P

 

Our post on the final day of 7 Days of Action brings two very harsh truths about the current state of social care into focus.

This story has been anonymised. We won’t get to know the young dude’s name. We won’t get to see what he looks like. The family have received a lot of pressure not to reveal his identity. This is common. Like a court judgment, we will refer to the dude at the heart of the story as P.

Secondly, it is important to note in the story that the family weren’t having any problems at all with their dude prior to him going into the ATU. The mother asked for respite because SHE was ill. Family members’ illness is a common passport to detention in an ATU.

Here is our young dude’s story in his mother’s words:

My son is 17 years old.  He is locked away, miles from home, away from his family and everything that is familiar to him. Is he a criminal being punished for a crime? No, he has Autism, severe learning difficulties and this can result in behaviour that challenges.

He is sectioned under the mental health act in an assessment and treatment unit. The night he was sectioned was the worst night of my life. You see I had only asked for a bit of help, some respite, a short break, as I was unwell.

He had stayed late at school and I had been told respite was being arranged but it ended up with him being sectioned. He was taken by school staff who were being instructed by social services to a local adult mental health hospital, but rightly so the hospital refused to let him in as he was only 16 years old.

He was left sitting in the school transport in the hospital carpark for about 45 minutes with absolutely no understanding of what was going on, out of his structure and routine. He really doesn’t like waiting at the best of times, so after a while he became upset by just sitting there. His screams of distress echoed around the carpark.

The Social worker then called the police. They arrived, two cars with blue lights and sirens all for a boy that was upset. He was put into a police car and driven through to the back of the hospital. The police then placed him on a section 136 and he was allowed into a room in the hospital with two police officers.

He was assessed by two doctors and placed on a section 2 but had to stay where he was for the night as it was late. This meant he spent the night in an assessment room on a settee as there was no bed. He was given medication to make him sleep and the two police officers had to stay with him.

His dad, me and his auntie were all at the hospital but we were not allowed to see him. The school staff were still there too and some of them were in tears.

The next day he was transferred to an A.T.U and we were told not to visit him for a few days to allow him to settle in. When we finally got to see him he had two serious head injuries from banging his head on the floor while being restrained. As soon as he saw us he picked up his bag and thought we had come to take him home. I will never forget the look in his eyes as I had to leave him there and walk out the door.

As he was on a lot of different medication the Doctor in the A.T.U assessed him and decided to wean him off all medications. So over the next 15 weeks our life became an endless cycle of driving to the A.T.U every other day to visit him and try and maintain our family relationship.

He was discharged home and was so happy, however the support services we were given which were 4 hours a week were inadequate and after 7 weeks due to sheer boredom and a lack of things to do he ended up causing some damage at home and he was sectioned again, but this time we were told it was for a couple of weeks while a residential school was found for him.

For one reason or another the residential school plan never worked out as planned and now 7 months later he is still there, back on medications again, and effectively stuck on a section as he has nowhere to go. This is now an illegal use of a section as he is not being assessed and his treatment is complete and he has been ready for discharge for months now.

Along with his Autism he also has high sensory needs. He is in a unit that is extremely noisy, all noise echoes around the building and he walks around a lot with his fingers in his ears as a way of coping.

He has lost a lot of weight since being back in there and he does not eat the food in there as he has autism, he only likes particular foods.

Some days he really struggles there and constantly asks for his mom and he asks to go home all the time but you can’t really explain to him why he’s there and why he just can’t come home. He has not had any education for a year now and discharge planning is at a standstill because no one can agree where he should go. He has expressed that he wants to come home and go back to school but he’s not being listened to.

He spends a lot of his day pacing around the unit as there’s not much to occupy him. Sometimes he goes out to local parks and to McDonald’s for dinner.

On the unit he does some colouring or watches television. I try to visit him about 3 times a week now and I take a big bag of activities for him so he has something to do.

I would like to have him home but I would need proper support and if this is not possible he needs to be in his own home near to us as family is very important to him. The Doctor agrees that he should be near to his family too.

Social services think he would be better in an adult placement although we don’t have any of these in our borough so that would mean him living miles away.

