Saturday, 31 May 2014

Story Seventy Seven - Bans

My apologies for the lack of stories over the past few days. On Wednesday we found out that Steven's mum, and my wife, had died suddenly and it's knocked us both for six.

Reading about the incredible decision of Southern Health to ban baths, reminded me of the number of times when Steven was in the Unit, or since, that Hillingdon had made similar sorts of decisions - a whiff of a problem and then a blanket decision.

Every time they do it, like with Sloven's decision, it exposes the charlatan nature of these places and these systems. For all the talk of person centred care and the phrase that social services always used with Steven - "We always put Steven at the heart of our decision making process", these actions show that to be cobblers. It is always about professional reputation and liability - the person needing the care doesn't even come into the equation.

I wrote about the alleged incident in the doctor's surgery where the two support workers were immediately suspended. Their suspension was never explained to Steven and their sudden disappearance caused him a lot of distress. Similarly, the council received an anonymous tip off that there were employment issues with the support workers. They immediately cancelled the contract - no investigation pending a withdrawal. The consequence of that was that Steven was left without any support for nearly two weeks. There was nothing in the allegation and two weeks later, everything was back to normal. But it shows the council's knee jerk reaction was to protect itself.

And of course, there was the cancelling of all of Steven's activities after the first DoL was served. When we went for the DoL appeal meeting, the chair agreed to reinstate the Mencap Pool but my friend counted the Unit manager and the social worker say 8 times - "Where does this leave the council?" Steven took a vicar's glasses off because he's been left on his own without any support and the response was to stop him going anywhere and instead, walk him round the garden three times a day.

It's funny because when the boot is on the other foot, it all changes. As part of their "independence" plan, the Unit were very keen for Steven to go everywhere by bus. Now, Steven finds bus travel so so difficult. All the noises sends him into sensory overload and it invariably leads to a meltdown. I asked them to reintroduce the cabs. They refused stating that Steven had to learn to manage these normal aspects of life. I sent them all sorts of stuff on sensory overload but the manager dismissed it all with that horrid cliche - "if you know one person with autism, then you know one person with autism". And it was never about independence or teaching Steven an important life skill - it was about money - a bus fare is cheaper than a cab fare.

It's ironic that in both the case of Hillingdon and Southern health that the more they try to do to protect their reputation, the more their reputation ends up in tatters.

Sad thing is though, society doesn't really give a toss. We can expose this shit but as the recent news from the Winterbourne JIP showed, people aren't leaving these places. In fact, more people are being sent to them.

Tuesday, 27 May 2014

Story Seventy Six - The Dream

I wrote on my Love Belief and Balls blog earlier about the dream I had last night that shed some light on the Personal Budget fiasco. Here is a dream that I had in April 2010, just after the first DoL was authorised.

Steven and I are in the audience of a large theatre. We are separated by an aisle running through the middle of the auditorium.

On stage, a very dark play is taking place. On the floor of the stage are several rusty dias. Standing on each dias are several characters, very similar to Shakespearian characters. There is a King Lear, the three witches and about five others. They are all rather grotesque. The speeches show they are quite mad. The dias start to spin, getting faster and faster. And the faster the dias spin, the madder the characters become.

Two workmen arrive and go under the stage to see what is causing the dias to spin so quickly. There is a huge server that is generating all the energy. It has malfunctioned. The faulty programming (wiring?) has become self serving, so that the fault is actually running the server.

By now, the dias are spinning furiously and the players are struggling to hold on.

An announcement comes over the tannoy that under no circumstances must we go onto the stage but to observe the performance from our seats.

It turned out to be a very useful dream. For the rest of the year, whenever I felt myself being sucked into the system's madness, I would make a concerted effort to not engage. I used the dream before I went into any meeting and had a mantra - "Stay in your seat - don't join the performance".

Monday, 26 May 2014

Story Seventy Five - Disguised Compliance

As 2010 wore on, extra fears started to emerge for me. Going back to February and the social worker's "there's always something or other with Mr Neary" email, I learned that it was absolutely futile to raise any concerns I had. Worse than me being dismissed and being written off as someone who "always wants to find fault with the care others give Steven", there often seemed to be a terrible consequence for Steven when I challenged the professional view. I pissed them off and Steven got punished. I guess it's the shadow side of the profession coming out. Not only was there the total certainty in their rightness to contend with, but worse, the tendency when feeling under attack, to attack back at the most vulnerable. It's like the obvious power gets abused & the professional safeguarders are the people you need most safeguarding from. I wish I had been their reflective practice supervisor. Many a time in my counselling supervision, my supervisor has challenged me as to when my shadow might be at play. It is useful, essential work.

But anyways - off my soapbox. In order not to rock the boat, I took to keeping schtum in meetings and smiling sweetly. The Unit manager said to me once, "You're very quiet in meetings Mark. And we know we're going to receive an email the day after, containing all your thoughts". That was true for several reasons. All the meetings were tremendously intimidating - I was always outnumbered - usually by about 6 to 1. He also didn't realise that most of my energy during a meeting was taken up either trying to sit on my rage or stop myself bursting into tears at the way they were treating my son. It seemed the best approach, albeit incongruent, to present my more considered thoughts after the event. Only once did I lose my temper - the day they came to tell me they had cancelled the holiday. We sat in silence for ages and then I told them to fuck off out of my house. I'll always remember the social worker's smile as she left the flat.

Late in 2010, I saw an advert for a social care conference that was being held. It was called: "Working with highly resistant parents" and had the sub-title: "Practical strategies to tackle obstructive behaviour and disguised compliance". It even had a section about the tactics that parents and carers use when "grooming the professionals". This disguised compliance stuff bothered me - you didn't agree with the professional opinion but pretended you did. I started to feel quite paranoid about this, but then thought - "hang on, this isn't my paranoia - this is their's". You've got to be scraping the bottom of your tactical barrel if you're going to accuse someone fighting to get his son home of "grooming the professionals with disguised compliance". That seems to me rather a paranoid approach to take for the professionals when dealing with parents and carers.

Even after the threat of disguised compliance - even now 4 years later, I still freeze in meetings. Our barrister expressed her shock after seeing me in one such meeting. She was used to me being fairly confident and articulate and called me a "tiny mouse". She was right. But I don't want our world turned upside down again.

Sunday, 25 May 2014

Story Seventy Four - Intimidated

I found it very scary how one word, one judgement call could have such a dramatic outcome for Steven and me.

As part of the fake transition home plan, Steven was allowed to come home for four hours on a Tuesday evening. I tried to stick to our normal Tuesday routine - so we had a takeaway and then did a marathon music dvd session. Steven was always accompanied on these visits by one of his normal support workers and a member of staff from the Unit.

You may recall that the Unit cancelled our holiday two weeks before we were due to travel. This Tuesday visit took place in the week that we should have been away. Steven was very upset and it was a difficult visit. He kept asking to go to Somerset and got more and more agitated that I had to keep repeating that we couldn't go.

The social care records for this visit read:

"Steven's behaviour was challenging from the moment we arrived. His speech was very repetitive and he tried to hit his father. Mr Neary was intimidated by this and twice left the room in an attempt to calm the situation. We decided, for safety reasons, to cut the visit short and return to M House".

