At about the same time that I got Cilla and Chris the Giant, Hillingdon decided to get a new weapon on board for them - the in-house psychologist.
My God - was she indiscreet. She went to a meeting at the Unit with the managers and later came out into the main living room. The Unit junior staff were there, along with Steven's support workers and Steven himself. She was chatting to one of the Unit staff about Hillingdon's plan to move Steven to Wales and said in full earshot of everybody - "Well, Mr Neary is the tough nut we have to crack".
Beryl Reid and her best schoolgirl friend used to have a phrase after meeting someone they didn't like - "Ugh, lumpy sick outside pubs". And in our house, that's what the psychologist became known as.
I was called to a one to one meeting with her. Later in the court records I found an email that the social worker sent her prior to the meeting. I had written to the Unit a few weeks before and mentioned that I feel "Steven would have experienced a level of trauma over the past year". In the email, the social worker mocks this statement by asking the psychologist to look at the "trauma" and "work with Mr Neary in relation to this "alleged trauma".
I had a stinking cold on the day of the meeting. It was late afternoon and quite frankly, I just wanted to go home to bed. I had already been told by one of Steven's workers about the "tough nut" bit and it was clear that her whole approach for the meeting was to do just that. Considering that I have worked as a counsellor for 14 years (which she knew) she launched into lectures about trauma and whether we know enough about the autistic condition to determine whether an autistic person can experience trauma. On a better day, I would have slaughtered her. It was so patronising and loaded with spite. She kept trying to draw me on my feelings about them moving Steven but as I knew a court date was looming, I preferred to save my feelings for the court.
The meeting started to peter out and then she said: "I'm not letting you go today Mr Neary until you can tell me five positive things about Steven's stay in the Unit". I looked at the clock and it was 5.15. I thought we'd be there all night. I could see that the whole point of the question was not to get an answer but to antagonise me and use my response for their "Un-cooperative parent" log. I actually sat there thinking, will she physically try to stop me if I just get up and walk out". In the end, buoyed by the confidence of having Cilla and Chris believing me, I just told her I was off and walked out.
She stayed on Steven's case for two years after he came home. In all that time, she never made one suggestion or recommendation of any use. Her mantra was "we need more data", so she would design more and more complicated logging forms. Once she turned up unannounced and uninvited to a meeting I had with Steven's dietitian. She had grand ideas above her station and saw it as a reasonable psychological intervention to try and intimidate her clients. She really was shameful and we're well rid of her.
Tuesday, 10 June 2014
Saturday, 7 June 2014
Story Eighty Three - Chris The Giant
The day after Cilla came with me to the meeting where Hillingdon announced that they had agreed the tender from the hospital in Wales, I got me a solicitor. It was 29th November and it had taken since the beginning of May to find legal representation. Cilla was taking three days off and told me to download the Court of Protection application forms and we'd complete them together on her return.
I took the next day off work, determined to find a solicitor. A few months earlier, Lucy Series made contact with me and we'd kept in regular contact. That day, she saw the Facebook post I'd done and she offered to help ringing around. About noon, she called me to say that she thought she'd found one. It was a legal firm in Cornwall - I live in West London. But she was just about to speak to the guy on the phone and was very hopeful. That guy was Chris Cuddihee.
It was another of those "angels" moments. That day, Chris just happened to be up in Paddington on a DOLs conference. He was finding it very turgid, so was prepared to bunk off for the afternoon and travel across London to meet me. Two hours later, I was waiting outside Uxbridge station when this huge man appeared - I'm 5ft 8 and he was at least a foot taller than me. We went back to the flat and Chris spent a couple of hours talking to me and getting the story onto his laptop. He then asked me to leave him for an hour whilst he went through all the DOLs authorisations. I didn't know what to do, so went upstairs and hoovered the bedrooms. Chris had a similar response to the authorisations as Cilla - he couldn't believe how bad they were. I came back into the living room and Chris was smiling. He stood up and shook my hand and said: "Right let's nail those cunts and get your son home". I knew we were going to get on swell. The doorbell rang and it was Steven's main support worker and his boss. I introduced them to Chris and there were lots of hugs and tears as for the first time in months, there was a light at the end of the tunnel.
