitoring your every move.  Confused over names and faces?  We will introduce you to dozens of new people all with strange names and confusing job titles.  Think someone has taken your baby? We will have a constant stream of crying infants being carried up and down the corridor.  Hallucinations about suffocating?  We will keep you in a small bedroom.  It was an easy place for the psychotic mind to wander.

But I was safe.  For the first few weeks, when my illness was at its worst, I was under one-to-one care.  That meant I had a member of staff with me at all times, 24 hours a day.  The Boy was, at this point, primarily cared for in the nursery.  But I was always encouraged to spend time with him and to do as much of the practical care as possible.  I was so unsure of myself, I assumed everyone there could look after him much better than I could.  It was a sign of my recovery when I started to prefer doing everything myself and taking proper charge of him.

Soon enough, the time came for our gradual discharge.  What started as a precious few hours home leave on Christmas Day turned into days and weeks of leave until I was happily discharged into the care of my GP and a perinatal Community Psychiatric Nurse.  We also had fantastic follow-up care from a specialist Health Visitor, who made a lot of time for us and made sure my anxieties were allayed. 

 

I look back on our MBU time with a mixture of emotions.  Certainly some of the most horrific, frightening, catastrophic memories were from that place.  But it also gave me the strength to heal and allow me to become the mum I am now.  I am truly grateful to every single member of staff there (and all the fellow patients) who helped me and my son on our way.  I campaign now for more access to MBUs.  I am also a patient representative for the Royal College of Psychiatrists' inspection and accreditation programme