In court, Hillingdon's barrister picked up on this report and asked me repeatedly whether I was intimidated by Steven. Of course, I wasn't, and am not, intimidated by Steven - he's my son - I know how to handle him when he's having a meltdown. But the barrister kept plugging away on this theme, using only the incident and the Unit worker's words from that evening to back up his position.

I eventually got upset and said that the reason I left the room was that I went to the kitchen for a private cry. It was distressing to see Steven so distressed, all because his holiday had been cancelled. By now, I knew that the Unit worker's purpose on a Tuesday evening was to collect evidence to support Hillingdon's position, so I was upset at the inevitability of this evening.

Thankfully the judge saw what was happening and described my evidence as "reasonable and very moving".

I was intimidated every Tuesday evening. Not by Steven. But by having someone sit in our living room, rarely engaging in the music session but recording every interaction that took place between me and Steven. Needless to say, in the Unit's model of ABA there was no mention of the cancelled holiday as a possible antecedent for Steven's upset that evening - that had been airbrushed from history.

But back to the start - I find it terrifying how one person's judgement call of how another might be feeling - intimidated - can have such disastrousus consequences.

Saturday, 24 May 2014

Story Seventy Three - The Bleeding Proclaimers

The psychologist who was appointed by the court to give an opinion on where Steven should live, made a great point that had been ignored all year long by the Unit. The judge agreed with him and quoted him in the final judgement. The psychologist wrote:

"In my opinion, very importantly, resident at home is the option that (a) involves the least change, and (b) maintains the closest contact with Mark Neary who has been the most stable feature of Steven's life. In my opinion, mark Neary, who is intimately acquainted with Steven's life history as only a family member can be, is highly likely to be the single individual able to reflect and rehearse with Steven a consistent and orientating life narrative that Steven is unlikely to be able to generate on his own. This, in my opinion, is the most important consideration in maximising Steven's quality of life".

It is so sensible and reasonable and incredible that it even needs to be stated, let alone, as I believe was the case with us, the whole case hinges on it.

You can't fudge a history. The Unit tried but it never worked. I used to have to meet the managers and tell them stories from Steven's history that they could talk to him about. They were interested in some of Steven's catchphrases and their derivations. I told them the Proclaimers story.

Every Thursday evening since 2003, we have done a music dvd session - ten songs - a break for a drink - and then ten more songs. We do the Thursday session together and then Steven repeats the whole lot back by himself on a Saturday night (He's doing it now as I write). One night, we were watching The Proclaimers doing Make My Heart Fly, when Steven screamed - "Dad - Charlie's got a bleedy face. Get him a plaster Dad". I looked and, yes indeed, something red was trickling down Charlie's face. A few minutes before, Steven had eaten a strawberry cheesecake and obviously, splashed a bit on the screen. That must have been about 2007 and for seven years since, Steven collapses in laughter if you ask him about The Proclaimers and strawberry cheesecake.

I was asked to write the script to this episode for the Unit, so they could converse with Steven on the subject. But it could never work. The people at the Unit weren't there when it happened. They've never had the endless conversations with Steven about the bleeding Proclaimer since. They didn't know the song. They couldn't do a Scottish accent. Have you ever been in a pub and two people are sharing a story they shared from way back - you can't join in - you don't get the reference points.

And it was pretty half hearted anyway and that's not fair on Steven and the importance to him of his history. At the same time all this was going on, they were compiling their submission for court where their suggestion for contact between us from the hospital in Wales was via a web-cam.

This is why families are so important and excluding them causes untold damage to the person.

Friday, 23 May 2014

Story Seventy Two - Management Investigation

Steven escaped from the Unit on 24th October 2010. It was nighttime and he was barefoot and in his pyjamas. Despite what the following report says, he must have been gone for at least 20 minutes to reach the point where he was found.

An internal investigation was carried out and I got the council's response on 11th January 2011 (2 weeks after Steven came home). Needless to say, the outcome of the enquiry wasn't available for the court hearing on 21st December.

This is what their report into the escape came up with:

"I carried out the investigation in accordance with the Council's policy and procedures and as such interviewed all of the staff on duty as well as the management team members for that service.

I viewed records relating to procedures within the home, care plan requirements and registration requirements,as well as reporting procedures. I have completed a report in relation to this matter to my manager and made recommendations for improvement where necessary.

I found that Steven left the main house through the porch door and the front door, leaving the internal door closed (?) and the external door open. He proceeded through the front garden, pulling out the secured bolt on the double locked front gates and walked up to C Road and R Lane. I found that he later reported that he wished to walk to "Julie's house". Staff noticed that Steven was not in the dining room where he was last seen after a very short period of time (2-3 minutes [bollocks] and begun to look in the house for him. It was then noticed that the external front door and gates were open and 2 members of staff went to look up the road briefly, before getting in their cars to look for him. A member of public confirmed the way that he walked. Staff drone and picked him up. He got into the car and was returned to M House. He had no injuries and it is reported that he was distressed at not reaching his destination, but not anxious about leaving M House itself.

I found that the staff on duty reported this incident to the management of the service and completed the required documentation.

I have made recommendations in relation to staff training in recording and reporting incidents and M House have had alarms fitted to the external doors to the service. I would like to reiterate that this service is not a secure service and as such doors are not locked to keep users in. However, in the case of Steven and other users, the alarms will alert them, when the service users are choosing to open the doors or leave the building.

I have also recommended that family carers are informed of any incidents within reasonable time scales."

And that was that. The next DoL was authorised a couple of weeks later without any reference to the escape and what Steven was intending to do. It wasn't considered relevant to the best interests assessor!

Wednesday, 21 May 2014

Story Seventy One - Declarations

 At the ("Window Dressing") Case Conference on 10th August 2010, Hillingdon announced that they would be making an application to the Court of Protection. The nature of the application would be to ask the Court to review the DoL and to make a best interests decision as to where Steven lives. They promised to submit the application within the week.

They lied. On two counts.

They didn't submit their application until 25th October 2010 but throughout the period from 10th August until 25th October, they told me they had submitted an application and that the delay was with the Court.

The second lie was that they didn't submit a DoL's review application - they made an application to be appointed Steven's welfare deputy. This would have effectively given them complete control over all the decisions in Steven's life. The declarations they sought didn't even mention the DoLs.

Obviously, I didn't know any of this until we got to court but it was terrifying. I was used to them lying by now, but the implications of this were huge and the consequences for Steven were just awful.

These are the declarations they asked for in their application:

  • a declaration that Steven Neary lacks the mental capacity to decide where he should live and what contact he should have with his family.
  • • a declaration that it is lawful for Hillingdon Council to place Steven Neary in appropriate residential accommodation identified by the council and to
  • • A declaration that it is in the best interests of Steven for contact between Steven and his parents Mr and Mrs Neary to be supervised and at the discretion of Hillingdon Council.
  • • A declaration that it is lawful for Hillingdon Council to make arrangements for the supervision and restraint of Steven when he is in the community and this will include when Steven visits the homes of Mr or Mrs Neary.
  • • Permission to Hillingdon Council to commission experts to assess Steven regarding the identification of the triggers and assaulting others. (sic)
  • • A declaration that it is lawful for Hillingdon Council to make long-term welfare decisions regarding the future care and residence of Steven Neary.
  • • Orders regarding the disclosure of information and images relating to Steven and others particularly on social network sites.
  • Deceiving everyone (including the Court) until the very end, it is chilling to think they might have actually got away with this. I'd imagine they have done this before with other people and goodness knows what happened to them.

