At 2.47am two weeks ago I received a call from my daughter to let me know that she has been Sectioned under the Mental Health Act (again) and has been restrained (held down) twice been injected in her bottom. Nobody had told me. Despite me having been her main carer at home throughout her childhood, since she turned 18 she is an 'adult' so there is no obligation to inform me. 'Sections' are legal powers used by doctors under the Mental Health Act; they effectively deny your freedom and suspend any rights to free-will and self-determination, like being incarcerated. She isn't mentally ill.
My nineteen
year old daughter has been in Acute Psychiatric and ‘Triage’ Wards for the last
eight weeks. Eight weeks - think about how long this is, what you have done during that time. This might seem fine if she were acutely mentally
ill. She isn’t. She has Learning Disability. Learning Disability is something very
different from an acute mental illness. According to diagnoses (there have been about ten different ones during her life) she
has some form of brain damage/limitation, her cognitive skills are poor, she tells me
that the food that I get out of the freezer is past its sell by date so she can’t
eat it, she sees the date on the package and she doesn’t understand that it was
frozen and is ok, she struggles a bit with the concept of time – this is a
cognitive difficulty, it is not an illness. She wakes having wet herself. She argues with me that she "DOESN'T NEED A TICKET! I'VE GOT A YOUNG PERSON'S RAILCARD!". She doesn't cook or clean; she walks around with her purse on top of her handbag. She is quite child like in some respects, she is quite 'normal' in others,
she has a limited IQ, her mental age is about 12/13 years old. She is capable of reading this and understanding it, though I am in no hurry to show her it. So this is a child. My child. She is held in secure conditions with adults.
This is not
the first time that she has had an extended stay in such an institution in the
last year. It is the THIRD. She has been held like this for a total of about 4 and a half months over the last year. So much time. I struggle with this.
She becomes
institutionalised by this. She learns
new behaviours from seriously ill people and she mimics them, and then these are confirmed by the place that she is in, after
all if she is in an acute mental health ward then she must be acutely mentally
ill. No doubt if doctors placed me in a
cancer ward I would believe that I have cancer.
One day she
calls me to tell me that she thinks the Triage Ward is ‘nice’, that she quite
likes it. She doesn’t always see it this
way. Last November she asked me to come
and get her and she came to live with me for 3 months. She knows that I don’t
think that she should ever be in mental hospital in the first place.
She is a lovely girl. She was dealt some rough cards from birth. She has to cope with those cards in every waking moment; she wants to be 'normal', she wants to have a successful life as advertised on the TV. She is lovely. At other times she can be very stubborn.
I went to
get to get her from the ward in Lewisham that she had been in for a relatively short stay of 4 weeks last November. I found her in a secure ward, a place to keep people in, to
make sure that they can’t get out, for their own protection, and in some cases
for our protection. A place containing heroin
and crack addicts who have been ‘brought in’ from the street where some
would be clinging to survival, some addicts, some psychotics, all people with
serious mental health illness. I have no attitude or judgement about these people, they are ill, it is not their fault. My daughter is not ill. It is a place with people screaming and shouting,
desperate people in desperate times. There are rooms, like cells, sparsely furnished, the windows are plastic, thick secure plastic, not glass, scratched and scratched and scratched plastic, each room has an observation hatch and a lock, a corridor with people milling
about demanding attention, bawling for attention, aggressive people, “DOCTOR!
DOCTOR!” one shouts at me “when am I gonna get my fucking….” I couldn’t tell
what the last words were. The
cleanliness and soothing music of One Flew Over the Cuckoo’s Nest are a long
way from this place.
My daughter
has been assaulted three times.
She is not acutely mentally ill, she has Learning Disability, she has a low IQ and she is unhappy,
depressed with her lot and she wants help. I recognise that depression is a mental 'illness', I make the distinction about 'acute'. When she is unhappy she will stop eating to try to achieve things, often to force services to
take her seriously. There has been years of this, education systems spitting her out, and now as an 'adult' the social services doing the same. She has learned that
this starvation will get a reaction. The reaction from an over-stretched NHS (in the absence of intervention from Social Services) is to place her in an acute mental health ward.
When there she learns new behaviours from people with mental health
problems that she doesn’t have. The
doctors and nurses know this. They know
she shouldn't be there, they say so.
She is a modern day Billy Bobbit.
There is a
control room where the staff answer phones and manage medication. This room is inaccessible to the patients and
to me. When a patient lays on the floor
seemingly passed out it takes me some time to get the attention of the staff –
they eventually come out of the sealed room with the big window to tell me that
this person does this often and that they are sure that she is ok; they know
this without examination. I am
frightened and concerned. My daughter is
agitated. She swears and shouts, she
joins in with the rest. She learns that
this is the way. She learns a new
patois, she doesn’t sound like my daughter does when she is at home.