Chris only met Steven three times but made quite an impression. Whenever Steven does one of his lookalike games, he always compares Chris to the really big people he knows - like Warrior in Gladiators. Chris had a boat that he used to sail in Cornwall and that really impressed Steven, who made up all sorts of stories about Chris going out one day to catch a killer shark.
Perhaps that precisely what he did.
I took the next day off work, determined to find a solicitor. A few months earlier, Lucy Series made contact with me and we'd kept in regular contact. That day, she saw the Facebook post I'd done and she offered to help ringing around. About noon, she called me to say that she thought she'd found one. It was a legal firm in Cornwall - I live in West London. But she was just about to speak to the guy on the phone and was very hopeful. That guy was Chris Cuddihee.
It was another of those "angels" moments. That day, Chris just happened to be up in Paddington on a DOLs conference. He was finding it very turgid, so was prepared to bunk off for the afternoon and travel across London to meet me. Two hours later, I was waiting outside Uxbridge station when this huge man appeared - I'm 5ft 8 and he was at least a foot taller than me. We went back to the flat and Chris spent a couple of hours talking to me and getting the story onto his laptop. He then asked me to leave him for an hour whilst he went through all the DOLs authorisations. I didn't know what to do, so went upstairs and hoovered the bedrooms. Chris had a similar response to the authorisations as Cilla - he couldn't believe how bad they were. I came back into the living room and Chris was smiling. He stood up and shook my hand and said: "Right let's nail those cunts and get your son home". I knew we were going to get on swell. The doorbell rang and it was Steven's main support worker and his boss. I introduced them to Chris and there were lots of hugs and tears as for the first time in months, there was a light at the end of the tunnel.
Chris only met Steven three times but made quite an impression. Whenever Steven does one of his lookalike games, he always compares Chris to the really big people he knows - like Warrior in Gladiators. Chris had a boat that he used to sail in Cornwall and that really impressed Steven, who made up all sorts of stories about Chris going out one day to catch a killer shark.
Perhaps that precisely what he did.
Story Eighty Two - A Date With Cilla
So, a week after Steven's latest escape from the Unit, Hillingdon eventually referred us to an IMCA. They had successfully blocked us getting one after DoLs number one, two and three in April, June and September. In two weeks time, the next DoL was due to be authorised (I'd long given up hope that they might be administered fairly, so an authorisation was inevitable). I've said it before, and I'll say it again, for me, it is one of the biggest flaw of the DOLs scheme - if the Local Authority don't want you to have an IMCA because they don't want their actions scrutinised, it is impossible to get one. You have to be referred by the people insisting on the DOL - you cannot refer yourself.
A few days later, I met our IMCA, Cilla, and we spent an hour going through the story of the year. She had already been to the Unit and picked up their logs and she was specifically interested in the best interest assessments. She took everything away and promised to get back to me by the end of the week. Later she told me that she was buying time - she couldn't believe how bad the assessments were and wanted to show her colleagues. I found it interesting that the Hillingdon assessments were so far removed from what a best interests assessment should be like, they made Villa disbelieve the evidence of her own eyes.
A week later, Cilla came with me to meet the 4th best interest assessor. I love Villa. She reminds me of Lieutenant Columbo. She has that bumbling style like him, sheets of paperwork all over the place. I could see the BIA smugly thinking "nothing to worry about here". And then Villa would go for the jugular. Repeatedly. My eyes filled up with relief - after 10 months of me against a posses, it was so heartening to have a professional fight Steven's corner. It didn't stop the 4th DOL being authorised but I think it showed Hillingdon that an external scrutineer was on their case.
Towards the end of November, Cilla came with me to the meeting where Hillingdon announced they had agreed the tender from the hospital in Wales and they wanted to start planning the move. Cilla was horrified and told them that their assessments would be deemed illegal when we got to court. It was the first time I considered that they might actually breaking the law.
In a way, Cilla had no impact on Hillingdon. Their arrogance saw her as an inconvenience to be swatted away. But Cilla started a process that built my confidence and quickly led to the court hearing.