    Tuesday, 20 May 2014

    Story Seventy - A Pink Inflatable

    I found my relationship with the social worker utterly impossible. There didn't seem to be any meeting ground at all.

    Early on in 2010, I had a dream about her that proved to be quite a good commentary dream and was useful throughout the year in informing me how to deal with her.

    The location for the dream was the river at Windsor.- the spot by Eton Bridge. I was travelling upstream in one of those small motor boats that you can hire there. Meanwhile, travelling downstream was the social worker. She was on a giant pink inflatable. It was double the size of the largest bouncy castle you have ever seen in your life. The inflatable was causing chaos on the river - boats were hurtling into the riverbank to avoid colliding with it. And yet, she was oblivious to all this. She was sitting on a throne on the inflatable, giving a majestic wave to anyone walking along the towpath. Nobody was noticing though - people were busy feeding the swans or heading off to the changing of the guard. I was aware that I was working very hard in my boat trying to navigate around her inflatable because I knew that it would be carnage if my boat hit her head on. End of dream.

    Well - she was certainly inflated. I believe her narcissism was the cause of a great many of the problems that occurred in 2010. I was intrigued how her colleagues used to give her a wide berth but perhaps they spotted the fragility of the inflatable as well.

    Towards the end of the year I was avoiding her completely. She used to invite me for a coffee to talk things over but how could I? I emailed her once, declining an invite and said: "How can I offload to you? You are the biggest cause of my distress. You cannot help me. In fact, meeting you would add incredibly to my stress".

    In a way, we did eventually collide in Court. Only she never made it to court. For both the December hearing and the week long inquiry in May she went sick. (The December one was odd because she was off for about three weeks leading up to the hearing but returned the day after it). I remember the day the judge picked up on her "There's always something or other with Mr Neary" email. That evening, coming home on the tube, I looked at the image from the dream and the pink inflatable was in bits - debris all over the river. For a whole year, I'd put so much energy into avoiding a collision and then it was inevitable. But as my mate said at the time: "What do you expect, riding a fucking huge inflatable done a busy river".

    Story Sixty Nine - Bradford

    My apologies but I'm going to break from the usual stories of Steven's time in the Assessment & Treatment Craphole today.

    It's been a very depressing day. I've had my own latest battle over the Personal Budget to contend with and feel like telling Hillingdon to stuff their personalisation up their arse. Then came the news that the Winterbourne View Concordat are in more trouble and no nearer publishing its findings. Next up came the latest twist in the McDonald vs Kensington & Chelsea case. You may remember Ms McDonald who had her nightcare funding cut and was told to use incontinence pads during the night (even tough she isn't incontinent). The case has now reached the European Court and is now McDonald vs UK. It's been going on for over four years and the judgement states that she has no night care funding at all now.

    And then, I saw this latest A&T Unit story in the Bradford Argos. What can we do? I truly believe that the #107days campaign is the greatest opportunity and most likely route to success in tackling ATUs and getting decent, human services for all our dudes. Better than any Concordats, committees, reviews, etc sodding etc.

    In the meantime, read Thomas Rawnsley's story

    A desperate mum fears she has lost her fight to stop mental health bosses in Bradford sending her disabled teenage son to live in a specialist unit 125 miles away. Paula Rawnsley has had her appeal against the decision rejected by Bradford District Care Trust, which means her 19-year-old son Thomas, who has Down Syndrome and is autistic, is now due to be transferred from Lynfield Mount Hospital to a specialist unit in Peterborough.

    Yesterday, Thomas’s father Paul Bradbury put in an 11th hour bid to keep him in Bradford. But Mrs Rawnsley said it would only “delay things” and feared her son would still be in Peterborough by the end of the week. Mrs Rawnsley, of Wibsey, said the move she had resisted at every turn was the latest in a series of complaints she had about her son’s treatment, including the use of anti-psychotic drugs and him being left naked in the corridors at the hospital’s Highfield assessment and treatment unit, where he has been held under the Mental Health Act since October. She said: “Because his dad has intervened now, hospital managers have to have another meeting, but it’s only going to delay the inevitable – they will still send him away. They say they’ve no other option.

    “When I visit him he can’t eat, he can’t talk – he just dribbles. “He’s been turned into a junkie; he’s addicted to his anti-psychotic drugs because he’s kept on the maximum dose to make it easier for them to cope. “It breaks my heart. He sits naked in a corridor just wrapped in a quilt. He has no modesty or dignity in there.“He is my beautiful, beautiful little boy. When I ask the unit why he’s left naked like that they tell me it’s what he wants. I ask them lots of questions, I don’t get real answers. I think they see me as a trouble-maker but I’m not, I’m Thomas’s mum. Highfield is not the place for him because they can’t cope, but neither is Peterborough. I don’t drive, I gave up my job to help care for Thomas, I don’t have any money. I can’t go to Peterborough every day – how can I protect him if I can’t see him?” “Thomas needs to stay near us. He loves us deeply..”

    Thomas had been living at Norcott House in Liversedge – a unit privately-owned by Leeds-based Woodleigh Care but funded by BDCT – but suffered ill-treatment by a member of staff. In February this year a Norcott House worker was given a suspended sentence by a judge at Leeds Crown Court when he admitted ill treating Thomas between December 2012 and spring last year. Mrs Rawnsley said: “Just after it happened they said they could not deal with Thomas at Norcott; his mistrust of staff was a risk to staff, they said. “He was sectioned and sent to Highfield but they coudn’t do anything for him. The trust then had a plan to find him his own little place through a company called Grey Healthcare. They found a bungalow near me in Wibsey and were going to bring in trained staff to look after him. It was going to be wonderful but then for some reason it was all off and there was nowhere for him to go again. “He went to stay with his dad and I gave up my full-time job to go and care for him there every day. His medication was changed and he got worse, he had these seizures where he’d go vacant, get aggressive and just lash out at anything. When he’d come round he’d sob and not believe what destruction he’d done. He was self-harming, banging his head against a wall, begging for help.”

    Thomas was sectioned in October last year and has been at Highfield since. Mrs Rawnsley said her requests for him to be seen by a psychiatrist with expertise in Down Syndrome and autism had been ignored. The Telegraph & Argus asked Bradford District Care Trust to respond to all of Mrs Rawnsley complaints. Nicola Lees, its director of nursing, said she could not comment on individual cases due to patient confidentiality but added that on rare occasions its assessment and treatment unit at Highfield might not be the right environment for a person who requires intensive care and treatment. “In situations such as this the trust would always work closely with the family and other health care providers to ensure that an individual’s needs are met in the best way possible,” she said.
    “We understand that transition into another care setting can be distressing for all involved and our staff are trained to advise on the support families can access.”