The big concern now is staying in the A.T.U much longer will make his behaviours worse and it will do him more harm than good. This delay in discharge planning is frustrating as we have meeting after meeting and things never move forward. The Doctor has given notice that he needs to be discharged by the latest in July. Everyone involved agrees that he should not be there but no one can agree where he should be.

While all the professionals go home to their nice lives after yet another unresolved meeting, my son is struggling being stuck in an A.T.U and I barely sleep with worrying what will happen to him.

I’m hoping the next meeting we have we can work together and agree something otherwise I can’t see an end to this situation. I believe we would never have been in this situation to start with if it was not for the closure of local services due to funding being cut, as he had lived at home all his life and was happy going to school and to monthly respite. He had his moments of behaviour but they were not as frequent as they are now and that is just through the sheer distress of him being stuck in an A.T.U.

 

 

 

 

 

 

The Iron Gate

Here’s Stephen Andrade’s story, written by his mother, Leo.

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Just before he was 16, Stephen went to a residential school in Norfolk. Two years. It did not work as it did not have the services to provide for Stephen’s needs.

After two years, a multi disciplinary team comprising the doctors, the school and  Islington social services decided Stephen should go to the dreadful hospital St. Andrews. In Northampton. He was there two years. Steven became withdrawn and became a shell of the boy that we knew and love.

Then after much campaigning he was moved to a lower secure hospital in Clacton on sea, Colchester.

He has been at the Clacton Unit for almost 15 months. It was only meant to be a short term measure for assessment.

Here is a film  I took on my camera last year when I took Stephen’s younger brother to visit him at the Unit. he wasn’t allowed into the Unit and Stephen wasn’t allowed out. They hadn’t seen each other for two years.

There is no sign of Stephen returning back home.

Since he’s been at Clacton and being held there under the mental health act , it has been added one more year to his detention. The mental health section ends this June. I fear it will just be extended, probably for another year? In the meetings about Stephen, discharge is never discussed.

Stephen is having daily incidents and self harming head injuries.
Currently I am trying to get the medical team at the Unit to look into Stephen’s head where there’s this huge bump with skin. I fear it could be a haematoma. They say it’s not.

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I fear for my son’s life. No exaggerating

And I see no turning back time.

I wish I have never agreed to send my son away in the first place. Not just to St. Andrews to begin with but to the residential school also. Because if I had not, my beautiful smiley boy would be here at home and he would not have changed from a beautiful handsome happy smiley boy to one with very sad empty eyes that he is today.

It’s as if he has lost his soul.

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Stephen’s story was going to end there but Leo reported that in the past week things have taken another sinister turn. Unable to get anywhere with the Responsible Clinician, Leo made contact with the respected psychologist, PC and the plan was for Dr C to carry out an assessment on Stephen, a second opinion.

Here’s the email Leo received from the hospital:

Dear Leo,

Further to discussions with Dr D I need to advise that we are unable to provide access to any records or have discussions with Dr C in relation to your son.  All patients are protected by the Data Protection Act and clinical discussions can only be held with professionals and family/carers who are directly involved in his care.  I would therefore request that your request for Dr C’s involvement is re-directed to the CCG (Islington), who will then be able to ascertain the need, if any, for her involvement and in what professional capacity.  Once this has been established, Islington will need to forward us their request for her involvement and reasons why to justify any professional discussions to take place.

As per Tom’s email below, it is evident that the local team have worked hard in trying to find a suitable placement for S and there have been several assessments conducted at the Unit.  It is hoped that a suitable provider will be found in the near future to ensure a safe and sustainable discharge from the Unit.

I hope this helps clarify your request

We’ll end with Leo’s own words:

So I did call CCG.  They told me to call social services.

Why?  Why do these people hide behind the MHA and data protection ?

Surely as my son’s mother I have the right to get him help?

What are they so afraid of?
Why can’t they be open, and say we have nothing to hide?

Why use data protection , to stop me helping my son?
It’s my son’s human rights to have a second or third or whatever many options we wish. If Dr C can help my son why not let her ?

My son ‘s human rights are violated every day. And where is that data protection then?

Where is his protection when an alleged carer kicked him on his lower back?

Where is his data protection when he has gone to general hospital dozens of times with head injuries?

So I ask myself who is this data protection actually protecting ?
It is certainly not my son.

Is it wrong of me, to want to get my child the best care possible?

