She doesn't wash (herself)
She mostly refuses to change her clothes, including sleeping in them.
She never does her own laundry
She can't cook
She can not be trusted with her own finances (she is likely to give money away to buy friendships)
She hardly ever does any positive household chores
She refuses to take her medication regularly
She is oppositional in pretty much everything eg "its time to go to bed now results in I am going to stay awake all night", "let's have something to eat results in I am not going to eat today", "let's go to....wherever.... = I am not going".
She is constantly abusive
Sunday, 24 May 2015
So now it is quiet
The outcome of the meeting was that M was discharged from hospital again. Fortunately the services in Cumbria had already put in place a plan to take her to a 'home' for people being discharged. If it had been in Lewisham she would have simply been discharged.
So now it is quiet, at least for a few days while M settles into this new institution. This means that I can have a few days off from the constancy of anxiety, the long days running around between places.
So now it is quiet, at least for a few days while M settles into this new institution. This means that I can have a few days off from the constancy of anxiety, the long days running around between places.
Wednesday, 20 May 2015
a new day
8.00am
I go downsatirs. M is there still wearing the clothes that she had on yesterday having point blank refused to get ready for bed last night.
Me "hiya" "lovely morning isn't it" "You have slept in your clothes again, you need to get ready to go to the meeting".
M RANT: "oh FUCK OFF, you don't fucking understand, you are a fucking piece of shit what do you care.....etc etc"
The abuse is picked up straight from where it was left off last night.
I go downsatirs. M is there still wearing the clothes that she had on yesterday having point blank refused to get ready for bed last night.
Me "hiya" "lovely morning isn't it" "You have slept in your clothes again, you need to get ready to go to the meeting".
M RANT: "oh FUCK OFF, you don't fucking understand, you are a fucking piece of shit what do you care.....etc etc"
The abuse is picked up straight from where it was left off last night.
Tuesday, 19 May 2015
eleven days later
Eleven days. Truth is there hasn't been a moment to write anything down. It is either work or M or just M all the time. Day to day things are done on the fly - shopping, paying bills, run, run. To the Social Services, to the hospital, to work, to the phone, run, run.
Phone call just now. "Hi Dad...they've just told me they are going to press charges against me".
She slapped a nurse apparently. This was several days ago but no-one thought it appropriate to talk to me, despite seeing me every day, so it comes as a shock. She has herself been restrained several times, face down on the floor, a bruise to her forehead and her legs (a proper bruise) while she is injected in her backside. She perceives this as violence towards her. She is very wound up, not saying she should slap anyone but maybe unsurprising in some ways that she has; she is sorry. She says that after the slap (followed by another restraint and injection) the nurse had said "now we are even".
Learning Disabled young adult in another Acute Psychiatric Ward - again. Mental age of a young child, emotionally unstable, medicated, anxious, depressed. Now to a police custody unit.
I come away from work and spend several hours first at the hospital arguing the toss about the letter that they have given to me to take to the police station which is short and states that M 'has capacity' (ie to be treated as an adult who has committed a crime), and then we go down to the police station where she is taken through security doors, down long corridors, out through a yard with high fences where I imagine many serious offenders have walked the same journey, through heavy security doors and finally to a large room with a raised central area and in front of the custody officer before being walked past cells and into an interview room where she is 'interviewed' under caution with the tape recorders rolling.
It is 'the procedure' the ward manager told me; is it appropriate? I had asked. I can see in her eyes that I am now the enemy for asking questions. Since the 'incident' she had made a lot of progress; now she is back to almost uncontrollable anxiety, taking to herself again, peaking and troughing in behaviour every two minutes from little girl to wild behaviours copied and learned from her environment in an Acute Psychiatric Unit (that everyone keeps saying she shouldn't be in....).
"Perhaps if you had raised these issues of capacity and her care in the past....", I cut her off pointing out that we have been engaged with services for most of M's life, raising issues and desperately asking for support while we received endless assessments and new diagnosis from the next set of professionals, but no real help. She moves onto a new subject without acknowledging what I have said.