    Monday, 19 May 2014

    Story Sixty Eight - Potential

    In the last post, I mentioned the recent Court of protection judgement concerning ML. Much was made in the judgement about moving the young man away from his family and home in order "to reach his potential".

    This hit a few nerves with me because it was a phrase I heard a lot in 2010, especially from the social worker. It was often used in the early days as validation for keeping Steven in the Unit - he will learn lots of important life skills and become more independent. Presumably, that was her idea of reaching one's full potential. It was cobblers. The only new skill that Steven came home with a year later was how to make a pepperoni pizza. Lots of things he could already do, like the toasted cheese sandwich debacle and loading the washing machine, they claimed the credit for.

    The social worker's other catchphrase tied in with potential was "he's got so much more to give". This is X Factor language. A hapless contestant often pleads: "Vote for me because I've got so much more to give" before belting out Total Eclipse of the Heart in the wrong key.

    I became very distrustful of "potential" because it seemed to be masking something else. The only suggestion that the social worker ever had to realise Steven's potential was to send him to Citizenship classes. Steven went once, gave it the thumbs down and never went back again. I don't honestly think that he's compromised reaching his potential by not going. But not going became very problematic for a month or so because myself and the support workers were blamed for not pushing Steven harder. Another black mark against us because Steven had rebelled about someones idea of how he should achieve his potential.

    There's an inference in what the social worker said that, me, Steven's home environment and all the people involved in his life are somehow holding him back from his natural development. It's nonsense and doesn't stand up to any scrutiny at all but for a while it became very threatening. The only way Steven could demonstrate that he was developing was by embracing what their idea of development and potential was.

    What is potential anyway? I always believed it was self defined and self realised, even if it is not conscious. But having a social care professional, with their own agenda, judge someones potential and whether they're meeting it, keeps the person as "It" - a project to be worked on and developed.

    Sunday, 18 May 2014

    Story Sixty Seven - Testimonials

    Let's have a cheerful post.

    Day to day people from Steven's life really came up trumps during 2010. Especially after the council announced that they were moving Steven to Wales.

    Completely voluntarily, several people decided to write to the council, providing testimonials of Steven. They wrote about their experiences with Steven. And they wrote about how they thought the move would badly effect Steven. They wrote about they would really miss Steven if he was sent away.

    This must have been so challenging for the social care team. Not only had they decided that Steven doesn't have friends but they had also been able to dismiss any external view that didn't concur with their own. I wonder how they dealt with a sudden rush of people describing Steven as a "funny, talkative, friendly, inquisitive, wise, young man".

    So thank you to Margaret who runs the Mencap Pool and talked about her knowledge of Steven over 11 years. Thanks to Rosa, the mother of another autistic dude at the pool, who wrote about Steven's normal behaviour at the pool. The staff at Flex gym, where Steven had been going for five years wrote a great letter, expressing how important a member Steven was of the club. Some of the members got wind of this too and they also wrote about the "hard working and engaging young man" who was such a pleasure to know. Two men from the Virgin Active pool wrote and talked about the chats they have with Steven and the way he throws himself into In The Navy during the water aerobics class. A couple of the cab drivers wrote also (although their letter never got sent because I think their firm was worried about losing their contract if they were seen to be critical of the council). They wrote about the songs Steven greets them with when they arrive to pick him up.

    You can imagine I was in floods when I read all these wonderful letters, from wonderful kind people.

    The real tragedy was it made no difference whatsoever. I suspect they were thrown in the bin because they never appeared in the court records later that year. Steven was now "It" - these letters revealed a real human being, not in keeping with an It.

    Saturday, 17 May 2014

    Story Sixty Six - It

    Lucy Series left a comment on the "Curly Arms" post about the way that people with learning disabilities are treated like a project. She linked to a recent Court of Protection case, remarkably similar to ours, where the contrast between the the professionals reading of the young man as a project and his parent's love and embracing of his uniqueness was very moving.

    In all the reports written about Steven from the Unit, there is no sense that he is a human being. With human rights. With feelings. With memories. With attachments. With likes and dislikes. The reports present him as a problem to be fixed. He is an exhibit to be analysed. He is a project to be worked on. And the view of the type of life the professionals believed he should be living bore no resemblance to the type of life Steven was living, and wanted to live.

    BY the autumn 2010, I was meeting the professionals in neutral places. It may sound pretentious but I couldn't meet them in our home, our family space. Not just because they were intent on destroying that space, our family but because the place started to feel contaminated. I wanted the home that Steven came back to to feel like a normal family home, not the laboratory they wanted to turn it into. Before, they arrived, I would clean the place from top to bottom so it passed muster. And after they left, I'd clean it all over again to rid the place of its stench. At the same time, I found it hard to attend meetings at the Civic Centre. I was usually outnumbered by about 8 to 1. I'm a reasonably confident sort of chap but I felt terribly intimidated and became tongue tied.

    One meeting withe just me and the social worker took place in Costas (just before it became the council's non building based drop in facility). It was awkward. We were both totally inauthentic. She asked me a lot about my counselling work and said she would love to do that sort of work herself. And then we got onto the point of the meeting - the tenders had started to roll in for the long term placements for Steven. She wanted me to go and view some. I wanted to do nothing of the sort.

    I'm sure it was probably a slip of the tongue but at one point she said: "Steven may like it there. We have to test if It can adapt in a more structured environment".

    "Who's It?" I replied.

    She blushed and apologised and muttered something about needing to keep a professional distance. I wanted to bring back my lemon slice and suggested that she could maintain professional distance without turning the person into an "It".

    She paid the bill. I never went to see any of the "potential providers". And I think that was our last coffee meeting.

    Steven likes this video. I don't but it resonated throughout the year whenever I read one of their reports:

    Friday, 16 May 2014

    Story Sixty Five - Getting Priorities Right

    8th July 2010. I'd received the letter from Hillingdon that afternoon, informing me that they will never let Steven return home. We were in the final phase of the fake transition home plan  and Steven was due his 3rd overnight stay at home two days later. I phoned the Unit the night I got the letter, upset and angry and wanted some clarification about what happens next.

    The following morning, the manager of the Unit wrote to the head of safeguarding - the guy in charge of the DoLs procedures:

    "Could you please me, so that I can be clear on what action I should take on behalf of the authority?

    1. Under the DoL, The Unit is seen as the managing authority. As part of the DoL it was agreed that we would support Steven in the reintroduction of activities and risk assess Steven's behaviour prior to leaving the Unit and taking part in agreed and planned activities. Now that the letter has been sent  to Mr Neary, does this mean we are going to stop Steven's community activities as of now?

    2. Do we continue to follow the plan of Steven going to his father's house for the weekend and provide additional staffing at the family home for Mr Neary and suggest that Steven return to the Unit to sleep on Saturday evening?

    3. If we are going to provide additional funding for staff, who will fund it?

    4. What should I be advising staff on how to respond to Mr Neary when he phones or speak to them?

    5. What should I be telling Steven Neary?"

    It's Steven's life that is being turned on it's head but he comes last on their list of priorities. The order of the questions seems so telling to me and reflects how I felt throughout the whole year. They had just made a decision that will affect the rest of Steven's life but talking to him about it, is an afterthought. He is not seen as important enough to warrant having the whole plan built around him.

