Saturday, 20 February 2016

My Baby, Psychosis and Me

Like many others involved in the campaign to raise awareness of, and improve services for, postpartum psychosis and other perinatal mental illnesses - I tuned in to BBC One's "My Baby, Psychosis and Me" earlier this week.  The documentary was aired as part of the BBC's #InTheMind season, and achieved both impressive viewing figures (for being on so late) and astonishing viewer reactions.  I gathered just a selection of the Twitter response to the programme in this Storify: 

A few days later, I wish to record some of my own thoughts on it all.  Before I begin I declare the following interests (baggage?):
1) I am a huge fan of Dr Alain Gregoire (the consultant in charge of the Winchester MBU, where the documentary was filmed) and his whole team.
2) Like the two women featured, Hannah and Jenny, I survived PP through being hospitalised for a significant length of time and medicated using powerful antipsychotic drugs.  I am hugely grateful to Psychiatry and the allied professions.

Ok, with that out of the way, let's begin our analysis...

We are introduced to Hannah and Jenny with no pleasantries.  They are both acutely unwell and in desperate need of a Mother and Baby Unit bed.  There were rumblings from some quarters of the audience about not knowing enough of the women's backgrounds, their history, their psychology.  But I think the filmmaker's approach in this case was to mirror reality: in a psychiatric emergency there is no opportunity for lengthy introductions or even so much as a how-do-you-do.  I liked the way the women came into the film: at the start they were their illness.  The psychosis in each case had largely consumed them, and it was the job of Dr Gregoire to find them again.

At times the film was almost unbearably sad.  It was during those times I, personally, retreated to the relative safety of Twitter and took a "social media management" approach to viewing the show.  My husband (who was in London, while I was visiting my family in Scotland) texted me to say how he thought I was "more of a Hannah psychosis than a Jenny psychosis".  I think he may be right.  I found Jenny's illness fascinating (the links to her bipolar, the ebb and flow of her mania, her paranoia)... But it was in Hannah that I really recognised myself: the sheer desperation, the terror, the restlessness, the crippling anxiety and self-doubt.  Watching Hannah in this state made me want to reach into my television and hold her tight and whisper intently into her ear: you will be ok.  You will get out of here.  You are a brilliant mum.  Hold on.  Hold on.  Hold on.

One thing the cameras didn't quite manage to convey (and perhaps this was deliberate) were the actual hallucinations.  Seeing things that are not there, hearing voices, experiencing the world completely differently from those around you, that is the nub of psychosis and the truly petrifying element of the disease.  I can only imagine that in those moments the cameraman was perhaps shepherded away.   In my own case, when I was "floridly psychotic" (how I love that term!), the other patients and any visitors to the ward would be ushered away to the safety of the communal nursery where the heavy door would clunk shut and a member of staff be on guard until it was safe for them all to come back out.

The cameras didn't capture these moments, but I'm sure they were experienced by Jenny and Hannah nonetheless.  And allowing a film crew to capture even just the recovery from this absolute Hell is a testament to their strength and courage.  We viewers were privileged to see ward round discussions (an absolute insight to the staff's continual balancing act of risk and recovery), the side effects and treatment effects of various medications, and even Hannah's experience of Electro-Convulsive Therapy (ECT).

I had seen ECT before but only in movies (remember Requiem For A Dream?).  Seeing it performed on Hannah "in real life" was gut wrenching and shocking.  But it worked.  And I kept thinking only how brave and determined she was: willing to try anything in order to just get better and be there for her daughter.  She wanted to die so much - and yet she desperately wanted her daughter to grow up with a mummy.  It was true incredible to watch.  And it seemed to work!

There have been a few comments online about how medicalised the programme was, with its focus on medication and ECT.  Yes, there was a lot of psychiatry on show.  But, again, I think this is realistic: postpartum psychosis is a psychiatric emergency.  There is a huge amount for psychology and other types of complementing therapy to do - but only after the PP is under control.  I personally would have loved a second part of the documentary, which went on to show the role of clinical psychologists, psychotherapists, family therapists, peer supporters, art therapists, occupational therapists and so on. But there was only an hour and given this was a documentary about the experience of PP it seems right that the focus was on psychiatry.  And what a psychiatrist!  I think even the most skeptical anti-psychiatry voices were won over by Dr Gregoire.
He explains his considered thoughts on mental illness and the brain so eloquently.  If even just a tenth of Dr Gregoire's compassion and understanding could be captured and inserted into every single health care professional we would go a long way to treating mental illness properly.  To achieving that "parity of esteem" our current government loves to speak about.