Early in the interview under caution process where I am present as her 'adviser' M is asked whether she gives permission for her DNA to be taken for the PNC (Police National Computer). I point out that she doesn't have any clue as to what is being asked. Her behaviour is child like as she tries to grasp what is being talked about. The officer clutches the letter stating that 'she has capacity' throughout the questioning, he repeatedly re-reads it and the poor guy looks bewildered.
Phone call just now. "Hi Dad...they've just told me they are going to press charges against me".
She slapped a nurse apparently. This was several days ago but no-one thought it appropriate to talk to me, despite seeing me every day, so it comes as a shock. She has herself been restrained several times, face down on the floor, a bruise to her forehead and her legs (a proper bruise) while she is injected in her backside. She perceives this as violence towards her. She is very wound up, not saying she should slap anyone but maybe unsurprising in some ways that she has; she is sorry. She says that after the slap (followed by another restraint and injection) the nurse had said "now we are even".
Learning Disabled young adult in another Acute Psychiatric Ward - again. Mental age of a young child, emotionally unstable, medicated, anxious, depressed. Now to a police custody unit.
I come away from work and spend several hours first at the hospital arguing the toss about the letter that they have given to me to take to the police station which is short and states that M 'has capacity' (ie to be treated as an adult who has committed a crime), and then we go down to the police station where she is taken through security doors, down long corridors, out through a yard with high fences where I imagine many serious offenders have walked the same journey, through heavy security doors and finally to a large room with a raised central area and in front of the custody officer before being walked past cells and into an interview room where she is 'interviewed' under caution with the tape recorders rolling.
It is 'the procedure' the ward manager told me; is it appropriate? I had asked. I can see in her eyes that I am now the enemy for asking questions. Since the 'incident' she had made a lot of progress; now she is back to almost uncontrollable anxiety, taking to herself again, peaking and troughing in behaviour every two minutes from little girl to wild behaviours copied and learned from her environment in an Acute Psychiatric Unit (that everyone keeps saying she shouldn't be in....).
"Perhaps if you had raised these issues of capacity and her care in the past....", I cut her off pointing out that we have been engaged with services for most of M's life, raising issues and desperately asking for support while we received endless assessments and new diagnosis from the next set of professionals, but no real help. She moves onto a new subject without acknowledging what I have said.
Early in the interview under caution process where I am present as her 'adviser' M is asked whether she gives permission for her DNA to be taken for the PNC (Police National Computer). I point out that she doesn't have any clue as to what is being asked. Her behaviour is child like as she tries to grasp what is being talked about. The officer clutches the letter stating that 'she has capacity' throughout the questioning, he repeatedly re-reads it and the poor guy looks bewildered.
Wednesday, 6 May 2015
Continued
In yet another waiting room in a secure ward. M is in a state. Not sure if she will see me.
Tuesday, 5 May 2015
Arrested
So after a week-end of M being sometimes angry and very wound up and sometimes very happy and easy, me constantly trying to judge how to intervene, whether to intervene, what to say. This was a three day week-end due to a bank holiday - so a long one. I get out a bit on my bike, walk the dog for quiet time, sometimes she just needs time to calm down. She is so angry with her lot but so confused in what she says and what she wants making it so hard to give her what she needs. She says she wants support but then rejects it when she gets it.
In rooms next door she rants and rehearses arguments with people who are not here, shouting at them, repeating mantras of how she needed them to be there for her and not leave her in mental hospital, how she will tell everyone the truth about how she has been abused, how her mother is a druggy etc etc. These regular bouts of aggression are hard to bear, but then at other times she is sweet and easy, we laugh sometimes when I say who are you shouting at on your imaginary phone?! Sometimes a comment like that goes well, other times it is the red rag to the bull, knowing which is very difficult.