    Thursday, 15 May 2014

    Story Sixty Four - Curly Arms

    I'm returning to a previous story because I'm still going through the court records and found some fascinating email exchanges. This is about the "incident" that took place at the doctor's surgery where Steven was alleged to have kicked a woman in the surgery, who happened to be a council employee. This was the day Eva from the Unit had sent two new support workers out on very long trips with Steven, so he could learn about "task completion". The guys went in the wrong direction and an hour later went back to the Unit, only for Eva to send them out again, despite Steven being in full scale meltdown by this time.

    I've found an email exchange between the social worker and the manager of the support agency the day after the incident. The two guys had been suspended by this point for "not following risk management plans". (Needless to say, Eva, who also didn't follow a risk management plan by sending Steven out on a busy bus whilst he was having a meltdown, remained in post and got in with the task of buying Steven very small clothes). The social worker poses a series of questions and I include the support workers' manager's responses in italics.

    1. Why was the incident not reported to staff at the Unit as per guidelines?
         "The workers felt that it was a "near incident" and did not need to be recorded"

    2. Have you spoken to both workers individually?
         "Yes. I attach their statements"

    3. Were both workers with Steven at all times?
         "Yes, except for five minutes when one was speaking to the receptionist for the prescription"

    4. Why was F called (He was Steven's main support worker at the time on his day off). They should know they have to phone the Unit if they have any concerns?
         "They were calling to get directions, not to raise concerns at this point"

    5. Is Mr Neary aware of this? If not, please keep this confidential.
        "He is. I spoke to him last night".

    The manager then goes on to say:

    "It is for reasons of our good relationship that I have decided that it will be prudent and precautionary to recall the workers around whom an investigation is ongoing."

    I never found out what the outcome of the investigation was. Steven was blamed and the whole incident used against him in the court reports. The two workers were eventually sacked (one of them died a few weeks later of a heart attack). And Eva got promoted.

    To finish on a light note. There is a marvellous typo/brain loss moment at the end of the report written by one of the support workers. He had been asked to give a description of the woman in the surgery. He says:

    "The woman was in her mid 30s. She was wearing a black jumper and black trousers, with her hair up to her arms, which were curly".

    As he was sacked, I never got to see him again to hear more about the woman with the curly arms.

    Tuesday, 13 May 2014

    Story Sixty Three - Dr P

    One Friday afternoon on September 2010, I got a call from one of Steven's regular support workers. His wife had been taken ill and he couldn't do his shift that evening. Steven was due to go to the Mencap Pool, so I decided to stand in. I knew this would unsettle Steven a bit. It's the importance of routines again - I knew that he would be pleased to see me but I'm not normally involved in the Friday night swim, so the routine is broken.

    When I got to the Unit, the shift leader was in a flap. It was about 5.35. The cab was due to pick us up at 5.45. She told me that at 5.30, a psychiatrist, Dr P, had arrived unexpectedly and wanted to do a mental capacity assessment on Steven. The second DoL was due to expire and they had left it late organising all the assessments for the third DoL.

    In an email that the shift leader sent to the social worker she describes: "He (Dr P) was insistent to come in, if only for five minutes. His argument was that he had just finished work at the hospital and it was a good opportunity to meet Steven instead of coming all this way again next week and today's visit would cut the cost". There was no record of any appointment being made and she sent him back to his car to get some ID. At that point the cab arrived and I made the decision to carry on with our normal plan and go swimming. That was later logged as me being "uncooperative".

    Justice Jackson was very critical of the way Hillingdon went about all four DoLs and this short experience with Dr P sums up their whole attitude to the process:

    Is it okay to do a serious mental capacity assessment in five minutes?
    Is it okay to just turn up for the assessment, with the person being assessed being given no preparation?
    Is it okay that cost and the psychiatrist nor being inconvenienced takes precedence over the needs of the person being assessed?
    Did the Hillingdon arse actually know what the Hillingdon elbow is doing?

    Story Sixty Two - Dollies

    Remember Eva? The shift leader with an unhealthy sense of her power over four young men.

    I've mentioned before about the guy in the Unit who had a thing about removing zips, ties and cords from everyone's clothes. In the first two months at the Unit, Steven's 2 week old winter coat had the zip ripped out. The cords from all his tracksuits, shorts and trunks were pulled out. It was very embarrassing - he'd get out of the swimming pool and find he'd left his trunks behind. Same thing during his football session - he'd do some short sprints and his shorts would be around his ankles. Add that to the socks and underwear that repeatedly went missing and within two months, Steven had hardly any wearable clothes. Oh - and the Unit used an industrial washing machine and tumble drier, so that all his winter sweatshirts came out several sizes smaller than when they went in.

    In that first two months I spent about £300 replacing ripped, lost or shrunken clothes. But it didn't stop the replacements getting ripped, lost or shrunk.

    So, I brought it up in a meeting. I said that it was not right that Steven was wandering around in clothes that made him look like Max Wall.

    The manager's reply to that was: "Steven doesn't seem bothered. That's your autism Mark".

    He then gave Eva the project of replacing all of Steven's clothes.

    "Oh fantastic, "she replied, "I get to dress Steven".

    My heart sank. She didn't say this in a Gok manner but rather the manner of a little girl let loose in the Barbie and Ken aisle.

    Everything she brought was either too small or second hand and they all went in the recycling bin when Steven came home.

    Monday, 12 May 2014

    Story Sixty One - Curry & Fists

    Steven loves a train journey. He's not too fussed about the destination - it's the ride that is the important thing.

    For a few months prior to going into the Unit, Steven used to have a Thursday afternoon trip - Uxbridge to Aldgate - the full length of the Metropolitan line. They'd get out at Aldgate for a banana milkshake and then come straight back home again. He loved it.

    I'm surprised the Unit didn't put a stop to the train ride, considering how obsessed they were with "risk". They did eventually of course but until the DoL, they allowed Steven to access the community facilitate by public locomotives.

    One day, he got back to the Unit and asked to speak to me on the phone. He had his report to file.

    " Dad - been on the train to Aldgate. I first felt a fist. And then a kick......."

    I could feel the tension rising in the Unit. A fist? A kick? Better do a safeguarding referral

    Steven continued: "The last thing I saw as I lay on the flood was Jesus saves painted by an atheist nutter". (It didn't come out quite as clearly as that but I got the drift)

    The shift leader must have been beside herself by this point.

    And finally: " The wine's gone flat and the curry's gone cold".

    Wine? The support workers let him drink? And we're not having curry tonight.

    I could have set them straight but I don't think I would have been heard or believed.

    Story Sixty - Victim Shift

    Yesterday, Sara Ryan wrote the extremely powerful post about how Southern Health reported to Monitor that they were being "trolled" by people connected to the #107days campaign. The full post is here:

    It was incredibly similar tactics to the ones used by Hillingdon just prior to the Judicial Inquiry after Steven returned home.

    Although, it is not strictly speaking a story from Steven's time in the assessment and treatment unit, it does feel appropriate to add it at this particular time.