My daughter
is not mentally ill. She should not be
in this place. At a case conference I
say if she is not out of here tomorrow I will write to my MP – "that might help" says
one of the professionals. They tell us that Social Services have refused to attend the meeting, so what can the NHS staff do? the only thing they have is the Acute Mental Health Ward. No-one understands why the Social Services are not present, there is no explanation,
My daughter
sees three alternatives. She could live
with me, she knows that I want this, that I am totally flexible around her
needs, that she can come into work with me and slowly learn how to be
independent. Fortunately I am the Director of a small voluntary sector organisation, I can make changes and my staff are supportive and
loving, they like my daughter. She comes in to work with me and we give her jobs to do, she is useful. She has a good life with me and she knows it, she likes me and she likes what she can do when with me, she calls me 'relaxed', we joke that the dog is the doctor (Dr Reggie) and when I need to get through to her I use the dog to 'speak' to her. On the good curve she is lovely....
But. She
doesn’t want this; I live in the north of England and she says that this is
“too far away” from the meagre handful of friends she has. Very naturally she is eager to live free and fly like many other teenagers. She has lived with me,
it has been successful, but when she went to visit her mother eight weeks ago
she declared that she was unhappy and that she wouldn’t eat, she wanted her mother to offer unconditional support and a nest from which she might see her friends, she wanted to extend her stay with her mother. Within four days she was taken to an A&E (as not eating and dehydrated) and thence to psychiatry. When my daughter had similar behaviours at christmas (again when with me) the local NHS staff in Cumbria did everything they could to keep her out of hospital, a robust position that took a great deal of determination from us all; this took care and patience over a sustained period of two weeks (christmas was pretty crap), but we had daily visits from the crisis team and eventually she came round. It was hard, it took some effort. The alternative would be to deliver her to A&E and allow her to be in a place that isn't good for her. We started to get Social Services in Cumbria involved and they were very helpful quickly seeing us and even more quickly allocating resources to her.
The second
alternative is that she lives with her mother.
Her mother is a very busy and careerist woman, has a very important (to her) career, can not or will not take time off work when our daughter ‘kicks
off’. When we were together as a family
it was always me who stopped working to be flexible around our daughters’ needs during the years that she slipped and slid through the education system. Schools couldn’t cope with her, they excluded
her repeatedly. I would send her off to
school and then wait for the phone to ring for me to come and get her, often
this would happen by 9.30. This went on for years. Her mother used to be annoyed with me that I chose not to work in order to be there for our daughter, "they only send her home because they know that you will be there for her", as if I were somehow complicit in a bad thing. They would have thrown her out permanently much sooner if they hadn't had the option of me taking her home; it was the school and me trying to work things through.
My daughter
now says that she knows that she can not live with her mother. She knows that her mother is too busy with
her career. This knowledge devastates her, she rants about it daily.
My daughter has also
complained about her mother’s drug use and has had conflicts with her over this. Her mother’s new partner calls himself a
‘dope head’. He has been given a key to
the house, my daughter complains about this but is told that it is not up to
her who is in the house. When my
daughter stayed with her mother for a couple of months but eventually said that she felt really unhappy and on the brink of breakdown she was left at home alone while her mother went
to work. She would phone me and ask me to intervene, I would text her mother to try to get her to go home and would receive no reply. The crisis around this conflict
led to the second of my daughter’s incarcerations in secure psychiatric ward. When subsequently asked to guarantee that she wouldn't leave her daughter at home alone she refused, when asked about the drugs she said that "she wouldn't expose her daughter to risk". When I raise my concerns about this Lewisham Social Services said that "consideration for safeguarding procedure was looked at. However....there is not enough evidence to say that she is at risk". So, leaving a Learning Disabled young adult at home alone when she is declaring herself near to breakdown is not a 'risk'.
Despite it being an utterly inappropriate place for her to be, somehow Social Services also do not believe that placing someone who is very vulnerable with Learning Disability into an Acute Mental Health ward is 'a risk'.
Her mother has repeated opportunities to get her home when her daughter asks for her to come and get her and take her home, but refuses to be flexible, even going as far as emailing the staff opposing her discharge from hospital (remember she isn't actually ill) unless Social Services put money up for her to pay for what amounts to child-care while she goes to work. If Social Services won't pay for it then she can stay in hospital is the approach. (This is not something she can't pay for herself as a temporary measure - she earns very well, about £80k, as a senior manager in the civil service and has been keeping her hands on all of the £4000 per annum Disability Living Allowance that she has been receiving for the past three years - including when our daughter isn't living with her.)