By bedtime last night she was back to lovely (partly due to me pretending to be a dog and crawling around on all fours barking and pretending to wee), smiles and "I love you dad...you are the last one that I should fall out with".
Today the Social Worker came to see her to tell her that she is making connections for M so that she can actually go and see what 'supported living' is on offer. No-one has ever shown her this before so it is great that the Cumbrian services are doing this so quickly. But it can't happen this week as someone is away on holiday, so M rejects this and rants and storms off swearing.
I express how difficult the week-end has been. M demonstrates the situation very well by ranting and screaming at me in front of the SW, calling me everything under the sun, how I am a terrible dad, how I never give her the support she needs etc. It starts to get you frayed at the edges to constantly be given this abuse, to be shouted at so much. M also rants at the SW who actually has been helpful and quickly put in place a 're-ablement' service which is people who come to visit M three times a week to help her learn independence skills like cooking, laundry etc. This has been put in place and quickly delivered in response to M's stated desire to live independently. I do privately express that M is a million miles from this sort of independence, but I am glad that something is there - it is an expression of M being taken seriously in her stated desires and I'm grateful for the support. When the re-enablers come usually M doesn't want to do anything with them, though on the Bank Holiday Monday (yesterday) one of them got her to have a bath at least, first in a week.
I leave and apparently M calms down. The SW arranges to come back later at 3pm when the CPN (Community Psychiatric Nurse) is also due to visit.
At 3pm the SW arrives. M is already wound up. She shouts and screams at first the SW and then CPN when he arrives shortly afterwards. This is all just ranty abuse about how none of you fucking people help me and a long list of historical examples of how she is always let down. She leaves the room from time to time and we have brief snatches of conversation between ourselves about how to manage the situation, what each service might be able to offer, how I need support. They see how difficult it is but we also agree that we need to keep her from an ultimately unhelpful outcome of a return to Psychiatric Ward, as the CPN says "it's a question of whether you can cope" as the Acute Psychiatric Ward is all that the NHS has. So I am caught between a rock and a hard place, I do need relief from the abusive behaviour and daily stress, but I don't want her back in the Psychiatric Ward.
M escalates. She gets to the level of throwing a chair at the SW and grabbing some scissors and behaving threateningly with them. The CPN to his huge credit goes into the kitchen with her while she is waving the scissors in his face and helps her to calm down. Later he talks to me about how she is always looking to see what effect her behaviour is having and how he knows that this is a signal of inner control rather than out of control behaviour. But at her heightened state accidents are very possible.
The support and engagement in Cumbria is human and real, especially in the light of the lack of it in Lewisham. It is a frustrating irony that M wants the support in Lewisham, but Cumbria NHS and Social Services do not see this as any reason to not engage with M, even though we all know she may 'up sticks' at any moment. I do feel supported here, and that everything is being done in a truly engaged way for M, though the limitations on provision are a frustration to us all. Having said that I receive texts and conversation from the services here, CPN SW and I have intelligent conversations about finding solutions, about recognising M's needs, these conversations and texts
SW and CPN decide to leave, and we talk about how I might leave too in order to allow her to calm down for a bit. Adrenalin takes 90 minutes to leave the system I am told, which is helpful to know and does fit the leave her alone for a while scenario that I have come to adopt.
As they are leaving M plays her trump card which is to pack her bag and announce that she is leaving 'to go to London'. We call her bluff. SW leaves, but CPN says he will watch in his car from a distance. She stands at the end of the lane for half an hour. I keep checking to see if she is still there, hopefully she will calm down. Fortunately I live in a small town, where she would go is pretty easy to predict.
She disappears. I drive around and find her. She tells me to go away, that she doesn't need me, that 'she is going to London'. She is so distressed, she is the child, but so full of her 'adulthood' that she will not comply with any pleading.
I can't let her wander around, and even less so can I let her get on a train to London and god knows where.