    This is the section from the submission from the social worker's manager:

    "There is a further matter that I would like to draw to the court's attention and it relates to the receipt of two anonymous letters in this Department. Two letters were handed in to the Civic centre reception. The letters made explicit threats to the allocated social worker. The letter was sent by someone who purported to be a "friend of the Nearys". The Council's legal services have liaised with Mark Neary's legal team and it is clear that there is no direct connection between the anonymous author and the family. Indeed, Mark Neary had expressed his disgust at what has taken place. Since the receipt of this letter, the social worker has been on sick leave and the case has been reallocated to another worker. The matter was reported to the Metropolitan Police and an investigation was conducted but there was no successful outcome. The Department is extremely concerned that a member of staff has been threatened and hopes that the court will take account of this".

    Make of all that what you will.

    Sunday, 11 May 2014

    Story Fifty Nine - Beliefs

    It's stitch up Dad time. Here are the reasons Hillingdon gave in their court statement, why they "believed" that Steven should not return home to me.

    Sorry for pointing out the obvious but as you can see they are founded on their "belief", with no evidence to support those beliefs.

    1. The LA has concerns that Mr Neary does not share the concern about the level of risk posed by Steven Neary's behaviour and his plan to take Steven on holiday was an example of this disparity.

    2. There have been additional concerns that Mr Neary has managed the difficult behaviours of his son with food treats. The behaviour specialists have also expressed concern that Mr Neary does not fully embrace the behaviour guidelines that are in place.

    3. The LA proposal is to carefully consider a plan to allow Steven Neary to visit his home that are not "treat visits" with fun activities, but "real life" contact visits where low level demands are placed upon Steven Neary to test out his responses and the management strategies within the home environment.

    4. The LA also has concerns about under reporting of incidents whilst Steven Neary is at home. There is a suggestion that Mark Neary might minimise his son's behavioural risk. I am of the view that Mr Neary needs to consider the very real risk that Steven Neary's behaviours pose to himself and others before he can return home.

    5. The LA intends to build in measures to maintain contact for Steve (!) with his family. This might include supporting Steven Neary to have contact via a web based camera facility.

    I was very scared by these allegations - how do you prove that their "beliefs" were unfounded. How can you provide evidence for something that doesn't exist?

    Thankfully, the judge rejected every single one of the "beliefs" and "concerns".

    Saturday, 10 May 2014

    Story Fifty Eight - The Expert Speaks

    Bear with me but I'm still going through the court bundle for reminders.

    Here are the "Discussions points" from a report written by the social worker prior to the April 2010 professionals' meeting.

    At this point Steven had been in the Unit four months. The Unit had recorded over 450 incidents of challenging behaviour. The fake transition home plan had been going for just two weeks.

    You can see that it is inconceivable to the social worker that being in the Unit is the cause of the problem. Her expert opinion is:

    "There has been an increase in Steven's behaviours. (Before coming into the Unit) Mr Neary had not reported to us any incidents with Steven. However I would suspect that there had been incidents within his home and out in the community and Mr Neary chose not to record them as accurately as they should have been, as it seems unlikely that the behaviours would have escalated to this level so quickly"

    Could some of the behaviours be down to Steven not understanding what we expect from him?

    "Confusion with the visits to Dad - are these leading to more behaviours and if so what can be done to help Steven with this?"

    Having that lack of insight and the certainty that the problem is "out there" is terrifying.

    Story Fifty Seven - Transparency

    Ah - transparency. It's a beautiful thing. Hillingdon pride themselves on their transparency, according to their website.

    You may remember that professionals meeting in April 2010, when they decided that Steven couldn't come home, they'd find a new placement for him and that I mustn't be told.

    Here are two emails from the court bundle, that were sent during the week following that meeting.

    The first is from the social worker's manager's manager and is to the direct payment team:

    "We may chose to keep Steven in (the Unit) which may be against Mr Neary's will. This information is presently very confidential. Please do not discuss with anybody until informed differently".

    The same day, the social worker wrote to the psychologist she had commissioned to carry out the mental capacity assessment about whether Steven had the capacity to decide where to live:

    "Mr Neary is unaware that we may need to keep Steven at (the Unit) or a place similar and he is not to be informed of this possibility"

    The award for "Family partnership working" is starting to look a bit rusty.

    Friday, 9 May 2014

    Story Fifty Six - Spiralling Costs

    The court bundle of social care records stretched to 8 lever arch files.

    One of the first pages, that caught the judge's attention was an email to the social worker from her manager.

    This email was sent on 31st December 2009 - the day after Steven was taken away. It shows that money was on the agenda from the word go:

    "I'm concerned about the costs spiralling here. The Unit costs around £2.5k per week. With the existing package continuing to be put in place whilst he is in residential care, the cost goes up to £3.5k per week and if you then go for a waking night in the Unit, it will be even more. Can we rationalise the use of the existing package whilst he is at the Unit".

    Note that Steven's name is never used once.

    He wasn't in residential care - he was in an assessment and treatment unit.

    What does "rationalise" mean?

    Was money at the root of everything that was to follow for the rest of 2010?

    Thursday, 8 May 2014

    Story Fifty Five - Baked Beans

    I wrote in the introduction to this blog that I was planning to include a range of stories about Steven's time in the Unit - including the good times he had. And after the distressing stories of the last few days, I thought it was time to include a good story. Trouble is, they're a bit thin on the ground, despite the Unit manager saying in court that Steven had lots of good, fun times in the Unit.

    The good times were never recorded - I guess they weren't considered important or relevant. I was never allowed to read the daily logs whilst Steven was in the Unit but I did get to see them when we got to court. They were either bald, factual statements ("Steven accessed his community programme this morning") that didn't tell you anything at all, or, the vast majority, were endless, upsetting records of Steven's "challenging behaviour". They felt like evidence rather than logs but I suppose that's exactly what they were.

    My friend Mary, who came with me to the first DoL review made an impassioned speech at the meeting: "Why don't you record and of the good things that happen?" We were told that recording the good things didn't fit with the model of functional analysis that the Unit were using to elucidate the reasons why Steven was being so challenging. Mary persisted - "But surely the good things are as important as the negative. If you can see the positive things about Steven, you'll be able to understand what works for him. And then you just do more of that". Simple. But not to the expert behaviourists.

    So, for examples of the "good times", I'm reliant on Steven's stories, his support workers and the more human members of the Unit's staff who would share good stories.

    Last night, I asked Steven - "Steve - tell me a good laugh from M House".

    He thought about for a bit.

    "Baked beans makes you do massive farts".

    There we go. A great life lesson. Thank you positive behaviour team.

    Wednesday, 7 May 2014

    Story Fifty Four - Teeth

    I'm still reeling from yesterday's discovery that for his first two weeks in the Unit, Steven believed I was dead and that it didn't occur to the staff that a simple phone call to me would take away all that anxiety. Not for the first time that year, the rules and policies of the Unit were put before the needs of the residents.

    Which brings me on to teeth.

    Steven has always been pretty good with his personal care. He can do most things. The two things he has always struggled with is wiping his bottom and brushing his teeth. I've sat for hours with him in the bathroom trying to teach him how to brush his teeth but he just licks the toothpaste off the brush and does a cursory couple of strokes with the toothbrush on his front teeth. To preserve his teeth, it is safer and better to clean his teeth for him.

