Dear Dr Dening and Dr Shapleske,
I remain very distressed and angry about the failure of CPFT to offer
me adequate support during the three and a half years I spent as a
client of your services. My most specific disappointment is with the
eating disorder service. Below is the text of a contribution I made to
the Guardian readers' panel on Mental Health Services. My contribution
was published today, but constraints of space mean that it was edited
into a much milder piece that fails sufficiently to convey my anger
about CPFT. So I wish you to read both the published piece
(http://www.guardian.co.uk/
and my original writing.
[Submission to the Guardian]
My anorexia has been with me since 1989. I was admitted to hospital
that November just after my 11th birthday, having given up eating as
part of a part physical, part psychological illness that had prevented
me from going to school for several months. While anorexia nervosa was
mentioned as a possible diagnosis, I was treated mainly for M.E., and
left with lingering eating difficulties that remained part of the way
in which I experienced every day as I progressed through school. But
it was after my A Levels that the anorexia manifested itself in a way
that could no longer be ignored. Instead of starting university after
my gap year, I was admitted to a specialist NHS eating disorder unit.
This multi-disciplinary team in Birmingham were responsible for my
medical care for most of the next nine years, even when I went away to
study at Cambridge, first as an undergraduate and then during my MPhil
year. By this time, I'd had 3 inpatient admissions and when, in the
second term of my PhD, I had to enter the hospital for a 4th, the
consultant suggested that the help that they were able to give me
during university holidays was no longer sufficient and he would be
happier referring me to the Cambridgeshire services so that I could
get more regular support from specialist professionals.
Thus began three and a half years of living alone, working for a PhD
and suffering very severely from my anorexia because Cambs EDS were
not willing to treat me, the general psychiatry teams had no resources
to treat people with anorexia and my GP could only offer help from
within the limitations of her surgery: 10-20 minutes every 3 weeks or
so. For most of 2009 and 2010, I was desperate for help, yet pushed
from one professional to another, rejected again and again by the EDS
who were (in the words of one counsellor I saw) 'prejudiced by the
amount of treatment received in Birmingham, none of which has ever
worked'. The same counsellor called me 'an anorexic with no hope of
getting better' during one of our meetings back in early 2008 when the
Cambs service had picked up the referral from my previous doctor.
In December last year, I was on the verge of [giving up completely]. I had no
hope of getting better (it's amazing how labels people give to you can
stick in your head...), no hope that anyone would even see me to talk,
and no hope that this misery would end unless I ended it myself. The
only thing that stopped me was the thought of my dog finding me and
being afraid and alone.
A week later, I had an appointment with my old consultant in
Birmingham and was admitted to the ED unit here on 30th December.
Unfortunately I was so ill by this stage that [edited because the whole world doesn't need to know the details of that horrible time].
Today is June 1st. Since those dark days in December, I became a
voluntary patient at the hospital when my section was eventually
lifted, attended my PhD graduation (and forced the medics to change my
title to Dr on my notes!) and today got the keys to a flat where my
dog and I can live when I'm discharged later this month.
I'd heard the words 'postcode lottery' many times before 2007; it only
made sense to me when I had to live in Cambridge for my work but was
unable to gain any support there. Literally having to move 90 miles to
access treatment has been a massive wrench. I'm much better now and
hope that I can maintain this progress as an outpatient, but having
moved from Cambridge, I am faced with very few prospects for
employment. It turns out that doctorates in medieval literature are
not a huge draw in the current job market. I'd believed that I'd be as
free as my contemporaries to apply for jobs in other towns and cities
but the past four years have convinced me that, until mental health
provision is universally good, I have to stay here.
2 comments:
I am one of your close friends so I know all about your long struggle, but you write so beautifully and honestly, I'm glad other people are finally getting to read what you write.
Lindy,
As the father of Averil who died tragically whilst in th care of NCEDS and CPFT, I read your blog with great sadness and also understanding of the lack of care that you received from Dr. Jane Shapleske and her team.
Even Averil's cleaner at Unviersity did more to help Averil stay alive than NCEDS and Dr. Shapleske whilst she was at UEA.
Sadly Aidan Thomas and those at CPFT continue to suggest that Averil's care was satisfcatory, even though her death was completely preventable.
See
http://www.averilhart.com/blog/2014/7/9/to-those-responsible-for-the-death-of-averil-hart
Thinking of you and hoping that life is treating you well.
Nic
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