I go home and call the police and explain the situation. They quickly find her, near the station. They call me. By the time I get there, 10 minutes, they have arrested her due to her talking of suicide, they have the provision of a Section 136 detention to stop people from hurting themselves; this is not new to me.
She is taken to a hospital 30 miles away. There she will be assessed. I am sitting here waiting for my call to be returned from the new (to her) people that will be assessing her, they say that this may be as late as 2 o'clock in the morning. I need to speak to them to help them to understand what is going on with her, and as the police say - to make sure that they don't just open the doors and tell her she is free to go...to where. She is Learning Disabled, she has a low IQ, she is vulnerable.
The workers in the NHS, the police, the Social Services are not able to offer what they want to offer.
In rooms next door she rants and rehearses arguments with people who are not here, shouting at them, repeating mantras of how she needed them to be there for her and not leave her in mental hospital, how she will tell everyone the truth about how she has been abused, how her mother is a druggy etc etc. These regular bouts of aggression are hard to bear, but then at other times she is sweet and easy, we laugh sometimes when I say who are you shouting at on your imaginary phone?! Sometimes a comment like that goes well, other times it is the red rag to the bull, knowing which is very difficult.
By bedtime last night she was back to lovely (partly due to me pretending to be a dog and crawling around on all fours barking and pretending to wee), smiles and "I love you dad...you are the last one that I should fall out with".
Today the Social Worker came to see her to tell her that she is making connections for M so that she can actually go and see what 'supported living' is on offer. No-one has ever shown her this before so it is great that the Cumbrian services are doing this so quickly. But it can't happen this week as someone is away on holiday, so M rejects this and rants and storms off swearing.
I express how difficult the week-end has been. M demonstrates the situation very well by ranting and screaming at me in front of the SW, calling me everything under the sun, how I am a terrible dad, how I never give her the support she needs etc. It starts to get you frayed at the edges to constantly be given this abuse, to be shouted at so much. M also rants at the SW who actually has been helpful and quickly put in place a 're-ablement' service which is people who come to visit M three times a week to help her learn independence skills like cooking, laundry etc. This has been put in place and quickly delivered in response to M's stated desire to live independently. I do privately express that M is a million miles from this sort of independence, but I am glad that something is there - it is an expression of M being taken seriously in her stated desires and I'm grateful for the support. When the re-enablers come usually M doesn't want to do anything with them, though on the Bank Holiday Monday (yesterday) one of them got her to have a bath at least, first in a week.
I leave and apparently M calms down. The SW arranges to come back later at 3pm when the CPN (Community Psychiatric Nurse) is also due to visit.
At 3pm the SW arrives. M is already wound up. She shouts and screams at first the SW and then CPN when he arrives shortly afterwards. This is all just ranty abuse about how none of you fucking people help me and a long list of historical examples of how she is always let down. She leaves the room from time to time and we have brief snatches of conversation between ourselves about how to manage the situation, what each service might be able to offer, how I need support. They see how difficult it is but we also agree that we need to keep her from an ultimately unhelpful outcome of a return to Psychiatric Ward, as the CPN says "it's a question of whether you can cope" as the Acute Psychiatric Ward is all that the NHS has. So I am caught between a rock and a hard place, I do need relief from the abusive behaviour and daily stress, but I don't want her back in the Psychiatric Ward.
M escalates. She gets to the level of throwing a chair at the SW and grabbing some scissors and behaving threateningly with them. The CPN to his huge credit goes into the kitchen with her while she is waving the scissors in his face and helps her to calm down. Later he talks to me about how she is always looking to see what effect her behaviour is having and how he knows that this is a signal of inner control rather than out of control behaviour. But at her heightened state accidents are very possible.