    This went against the Unit policy of "Independence". Steven had to clean his own teeth and if he couldn't (or wouldn't) do it, that was that. The staff were obviously told not to intervene. You may remember from an earlier blog that I had to go through their training programme in personal care and their idea of support was giving verbal instructions and encouragement. And if that is the Unit policy, they couldn't deviate from that at all, regardless of the person's needs.

    In the summer of 2010, Steven's normal support workers took him for a dental check up and his long term dentist was shocked by the deterioration in his teeth. He needed two fillings and she remarked how dirty his teeth were. The dentist phoned me to tear me off a strip (she didn't know that Steven was away) and when I explained to her what was going on, she wrote a letter to the Unit, detailing a dental care plan for Steven.

    It was never implemented. Well, not until Steven came home six months later.

    Story Fifty Three - Bastards

    The total cunts.

    Steven's support worker has just spent the last hour reading back this blog. He said to me: "There's something we never told you at the time Mark. We knew how much it would upset you".

    For the first few days of Steven being in the Unit, he was convinced that I had died. The staff had told him he was there because I was ill and Steven put two and two together and made six.

    "Want to go to the hospital to see Mark Neary".

    "Mark Neary's gone to live in heaven".

    "Mark Neary's gone up the heavy side layer like Grisabella cat".

    "Won't see Mark Neary anymore".

    The Unit had a policy that there should be no contact between the "resident" and their family for the first two weeks and nothing would make them relax this policy.

    Steven wasn't even allowed to phone home to see if I was still alive.

    The Unit stuck to their policy and logged Steven's distress as examples of "challenging behaviour that needed further assessment to elucidate the motivation".

    Cruel beyond words.

    Tuesday, 6 May 2014

    Story Fifty Two - Head of Safeguarding

    The council's head of adult safeguarding was a corker. Not only did he have the responsibility for the role that his job title suggests but he was also the head of the supervisory body and responsible for the Deprivation of Liberty authorisations. That's an awful lot of power packed into a pair of size six shoes.

    In a way he embodied everything about Hillingdon's arrogance. They had removed Steven from his home. They were refusing to allow him to return to his home. Their plan was to send him to a new life 100s of miles from his home. But they never saw that they needed any outside authority from the court for those decisions. He genuinely believed that he had the power to do that without scrutiny. In fact, his argument throughout the year was that it was down to me to bring the matter to court. They could do what they liked. If I didn't like it, I could seek assistance from the court. I don;t know about you but I call that gold plated arrogance.

    There were several references in court to this position:

    "The service manager replied on 26 April, agreeing that "the Court of Protection is the correct place for this matter to be resolved." He suggested that Mr Neary might wish to take independent advice and agreed to set up an early meeting to review the evidence. In the event of major differences which appeared to have no resolution, he said that Mr Neary might wish to refer the matter to the Court of Protection."

    "Hillingdon's position remained unchanged, as reflected in a message from the service manager to colleagues with reference to the holiday and generally: "In the final analysis, Mr N can take the whole matter to the C of P if he feels a DOL should not be in place."

    "It was written following advice from the service manager, who reiterated that Mr Neary would have to initiate court proceedings if the matter could not be resolved. He also advised that "looking ahead, it would be helpful to demonstrate that LBH have involved Mr N in whatever alternative plan for Steven's future comes out of your professionals meeting."

    Thankfully, Justice Peter Jackson had this to say on the manager's position:

    "I have already indicated that the protracted delay in applying to court in this case was highly unfortunate. There are repeated references, particularly by the service manager, to the burden being on Mr Neary to take the matter to court if he wished to challenge what was happening. That approach cannot be right. I have already referred to the decision in Re S, which rightly observes that the practical and evidential burden is on a local authority to demonstrate that its arrangements are better than those that can be achieved within the family. It will discharge the practical burden by ensuring that there is a proper forum for decision. It will not do so by allowing the situation it has brought about to continue by default. Nor is it an answer to say, as Hillingdon has done, that Mr Neary could always have gone to court himself, and that it had told him so. It was Steven's rights, and not those of his father, that were in issue. Moreover, local authorities have the advantage over individuals both in terms of experience and, even nowadays, depth of pocket. The fact that an individual does not bring a matter to court does not relieve the local authority of the obligation to act, it redoubles it."

    So, next time you go to rob your neighbours home, advise them that they will have to go to court to stop you doing it - the onus is on them to prevent you carrying out a burglary.

    Story Fifty One - Routine

    A quote from the independent psychologist's report on 16th August 2010 (This is the one the council didn't want me to see and sat on it until 25th October).

    "Minimal attention has been given to Steven's autism".

    Routine is the foundation stone of Steven's life. It keeps anxiety to a level he can manage and allows him to enjoy the things that form the routine. Take away the routine and his anxiety rises to such a peak that the very same things that play a part in the routine are no longer enjoyable but a source of threat.

    Take for example, the Mencap Pool. Steven has been going there every Friday evening and Sunday morning since he was 11. So, the routine of going to the pool is the foundation stone. The building block on top of the foundation stone is the swimming - Steven likes swimming and that keeps him calm and settled. The block on top of the swimming is the people Steven meets at the pool. Steven likes his friends he meets there and that provides the enjoyment from the trip. But without the familiarity of the routine, the swimming and the meeting of his friends becomes problematic.

    The Unit could never accept this. There were hardly any routines in the Unit and this must have made Steven's anxiety unbearable for him. How could there be routines? Steven never knew from one day to the next, who would be working with him and what he would be doing. Whenever he tried to instigate his own routine, he would have to negotiate with the staff and other residents. And all his old routines from home - the things he did with me, his mealtimes, bathtimes, the things he liked doing (his dvds and his computer) were all suddenly thrown up in the air.

    I kept trying to point this out to the Unit as a reason for his difficult behaviour. But they turned it around so that I became the problem. I "pander" to Steven too much. I let him "control" the homespace. They couldn't see that it was not about pandering or being controlled but creating the space for him to feel safe.

    I kept being told that Steven "had to adapt". He had to learn to be more flexible. He had to learn to negotiate his wants and his time with others. All good life skills, they claimed. They couldn't see that, no matter how worthy those goals might have been, they were pointless without the basic foundation stone of a routine in place. Steven's stress levels would be so high that he wasn't in a place to learn something new.

    This impasse persisted all the way to court. Despite my protestations, the psychologist's report, the IMCA's report, the court expert's reports, nothing changed the professional view. Scary.

    Sunday, 4 May 2014

    Story Fifty - Daily Fears

    For 359 days, I lived with the daily fear of Steven coming to some terrible harm. It used to keep me awake most nights. I used to build up awful fantasies of receiving phone calls telling me that he'd either gone missing, had been arrested or was dead.

    From day one, it was clear that Steven was experiencing dreadful emotional harm from being in the Unit. His behaviour was a clear sign of that. He was so sad, confused and anxious. However, I felt confident that once he was back home, we could start to repair the emotional harm that had occurred.