I'll leave the last word to Justice Peter Jackson (who called her report "the first best interests assessment that deserves the name") and his opinion of the formidable Cilla, the woman who saved Steven's life:
"On 18 November, the IMCA delivered her report. It is an impressive document. For the first time, professional support was given to Mr Neary's arguments. The previous best interests assessments are subjected to analysis. The IMCA's conclusion is that Hillingdon was potentially not acting in Steven's best interests by refusing his father's request to have his son live with him at home. The fact that this is the most important relationship in Steven's life was noted. No evidence had been presented to show that the care he had given to Steven over the years was no longer appropriate. A return home, even as a trial period, should be considered. Further depriving Steven of his liberty might lead to emotional harm. Steven's wish to return home was rational and understandable and Mr Neary had demonstrated in a number of ways his willingness to work positively with professionals involved in providing care for his son"
Thank you Cilla, from two very grateful men.
A few days later, I met our IMCA, Cilla, and we spent an hour going through the story of the year. She had already been to the Unit and picked up their logs and she was specifically interested in the best interest assessments. She took everything away and promised to get back to me by the end of the week. Later she told me that she was buying time - she couldn't believe how bad the assessments were and wanted to show her colleagues. I found it interesting that the Hillingdon assessments were so far removed from what a best interests assessment should be like, they made Villa disbelieve the evidence of her own eyes.
A week later, Cilla came with me to meet the 4th best interest assessor. I love Villa. She reminds me of Lieutenant Columbo. She has that bumbling style like him, sheets of paperwork all over the place. I could see the BIA smugly thinking "nothing to worry about here". And then Villa would go for the jugular. Repeatedly. My eyes filled up with relief - after 10 months of me against a posses, it was so heartening to have a professional fight Steven's corner. It didn't stop the 4th DOL being authorised but I think it showed Hillingdon that an external scrutineer was on their case.
Towards the end of November, Cilla came with me to the meeting where Hillingdon announced they had agreed the tender from the hospital in Wales and they wanted to start planning the move. Cilla was horrified and told them that their assessments would be deemed illegal when we got to court. It was the first time I considered that they might actually breaking the law.
In a way, Cilla had no impact on Hillingdon. Their arrogance saw her as an inconvenience to be swatted away. But Cilla started a process that built my confidence and quickly led to the court hearing.
I'll leave the last word to Justice Peter Jackson (who called her report "the first best interests assessment that deserves the name") and his opinion of the formidable Cilla, the woman who saved Steven's life:
"On 18 November, the IMCA delivered her report. It is an impressive document. For the first time, professional support was given to Mr Neary's arguments. The previous best interests assessments are subjected to analysis. The IMCA's conclusion is that Hillingdon was potentially not acting in Steven's best interests by refusing his father's request to have his son live with him at home. The fact that this is the most important relationship in Steven's life was noted. No evidence had been presented to show that the care he had given to Steven over the years was no longer appropriate. A return home, even as a trial period, should be considered. Further depriving Steven of his liberty might lead to emotional harm. Steven's wish to return home was rational and understandable and Mr Neary had demonstrated in a number of ways his willingness to work positively with professionals involved in providing care for his son"
Thank you Cilla, from two very grateful men.
Thursday, 5 June 2014
Story Eighty One - Gauntlets
Like a Westlife song, I'm going to do a key change from now on. We have now reached Steven's last two months in the Unit and things certainly changed for the better. I've said before that Steven's barefoot escape on the night of the Take That reunion was certainly a catalyst for the things that followed. He threw down a gauntlet and it was important that I picked it up and ran with it.
The escape prompted another round of press interest. BBC London, in the shape of the formidable Kurt Bahling, took up the story. One morning in my flat, Kurt was on the phone to Hillingdon and their press officer tried to take the moral high ground by telling Kurt that he was "only interested in the jinx and japes" (whatever that meant). Kurt's final piece to camera was great: "We asked Hillingdon how a young vulnerable man in their care happened to wandering the streets barefoot and in his pyjamas on a bitterly cold night. Hillingdon replied that they couldn't comment as they were committed to acting in Steven's best interests. Kurt Bahling. BBC News, Hillingdon". Priceless.