The support and engagement in Cumbria is human and real, especially in the light of the lack of it in Lewisham. It is a frustrating irony that M wants the support in Lewisham, but Cumbria NHS and Social Services do not see this as any reason to not engage with M, even though we all know she may 'up sticks' at any moment. I do feel supported here, and that everything is being done in a truly engaged way for M, though the limitations on provision are a frustration to us all. Having said that I receive texts and conversation from the services here, CPN SW and I have intelligent conversations about finding solutions, about recognising M's needs, these conversations and texts
SW and CPN decide to leave, and we talk about how I might leave too in order to allow her to calm down for a bit. Adrenalin takes 90 minutes to leave the system I am told, which is helpful to know and does fit the leave her alone for a while scenario that I have come to adopt.
As they are leaving M plays her trump card which is to pack her bag and announce that she is leaving 'to go to London'. We call her bluff. SW leaves, but CPN says he will watch in his car from a distance. She stands at the end of the lane for half an hour. I keep checking to see if she is still there, hopefully she will calm down. Fortunately I live in a small town, where she would go is pretty easy to predict.
She disappears. I drive around and find her. She tells me to go away, that she doesn't need me, that 'she is going to London'. She is so distressed, she is the child, but so full of her 'adulthood' that she will not comply with any pleading.
I can't let her wander around, and even less so can I let her get on a train to London and god knows where.
I go home and call the police and explain the situation. They quickly find her, near the station. They call me. By the time I get there, 10 minutes, they have arrested her due to her talking of suicide, they have the provision of a Section 136 detention to stop people from hurting themselves; this is not new to me.
She is taken to a hospital 30 miles away. There she will be assessed. I am sitting here waiting for my call to be returned from the new (to her) people that will be assessing her, they say that this may be as late as 2 o'clock in the morning. I need to speak to them to help them to understand what is going on with her, and as the police say - to make sure that they don't just open the doors and tell her she is free to go...to where. She is Learning Disabled, she has a low IQ, she is vulnerable.
The workers in the NHS, the police, the Social Services are not able to offer what they want to offer.
just a child
I caught myself thinking (not disparagingly but sympathetically) what a child M is, and then stopping myself because the whole system now regards her as an adult, and then thinking 'no, she IS a child'. Her behaviour is tantrum-esque, no different from when she was little. Shouting and screaming in her desperation, and yes moodiness. Up down up down, I tiptoe around her hoping that she will settle to a more even state.
Monday, 4 May 2015
more brilliance
Woken up to the sound of arguing, which, bearing in mind there is only me and M in the house is a bit of an odd sensation. Today is a day off work, it has been a hard week so it would be good to have a quieter day.
Turns out M is arguing on the phone with her mother's sister. When she gets off the phone she is fuming and comes into my bedroom to rant about how she isn't being listened to. M tells me that she is being told that she should be more understanding of her mother's needs ie the learning disabled kid should be more understanding of why her mother wouldn't come and get her home from hospital for eight weeks. Sheeesh.
This sets M back for the day, maybe for the week-end.
Yep. two days later now, she is still wound up and shouty, (I mean SHOUTY, for two days now) she is utterly pissed of with everyone from her mother's family, who she says are more interested in supporting her mother than her (which actually is very obviously true, though I never show M what I think when she says such things). I text the aunt to thank her for her intervention, she replies that "M seems angry at the moment, which is sad".
Brilliant.
Turns out M is arguing on the phone with her mother's sister. When she gets off the phone she is fuming and comes into my bedroom to rant about how she isn't being listened to. M tells me that she is being told that she should be more understanding of her mother's needs ie the learning disabled kid should be more understanding of why her mother wouldn't come and get her home from hospital for eight weeks. Sheeesh.
This sets M back for the day, maybe for the week-end.
Yep. two days later now, she is still wound up and shouty, (I mean SHOUTY, for two days now) she is utterly pissed of with everyone from her mother's family, who she says are more interested in supporting her mother than her (which actually is very obviously true, though I never show M what I think when she says such things). I text the aunt to thank her for her intervention, she replies that "M seems angry at the moment, which is sad".
Brilliant.