The third
alternative is that my daughter lives in some kind of supported
accommodation. She is fixated by this
idea. I believe that she thinks that it
will be some kind of Tracey Beaker-land for young adults. She is constantly told that this will be "looked into" despite me warning that she takes this as a promise of delivery. Before a meeting I quickly and privately tell the psychologist (who doesn't really know her) that it's very dangerous and just encourages her to keep up her hunger strike if this 'carrot' of supported living is held up as a possibility; twenty minutes later he states in front of my daughter that he has seen such provision....so she believes that it is achievable – if she continues to
threaten to not eat and drink and all the other behaviours that she is learning (talking about suicide and ‘voices in her head’ are new ones). If she keeps it up she will get to Tracey
Beaker-land. She used to love Tracey
Beaker when she was young.
They tell her she has an 'eating disorder'. Two different psychiatrists tell her she has an 'eating disorder'. So now when I try to get her to be positive and join in with meals she says "I can't dad...you don't understand...I have an eating disorder". How stupid (not her, the psychiatrists). Have you not listened? She adopts 'conditions' like badges and once adopted they are so hard to remove from her portfolio! Others, like me, (and her Psychiatric Nurse in Cumbria) do not believe her to fit any eating disorder profile at all. Trying to influence people through refusing to eat is an entirely different thing to an eating disorder. One is a plea for help, the other is compulsive. Anyway, even if you do believe her to have an eating disorder on what planet are you on to say that to her?! Yet another professional dropping a bombshell then moving on to the next patient. This 'eating disorder' diagnosis will be something that she carries for the rest of her life, she will obsessively cling to it. There have been too many professionals flitting in and out. I think I have spoken to about 7 psychiatrists in the past 5 months, each of whom has been 'her doctor' depending on where she is; she rattles around the pin board table.
The local authorities argue over responsibility. Actually, to be fair, only one argues that they have no responsibility - Lewisham. Because my daughter has been with me in Cumbria for a sustained period Lewisham say that she is Cumbria's responsibility - despite her being in a hospital in Lewisham (and claiming that she lives at her mother's address) and therefore asking that Lewisham provide some kind of supported living. We are told at the case meeting in Lewisham that the local authority have refused to attend, this despite only four months previously there having been an agreement made to 'joint care' my daughter in recognition that she is sometimes with me in Cumbria and sometimes in Lewisham. Cumbria to their credit say they will put a care package (money) in place for four weeks for when my daughter is discharged from hospital "so that she doesn't fall through the cracks"; Lewisham treat this as evidence that she is Cumbria's case and refuse to take action, so Cumbria withdraw the support. Only when the desperate doctors on the Psychiatric Ward manage to get the Director of the Lewisham NHS Trust to raise the matter with the Director of Social Services do Lewisham relent and promise to undertake an 'assessment'. They don't need to do an assessment, they had done so just months ago when they had agreed to joint care. As a stalling tactic it works, effectively she ends up being discharged without any support in place.
As ever, there is no support in place today, just me.
DISCHARGE!
The discharge to me is an absolute relief, finally she is out of the totally inappropriate circumstances of an acute psychiatric ward. The staff are so relieved when I come to get her, almost ecstatic. It comes about because she finally gives in to her need for emotional sustenance, she finally asks me to come and get her. She calls me and asks me to come and get her and I am on the next train. For eight weeks she has been refusing this, in the simple and brain impaired hope that Lewisham will do something if only she harms herself enough. She has been hoping that her mother might relent and have her come 'home'. She has been refusing to come to me because she believes that by doing so Lewisham will once again close the book on her (she may be right). She has been using the only vocabulary she has to try to negotiate - to starve herself. Finally she relents and I have her in Cumbria within 10 hours of the call.
This week she has sometimes been fine, coming out sometimes, doing normal things. I wouldn't say that she is eating normally, but she is eating something sometimes. We have had positive visits from Cumbria NHS and Social Services. Every day is a challenge. For the last two days she has refused to get out of bed, eat, drink, take medication. It is very stressful. Will I be able to work this week? Probably not.
There has been no delivery, just assessment. In Lewisham's case the latest assessment took place over two weeks ago, Cumbria are still awaiting it, but the verbal news is that Lewisham have decided that my daughter isn't Learning Disabled at all - this is utter rubbish of course, it's just a way of avoiding responsibility and stalling providing any support. When I email Lewisham Social Services (twice) to ask how to complain they do not answer.
So there we are. This goes on and on and on. More and more damage is done.
I have decided to blog this publicly in the hope that recording this in public might get results for my daughter. I have had enough of seeing my daughter failed, seeing her damage herself and so helpless. I accept my own duty as a parent and my failings and I try every day to mitigate that. I admire most of the NHS staff who try very diligently to help despite their own lack of power to change 'the system' and I have no issue with the Cumbria Social Services who have responded so well.
Others are utter failures.