I was also invited on to the Victoria Derbyshire show and was allocated 15 minutes after they'd interviewed the latest Alan Sugar Apprentice that had been fired. Victoria was very kind and fair and has invited me back several times since.
The local paper also did a piece which broke their record for the number of comments left by the readers. All, bar one, were totally supportive. The only negative one must have come from someone in Hillingdon - the writer knew too much about Steven to have come from anywhere else. Typically, the tone and intent was to discredit me and blacken Steven's character.
Heather Mills from Private Eye wrote another great piece, linking our story with the tragic story of Harry Horne Roberts, a 21 year old autistic guy who had died in a Unit earlier that year. The Unit had put him on a powerful medication regime but not told his parents. Harry's weight piled on and he died from heart failure.
And the powerful blogger, Anna Racoon, got interested. Anna has connections with the Court of Protection and had made it her mission to make the Court more open. I guess our case was just what she was looking for but she blasted our story across the internet.
The National press started to contact me. And after months of trying to get legal representation, some legal firms also contacted me, although it didn't immediately lead to any action.
So, within three weeks of Steven escaping, the story had broken nationally and after trying to get an IMCA to help us to challenge the DOL for eight months, Hillingdon finally referred us to the IMCA service.
The escape prompted another round of press interest. BBC London, in the shape of the formidable Kurt Bahling, took up the story. One morning in my flat, Kurt was on the phone to Hillingdon and their press officer tried to take the moral high ground by telling Kurt that he was "only interested in the jinx and japes" (whatever that meant). Kurt's final piece to camera was great: "We asked Hillingdon how a young vulnerable man in their care happened to wandering the streets barefoot and in his pyjamas on a bitterly cold night. Hillingdon replied that they couldn't comment as they were committed to acting in Steven's best interests. Kurt Bahling. BBC News, Hillingdon". Priceless.
I was also invited on to the Victoria Derbyshire show and was allocated 15 minutes after they'd interviewed the latest Alan Sugar Apprentice that had been fired. Victoria was very kind and fair and has invited me back several times since.
The local paper also did a piece which broke their record for the number of comments left by the readers. All, bar one, were totally supportive. The only negative one must have come from someone in Hillingdon - the writer knew too much about Steven to have come from anywhere else. Typically, the tone and intent was to discredit me and blacken Steven's character.
Heather Mills from Private Eye wrote another great piece, linking our story with the tragic story of Harry Horne Roberts, a 21 year old autistic guy who had died in a Unit earlier that year. The Unit had put him on a powerful medication regime but not told his parents. Harry's weight piled on and he died from heart failure.
And the powerful blogger, Anna Racoon, got interested. Anna has connections with the Court of Protection and had made it her mission to make the Court more open. I guess our case was just what she was looking for but she blasted our story across the internet.
The National press started to contact me. And after months of trying to get legal representation, some legal firms also contacted me, although it didn't immediately lead to any action.
So, within three weeks of Steven escaping, the story had broken nationally and after trying to get an IMCA to help us to challenge the DOL for eight months, Hillingdon finally referred us to the IMCA service.
Tuesday, 3 June 2014
Story Eighty - The Cast
There's a quiz element to today's post but you have to read to the end to find the quiz.
During and in the immediate aftermath of Steven's year in the Unit, the following cast of characters (stakeholders???!!!) were assigned to his "case":
1 social worker
1 social work manager
1 support planner
1 transition manager
1 Head of Services
1 Head of Residential services
1 Positive behaviour support manager
1 Deputy positive behaviour support manager
4 psychiatrists
1 keyworker
1 linkworker
2 psychologists
4 best interests assessors
1 Safeguarding lead for DoLs
6 Locum borough solicitors
3 speech and language therapists
1 Learning Disability Community nurse
2 Occupational therapists
approx 20 Unit support workers
1 Dietitian
And the commissioned agency on a 100% mark up
All because Steven was being held in an inappropriate place where he didn't want to be.
Quiz: What is the combined salary for the cast of stakeholders? And how might Steven's (and a lot of other people's) life had been enhanced if some of that money had gone directly to his care?