And I wish everyone could listen to Jenny's husband Henry as he speaks of his wife - how funny, how kind, how caring she is.  All of which is at first hidden by her illness.  I think Dr Gregoire and his staff "get it".

I was lucky to have just spent a day at the Winchester MBU where I witnessed first-hand how therapeutic the whole environment is.  Without compromising safety (always a huge priority in any acute mental illness ward) the staff are all trained and guided to be therapeutic at all times.  Every interaction is an opportunity for them, from taking a patient for a walk to the shops to helping them with baby's sleep routine at night.  The patients are encouraged to cook meals together (with the help of their very popular young Occupational Therapist), to take part in gardening projects, to do lots of messy play and crafting activities (with and without the babies).  None of this was captured in the documentary - it wasn't the focus - but I do wish to reassure any viewers who might be left with the impression that all the patients were treated with were pharmaceuticals.

I will leave it at that.  I'm off to watch it again on iplayer (still available here: ).  I want to watch it alone, with my smartphone switched off, and just let it all sink in properly.  

Saturday, 13 February 2016

Service user or service provider?

Over the last year or two I have forged a busy (if hardly lucrative) career in having been a former mental patient.  It's called being a "service user voice" or "patient representative".  I have attended workshops, spoken at conferences, commented on service specifications and care pathways, and reviewed services.  The health care professionals and managers involved are always keen to engage with us, but I'm not sure how meaningful it all is in practice.  I still read the same jargon and buzz phrases, week in week out:
Collaborative care.
Integrated pathways.
Ad infinitum.

As a result, I'm reaching the natural end of my contribution to perinatal mental health services - as a patient or service user. But I still want to make a difference. I genuinely want to transform the way perinatal mental health services are delivered.  I want to understand how this is done now, and how we can make it better.  And I want to help individual women and families along the way. 

In my personal life, we are coming to terms with our inability to have another child.  And I am thinking seriously about what to do with myself (besides the novel writing and MHFA training!) once The Boy starts school in September 2017.

Perhaps I am madder than I think, because I am now seriously considering a new career, at the advanced age of 35.

I am looking into the possibility of retraining as a mental health nurse, and starting a career in the NHS.  I have two degrees already (if you want my full CV: MA(Hons) Economics & Politics 2002, and MSc Economics 2005), so apparently I could even join an accelerated postgraduate entry programme (the PGDip in nursing with registration, mental health branch).

But in order to be accepted, I need to show almost 600 hours of "accredited prior learning and experience".  See, for example:

I have built up some relevant experience through all the patient rep work mentioned above, as well as the peer supporting I have done and Mental Health First Aid training.  But I need much, much more.

Can you or your organisation help?

I'm looking for flexible (due to childcare constraints) work experience placements in or around London, in mental health care settings (primary, secondary or tertiary; statutory services or third sector; traditional or alternative). 

In return you would get the services of a very enthusiastic and committed work experience student who has plenty of "lived experience".  I also have a full DBS, MHFA training and some specialist Perinatal MH training too.  I'm looking to do as much work experience as I can in the next two months, before our family goes away on secondment.  However my university application is not due to be submitted until June 2017.

If you would like to discuss please do leave a comment here, or message me on Twitter (@KatGrant30). Thanks!

Monday, 8 February 2016

In praise of "Woman's Hour"

My father-in-law is a fan.

Prime ministers are held in its thrall.

It provides companionship to thousands.

And as for me? It has schooled me on everything from sex and relationships, to child refugees, to work-life balancing, to the lives of tribal women around the world, to forgotten female scientists, to best lemon drizzle cake recipes.

The forty-five minute 10am slot on BBC Radio 4 is a fixture in my podcast library.  Having recently taken up (slow!) jogging, I am an avid listener.  Even while puffing away around the local park I am at once calmed and intrigued by Jenni Murray, Jane Garvey and their guests. 