Wednesday, 29 April 2015
Let's not hold our breath waiting for a reply to this
Yesterday I wrote the email below to the Social Services in Lewisham. We have been awaiting the outcome of their assessment that was undertaken on the 10 April. We have still not had any comprehensive outcome but there was a single line email yesterday that said that she had recommended no action but that it would be her "manager's decision". I have sent three emails over the last three weeks. To date no replies to any of them.
28 April 2015
Dear Mrs xxxxx [Lewisham Social Services officer who has been 'assessing' M]
I was copied into an email from you yesterday that seemed to be
saying that Lewisham do not propose taking any action to meet M’s needs
because she has “moved back with her father”. This flies in the face of
reality and need.
In response to this I think that we have to understand the
following:
1
M has not “moved back” with me. I came
to get her from London due to the widely recognized inappropriate continued
placement of her in an Acute Psychiatric Ward (given that she has no Acute
Psychiatric condition but presents as Learning Disabled with emotional and life
skills issues). My coming to get her and bring her to Cumbria was simply
to get her away to a more appropriate setting than a hospital. Neither
myself, nor M, or her mother have stated that she is now living with
me. Given this clarity how has Lewisham concluded that she is no
longer your responsibility?
2
I emailed on 9 April and 14 April to seek
reassurances that Lewisham would not drop her case if I were to come and get
her away from hospital. These emails went unanswered. However I can
not believe that Lewisham meant me to imply that I should leave her in hospital
rather than offer her respite? Was I wrong to draw this conclusion?
3
At a meeting attended by myself, [her psychiatrist],
[her mother], [her social worker] (for Lewisham SS) and [her then Community Psychiatric Nurse] in November it
was agreed that due to M’s difficulties and her family circumstances that
she would be joint managed by NHS and Social Services in Cumbria and
Lewisham. To my knowledge the two NHS Trusts have continued to honour
this agreement and Cumbria Social Services have also done so. Has
Lewisham Social Services decided to withdraw this agreement? If so, please tell
us all when this decision was taken and by whom and by what rationale.
4
I understand that Lewisham and Maudsley NHS
Trust were forced to ask that M’s case was raised at Directorate level
between the Trust and Lewisham SS in order to obtain any intervention with
regard to her care and support. Please make available this
correspondence.
5
I have been told by [social worker] (Cumbria Social
Services) that she has had great difficulty in obtaining the assessment
undertaken by you on 11 April and that verbally you have indicated that M is not Learning Disabled. Given that M has had a long history of
medical diagnosis of inhibited intellect and cognitive ability, Dyspraxia,
Semantic Pragmatic Disorder, and various other needs and diagnosis since she
was two years old, has been extensively supported by education authorities
(including Lewisham during her Primary years) as needing 100% learning support
through the “Statementing” process due to her Learning Disability and
ultimately was placed in a residential school in West Sussex for 5 years by the
local authority at a cost of £55k per annum, can you confirm that Lewisham
SS now believes that she is not Learning Disabled and if so by what criteria
this conclusion has been arrived at?
M continues to be extremely distressed and made anxious
by the ongoing uncertainty being brought about by Lewisham Social
Services. This uncertainty is directly impacting on her health and
well-being. It also has a great impact on my ability to support her and
help her to be happy and well.
This matter is clearly urgent and I would hope that I will
receive a reply to this matter by return.
Yours
UPDATE: but lo, there was a reply....3 days later, this (just to be clear this is the reply in its entirety, I haven't edited it) -
Social Worker AWLD
UPDATE: but lo, there was a reply....3 days later, this (just to be clear this is the reply in its entirety, I haven't edited it) -
Hi Mr xxxxx
M assessment was
completed and sent to my Manager to authorise. M does have a needs. I am not
sure what you are talking about because M does have learning needs.
Regards
Mrs xxxxxxxSocial Worker AWLD
Saturday, 25 April 2015
ENOUGH
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 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.
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.
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.
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.)
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.
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.
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