During and in the immediate aftermath of Steven's year in the Unit, the following cast of characters (stakeholders???!!!) were assigned to his "case":
1 social worker
1 social work manager
1 support planner
1 transition manager
1 Head of Services
1 Head of Residential services
1 Positive behaviour support manager
1 Deputy positive behaviour support manager
4 psychiatrists
1 keyworker
1 linkworker
2 psychologists
4 best interests assessors
1 Safeguarding lead for DoLs
6 Locum borough solicitors
3 speech and language therapists
1 Learning Disability Community nurse
2 Occupational therapists
approx 20 Unit support workers
1 Dietitian
And the commissioned agency on a 100% mark up
All because Steven was being held in an inappropriate place where he didn't want to be.
Quiz: What is the combined salary for the cast of stakeholders? And how might Steven's (and a lot of other people's) life had been enhanced if some of that money had gone directly to his care?
Story Seventy Nine - Some Maths
Short and not so sweet today.
I've been doing some sums.
The money spent by Hillingdon on keeping Steven in the Unit for a year, plus their costs in the court case and the damages the court ordered them to pay, would have funded Steven's current care package for just over four years.
Four years?
I've been doing some sums.
The money spent by Hillingdon on keeping Steven in the Unit for a year, plus their costs in the court case and the damages the court ordered them to pay, would have funded Steven's current care package for just over four years.
Four years?
Monday, 2 June 2014
Story Seventy Eight - Bashing
Watching a Mr Bean episode with Steven this afternoon reminded me of another "closed minds" Unit story. If I was on Just A Minute you would have buzzed me for repetition by now but today, I discovered an added twist to the story.
It's another of those stories that got logged as "violent and challenging behavior", with " no obvious antecedents". It still scares me that the Unit were so lacking in imagination or the will and respect to get to know Steven. They were prepared to send Steven hundreds of miles away for further assessment, rather than ask for the input of the people who know him best.
The Unit had brought a new TV. A very large flat screen TV. They were having problems setting it up. I can imagine Steven sitting on the sofa, getting frustrated at this. So he did what any right minded Mr Bean fan would do - he got up and bashed the top of the telly. It worked for Bean. It didn't work at the Unit. Consequence for Steven was that he was banished for the next months of his time there to the dining room with a portable TV.
We were watching the scene today and when Mr Bean did his business, Steven said: "Like Steven Neary at M House". His support worker who has been with us since the Unit days did, " Oh - I remember that. I did say to the manager that was how Mr Bean got his TV to play but nobody was interested".
It's one thing not asking the workers who knew Steven best for their views. It's another thing completely to ignore them just because their knowledge doesn't fit into the Unit's ideas or it challenges their plans. I'm not saying that the Unit staff should be expected to think of all the popular cultural references in Steven's life. But it's pretty crap when they're offered an explanation on a plate, they chose to smash that plate on the floor.
It's another of those stories that got logged as "violent and challenging behavior", with " no obvious antecedents". It still scares me that the Unit were so lacking in imagination or the will and respect to get to know Steven. They were prepared to send Steven hundreds of miles away for further assessment, rather than ask for the input of the people who know him best.
The Unit had brought a new TV. A very large flat screen TV. They were having problems setting it up. I can imagine Steven sitting on the sofa, getting frustrated at this. So he did what any right minded Mr Bean fan would do - he got up and bashed the top of the telly. It worked for Bean. It didn't work at the Unit. Consequence for Steven was that he was banished for the next months of his time there to the dining room with a portable TV.
We were watching the scene today and when Mr Bean did his business, Steven said: "Like Steven Neary at M House". His support worker who has been with us since the Unit days did, " Oh - I remember that. I did say to the manager that was how Mr Bean got his TV to play but nobody was interested".
It's one thing not asking the workers who knew Steven best for their views. It's another thing completely to ignore them just because their knowledge doesn't fit into the Unit's ideas or it challenges their plans. I'm not saying that the Unit staff should be expected to think of all the popular cultural references in Steven's life. But it's pretty crap when they're offered an explanation on a plate, they chose to smash that plate on the floor.
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