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