    My bigger fear was that he might come to some physical harm. This was before, the incident that I wrote about in an earlier blog about the attack from the member of staff. One of the residents bit Steven's arm early on. It was very deep and Steven kept picking at the wound. It took nearly two years for the hole to clear up and even now, Steven has the scar of that encounter.

    I worried that Steven's naivety would lead him into trouble. One afternoon whilst I was visiting Steven, one of the other residents was trashing his bedroom. He had been at it some time and had punched a hole in the wall. Steven was intrigued by this and wanted to see what was going on. It was a constant fear that Steven's natural curiosity would lead him into danger.

    In the summer of 2010, the Unit cut back on staff and there were several times when there was just a shift leader and one other member of staff there. The shift leader used to shut herself away in the office doing endless paperwork, leaving the other poor sod to manage four residents. That scared me too.

    I also knew that the Unit and the social care team generally were pretty loathe to take responsibility for their part should anything go wrong. We'd had the incident at the airport when Steven got arrested but I never got any acknowledgement that the support worker had left Steven on his own for 15 minutes. Similarly, the incident with the vicar's glasses that led to the first DoL - there was never any acknowledgement that the Unit failed in its duty of care that day and allowed Steven to wander unsupervised out of the Unit. I knew that if Steven caused harm to anyone whilst he was there, he would be arrested and all the blame would be put on him.

    I had some therapy whilst Steven was away but it was very circular. I'd go along and talk about the latest news and my latest fears but couldn't really get any resolution because as the therapist said - my fears were not irrational - they had shown themselves to be real time and time again.

    That's a hard way to live your life for nearly a whole year. And that's just my fears. God knows what Steven's fears were.

    Saturday, 3 May 2014

    Story Forty Nine - Person Centred Plan (2)

    So, the "wish list" part of the person centred plan was ditched because all the things that Steven wanted included on it were refused. But not before, the managers suggested we have another bash at it and I come up with some things that Steven might like from a plan and they would consider those. If it wasn't so compemptuous it would have been laughable. A person centred plan - suggested by me and sanctioned by the authorities - nothing to do with Steven at all. The two managers from the Unit came to visit me and I could see they had an embarrassing dilemma - they had been told that person centred plans were the best things since sliced bread but as this experience was showing, the way that Hillingdon operates couldn't be more at odds with all the basic principles of person centredness. Their whole approach to social care was (is) system centred.

    Undeterred, the managers suggested that we work on the other aspect of a person centred plan - the life story book. A collection of photos, videos and stories that would help the person with "the narrative" of their life.

    This set enormous alarm bells ringing. I sounded remarkably similar to the life story books that are compiled when someone is adopted - Steven still regularly read his from 1994. All the talk at this time was about the council's tendering process for Steven's ongoing care. It was terrifying.

    Having said all that, I decided to go along with it for three reasons. Firstly, I knew by now that we would end up in court at some point and  I thought the videos might be useful evidence to show the judge. They would balance the picture that Hillingdon were painting of Steven. Secondly, I knew that Steven would like it. He's a bit of a performer and he would enjoy watching the videos back. And the final reason, and one I was really struggling with, was that if Hillingdon get their way, it will be the only thing that Steven would have left about his homelife. He would never be able to see his friends and family again, so perhaps a historical video record was the next best thing.

    We spent two weeks, videoing like mad. Everywhere Steven went, every home visit was recorded and I downloaded all the footage in case Hillingdon tried to edit the videos unfavourably. Two weeks later, I gave the camera back and that's the last we ever heard of a person centred plan.

    Person centredness (Hillingdon's version of it) entered our lives for three weeks and fizzled out three weeks later.

    Friday, 2 May 2014

    Story Forty Eight - Person Centred Plan

    It was September 2010. The fake transition home plan had been cancelled. The third DoL had been authorised. The council were receiving several tenders for the provision of Steven's ongoing care. One day the social worker announced: "Steven needs a person centred plan". She described the process to me and said that the first thing we needed to do was to get Steven to come up with a wish list - the things he wanted to do with his life.

    So, one day we all gathered at the Unit - Steven, me, two support workers, the social worker and the manager and deputy manager of the Unit. The manager took the lead and asked Steven all the questions but Steven directed all his answers to me. It was deeply uncomfortable. Steven was getting quite excited at the prospect of being asked about the things he really wanted to do. I could see withing five minutes where it was heading and wanted to put him out of his agony.

    Steven came up with six things for his wish list:

    "Want to live in the Uxbridge house with Mark Neary"
    "Want to go on holiday"
    "Want to open presents on Christmas Day in the Uxbridge house"
    "Want to see Toy Story 3 at the cinema"
    "Want to go to Hampton outside swimming pool"
    "Want to have sausage and bacon in Ali's bacon shop"

    All six things on his list were rejected by the social care team. The first two had already been long refused. Christmas Day was out because they hoped to have agreed their tenders by then and couldn't promise where Steven would be on Christmas Day. The cinema was a no-no as it was too risky. Ditto the swimming pool. And the bacon shop didn't fit in with their healthy eating plan. And besides none of the venues for the last three had been risk assessed.

    They never told Steven all six had been refused, so for weeks after, I had to deal with his questions about when he would be having his bacon sandwich.

    I guess Carl Rogers was spinning in his grave.

    Thursday, 1 May 2014

    Story Forty Seven - Personal Care

    I've been putting off writing this story since day one of this blog. Although it might appear quite trivial in the overall scheme of things that happened during 2010, it was the thing that left me feeling total humiliation. I never included the story in the Get Steven Home book and I've never told the story when I've been invited to speak at events. Deep breath Mark......

    It was the end of March 2010. The fake transition home plan was underway. One day the Unit decided that in preparation for Steven coming home, I needed to be trained the "positive behaviour" way and set up a training programme for me.

    The first three day programme was to how to manage Steven's personal care. I was to be instructed by Hildegard (remember her) on toileting, bathing, shaving and drying. The Unit had devised a symbol chart to help Steven with his personal care and I had to learn it too.

    So, I turned up at the Unit one morning at 6am and was put through my paces. The first lesson was just observation, so I sat on the toilet and watched Hildegard teach me how to wash Steven's hair. We covered water temperature, how much shampoo to apply etc etc.  The second lesson was more observation - this time the evening bath. As Steven always has his daily shit in the evening, it included me watching how they wipe his bottom.

    The third lesson was me taking charge and Hildergard observing me, giving me feedback as we went along.

    It was awful but the thing that stabbed deepest was she made me wear gloves. I should have shouted "fuck off" but I felt so utterly intimidated. In my scrambled head, I thought that if I did something wrong or failed in my learning, they might stop him coming home. So, for the first time in 19 years, I wore gloves as I wiped Steven's arse.

    And that was that. There was never any more training after that. I had done Steven's bath twice a day for 19 years but someone had decided I needed professional input.

    When we eventually found out that the council never intended to let Steven come home, I've asked myself many times over the past three years - what was the point of the training? Was it conscious? Did they mean to batter my confidence? Or did they arrogantly but genuinely believe that this intervention might be useful? I don't know.

    And there you go. Did it feel cathartic telling this story for the first time? Nope.