It's hard to pin-point the attraction of the programme.  I like to think I'm a modern sort of woman, who's had a busy career and identifies as a feminist.  But I also love to bake, worry constantly about my parenting skills or the state of my marriage, and love to hear interviews with women leading interesting and unusual lives.

I would be beating down the door of BBC Broadcasting House, if ever they cancelled it.  But that does not look likely.  In fact, the Powers That Be have recently commissioned the superlative Lauren Laverne to host a "Late Night Woman's Hour" - like Jenni Murray with added sex chat and swearing.

Recent discussions have included "taboo subjects" like the menopause, and whether the idea of women "Having It All" is a myth dreamed up by advertising executives.  

It is quietly, politely, subversive.

Politicians understand its reach and importance (especially within the key pensioner cohort).   It does not present any party political bias (many assume it is "small c" conservative, but I see little evidence of this).  It simply holds its interviewees to proper account. Be they researchers presenting a new thesis on the cause of cervical cancer, a cabinet minister answering questions on departmental spending priorities, or a novelist explaining their inspiration for their new controversial book. 

This morning the Woman's Hour team tackled the issue of breastfeeding: why is it so hard for some mothers, and so easy for others?  What advice and support can help?  How long should babies be breast fed for, and in what situations might bottle feeding be a better option?  Among my "mum friends" (both in real life, and on social media) this is a hugely divisive issue.   For example, I strongly believe that the "Breast Is Best" message pushed onto me by the NCT and others throughout pregnancy was a contributory factor in my postpartum psychosis.  I sacrificed everything - my sleep, my well being, my peace of mind and finally my sanity - on the breastfeeding sacrificial altar.

It felt good to write in to Woman's Hour with a short synopsis of my experience.  I had hoped they might read it out on air, and that my words could help other mums listening in.  I know my story would be in safe hands with the Woman's Hour team.  They always take care to present all sides of any debate.  They give practical, sign-posting, advice and information.  This morning was no different.

So, if you have never tuned in or downloaded their podcast, please give them a go.  I promise at the least you will be mildly diverted. And at best it could be a real eye-opener.

Thursday, 4 February 2016

Secondary infertility

Or - the post I hoped I'd never have to write.

The infertility charity RESOLVE defines it thus:
"Secondary infertility is defined as the inability to become pregnant, or to carry a pregnancy to term, following the birth of one or more biological children. The birth of the first child does not involve any assisted reproductive technologies or fertility medications."

It doesn't seem to be talked of as much as primary infertility, or the decision to remain child free.  You have a biological, naturally-conceived child, so how can you say you're infertile?

Well, yes, on the face of it I don't exactly look infertile, running around after my three year old clutching baby wipes and snacks.  But infertility has been in my life ever since we started to try for another child two and a half years ago.  And now this merry dance is over: my ovaries simply don't have any eggs left in them.  Elvis has left the building.

We are left to grieve.  To wonder Why? To blame ourselves and each other.  To be angry at the doctors for giving us so many promises and false hope.  To laugh at our younger, contraceptively-minded, selves.  To hold our son tight and tell him sorry, so sorry, oh how sorry we are that we can't give him a brother or sister.

Since I last wrote about our longing for "Number Two" we did indeed decide to give the fertility clinics a shot.  We naively thought our odds were good, given how awesome our kid is and how compatible our gametes clearly are.  A few false starts later and we finally got down to the IVF business a few weeks ago.  From our first follicle monitoring scan I knew we were in trouble.  The numbers did not bode well: two, possibly three, developing follicles in the right ovary and none visible in the left.  Ok, perhaps they are just slow to develop?  No, by the time the consultant decided to do the collection we were still talking about a maximum of three follicles.

As I learnt to my bitter disappointment today, follicles don't always mean eggs.  They couldn't find a single one, and they aspirated every last inch of my two ovaries.

I don't want to put anyone off having IVF treatment.  The clinic could have handled things better, but I am glad we gave it one last shot, and at least I can lay it all to rest and accept that another biological child is not in our future.

We are going to take our time to regroup, to recover.  And then we will pick ourselves up and count our blessings and look to the future.  Who knows? That future may even involve a child already born, who could be looking for an adoptive family in years to come.