Life in a Conservatory

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Jack was born with ATRX syndrome (Alpha-thalassemia X-linked intellectual disability) which on its own has its difficulties. He attended a special school and had no issues there at all until it was time to leave at 16.

Jack’s anxieties were heightened more and more on the transition from school to college. He only visited the college once and on starting there, he found things very difficult. By this time he was known to CLDT team and was put on antipsychotic drugs.

Jack managed 18 months of college before they eventually excluded him because they could no longer support him. The next 18 months support came under the social care umbrella where they threw all kinds of support charities at him. It was inconsistent, which is the worst type of support when you have needs like Jack’s.

He hated it and his difficulties got worse to the point where he would go into town alone (as he was encouraged by the social care team to do) and get into trouble. The social care team didn’t like this and tried hard to control his life, activities etc. The psychiatrist was shelling out the drugs but wasn’t interested in Jack as a person at all. She prescribed 3 different drugs that he had extreme effects from, which added to his anxieties.

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I had asked for an autism assessment since Jack left school, but it fell on deaf ears.

The events leading to Jack’s first section(2) under the Mental Health Act (please bear in mind that Jack has never been diagnosed with a mental health problem) was the professionals believed that Jack needed help. To our regret, we went along with this and left him there for 28 days.

On discharge Jack had no diagnosis (autism or mental health), no care plan or aftercare. My husband had to give up his job to support him with me. They stripped Jack of all the meds they had previously prescribed and we had to wait 8 weeks to see a psychiatrist. But by this time he was finding things even more difficult.. My husband returned to work after the 8 weeks and Jack’s behaviour became challenging again and aimed at me a lot of the time.

Social services offered a flat for Jack. There was no transition, we weren’t allowed to see it beforehand and we were given just three days to prepare Jack for the move. We dropped him off on a Sunday afternoon. We spent 2 hours cleaning what the professionals called the flat. It wasn’t a flat. It was a conservatory added on to a bungalow that housed two other residents. In the conservatory Jack had a seating area and a small kitchenette. He had a single bed in the corridor between the conservatory and the rest of the house and a bathroom at the end of the corridor. We left him with 2 guys that hardly spoke to us. That evening it was highlighted that it was the wrong place for Jack but he was kept there for a further 2 days.

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Jack was so anxious and broken in the conservatory that the psychiatrist waded in there and then and sectioned him again. He was sent to an ATU in Birmingham. We live in Gloucestershire. I was not consulted at any point but the official papers says different! Jack pleaded with them for a second chance in the conservatory, even though he hated it and was very frightened there. He didn’t get one! After being in Birmingham for 2 weeks and after a lot of history written by myself, the ATU confirmed the diagnosis of autism and ADHD. Jack responded well to treatment and now has 3 days home leave each week. He is now waiting for a care provider to produce a team of people that can support Jack to come back to Gloucestershire.

Jacks section ended on 28 March 2016 but this has been renewed because of the wait for a care package to be put in place back at home. We see the section being renewed indefinitely, not because Jack needs to be under section but because the LA are making no effort in putting a care package together. They don’t have to spend a single penny whilst Jack is in the ATU and we get the impression they would like to keep it that way.

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The hospital are now trying to undermine our experience of Jack. We dont get any problems when Jack comes home on leave, although he gets very anxious prior to a home visit in case they cancel it. A couple of weeks ago, they cancelled Jack’s weekend home and Jack cleaned the whole ward in an attempt to get them to change their mind. Unfortunately, the unit are now saying they don’t  believe our reports of Jack’s behaviour at home. I know from other families that this is a familiar tactic to discredit families, it still feels very threatening for Jack’s future.

Jacks time in this ATU has really affected him. The tribunals,  the reviews have all taken their toll on him. It will take a long time to forget. Their control over him and us is disgusting, they pull the strings and we jump! I’d like to add being taken from home and sectioned in two different units could all have been avoided if a diagnosis was offered to him here in the community, but he had to be sectioned to get it!

Jack’s young life has been ruined all because the professionals couldn’t be bothered to get to know him. Unresponsive. A cocktail of antipsychotic drugs. No wonder he doesn’t know what day of the week it is

Jack hasn’t lived yet. He hasn’t had a friend and feels very unsafe at the moment

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