Tuesday, 29 April 2014

Story Forty Six - More Risk

It was a couple of weeks after the Mencap Pool had been risk assessed. The Unit had drawn up their risk assessment bible and we were all struggling to follow the many pages of it.

Steven had been back at the pool about a week. There is another dude who uses the pool, who Steven tends to give a wide berth to. The dude is interested in Steven and often comes quite close. Anyway, this particular evening, along comes the dude and, I guess, a bit too close for comfort for Steven, who hit him across the back .From what I can gather it was a push more than a hit. The people at the pool have a great attitude when things like this happen (and Steven has been on the receiving end over the years as much as he's dished out). They deal with it quickly, empathically, firmly and respectfully.

This is now September and one of Steven's support workers had been, quite frankly, driven mad by the oppressive regime of the Unit. For weeks, he had been paranoid that everywhere they took Steven they were being followed by staff from the Unit, waiting for them to slip up. I don't think they were followed but time and again, the Unit treated Steven's regular workers like shit. His feelings were understandable. So, when they got back to the Unit, he wrote a full incident report of what the Unit turned into "an assault".

Outcome = more in depth risk assessments needed. Steven was stopped from going to the pool for another period of reassessment. The regulars at the pool were horrified by this sanction. It's just not how we deal with stuff at the pool. The woman who runs the pool wrote the Unit a letter. And tear jerkingly, the mother of the dude, also wrote a lovely letter, pleading with the Unit to change their mind.

This prompted the most sanctimonious load of shit from the social worker - she outdid herself: "Pretend it didn't happen? So, are our learning disabled people not to be taken seriously when they're assaulted. Don't they have the same rights?"

This was pretty rich coming from her. The person who had lied to Steven for seven months about her plans for Steven's future. Don't learning disabled people have the same right to be told the truth about social worker's plans?


Monday, 28 April 2014

Story Forty Five - Risk Assessing

I wrote in an earlier blog that when Hillingdon authorised the first Deprivation of Liberty order, they cancelled all of Steven's outside activities until they had done risk assessments of all the places he goes to. He only goes to five places regularly, one of them is a council run centre, but it took them three months before they completed all the assessments.

The first one they did was for our local Mencap Pool and this story shows the arrogance that they felt.

Steven had been going to the Mencap Pool for 10 years. The group he belongs to is primarily for the learning disabled. It can get a bit hairy at times but there is a love and empathy and lack of judgement there that is very rare. Anyway, one Friday night the manager of the Unit turned up to do his risk assessment. He didn't announce himself to the people who run the pool, he didn't explain why he was there - he just wandered round the pool making notes. The organisers of the group were thrown by this attitude as it is unheard of for a stranger to wander into the pool and not  talk to anyone. It also shows a disregard for the users of the pool.

The risk assessment was duly completed - 10 pages of dos and donts. It was an incredible document. Everything was broken down into a scale ranging from "intolerable risk" to "minimal risk". I showed it to a friend who does risk assessments at Heathrow and he said they had slimmer documents to cover attacks on aeroplanes.

Of course, it was just an exercise in arrogance and job justification but it angered me that Steven wsa being used like an object to achieve that justification.

Story Forty Four - Case Conference

Yesterday I wrote about the wonderful people we met at the demonstration that took place on the day of the "window dressing" case conference. Back down to earth with a bump, here is the story of the actual conference.

The meeting was scheduled to begin at 2pm - I was hardly likely to forget something as important as the meeting where Hillingdon lay their cards on the table about their plan for Steven's future. At 1.45, I received a call from one of the managers, asking me why I was 15 minutes late. I lost count of the number of times when meetings would be put back or cancelled without me knowing, but this was the first time, they tried to unsettle me by insisting I was late. So, I put down my placard and went into the Civic Centre.

My friend came with me and the first shock was that none of the usual suspects were present - just three very very senior managers. This was never explained but I guess it had something to do with the press coverage our case had been receiving. Time for the big guns.

It was utterly depressing. One of the managers kept saying that she wanted Steven to be "futureproof" but she couldn't explain what she meant by that.

They stuck to their guns about Steven never being allowed to return home. And they refused to allow a trial period where we could put to the test, whether I could cope with Steven at home. Nothing would shift them. Instead, they talked about their plans to call for "tenders for Steven's care" from residential facilities. There was nothing locally, so they said I should prepare myself that the move could be many miles away.

By now, I knew more about the MCA and DoLs and knew that Hillingdon didn't have the authority to make these decisions - they had to be put before the court. Hillingdon had already thought about this and said they would be making an application to court by the end of the week (it was the 10th August).

They didn't. It took them until 25th October to submit their court application. And even at this stage, I was still sort of trusting them, so didn't bother to submit my own application believing that they would keep to their word. Ain't I a fool.

My friend took a pen camera with her but we decided not to use it. Which was a shame because it would have been great to post some footage of three people driven mad by the system in which they work, banging on about a human being becoming "futureproof".

Sunday, 27 April 2014

Story Forty Three - Window Dressing

In August 2010, the council invited me to a case conference to discuss their plans to move Steven to Wales. This is the meeting that Justice Peter Jackson described as "window dressing". The meeting was putrid but this post is about the good things of that day.

The Get Steven Home had been running about 6 weeks at this point and had amassed about 4000 members. There had been lots of discussion within the group how to mark the day of the conference and it was decided to hold a demonstration outside the Civic Centre. Obviously, most people couldn't get there but two actions were decided for those who couldn't attend. As many people as possible would send an email to the director of social care that morning, asking her her to revisiit their decision - she must have arrived to work to find 2000 emails. And at 2pm that day (the time the meeting started) people would play Mama Mia in tribute to Steven.

Here are the great things of the day:

My sister's partner designed placards with pictures of Steven from our Blackpool holiday.

My friends Shelley and Mark designed the fliers and badges to hand out. (When I reported that on Facebook, I did a typo and wrote "Shelley and Mark turned up with a hundred badgers - I got lots of questions as to what we used the badgers for).

A woman who was the mother of a young autistic boy arrived. It was the school holidays but she had used some of her valuable respite to arrange care for him to enable her to attend the vigil.

Steven's old school caretaker turned up and reminded me that Steven used to serenade him with "Ground Control to Major Tom".

A guy with aspergers arrived and wouldn't let go of my hand until I promised that I wouldn't let them take Steven away. A similar thing had happened to him five years earlier and it took him three years to return to his family.

People from Steven's gym came over and turned the gym foyer into a Get Steven Home event.

Jean, who runs the Mencap Pool, came and took fliers down to the shopping precinct. She even got HMV to play Mama Mia at 2pm.

Two of my clients turned up having read the story in the local paper and said that as I'd helped them, they now wanted to lend their support for me.

The local paper and Private Eye followed up their earlier stories with a report of the day

And hundreds of complete strangers stopped for a chat and to sign the petition.

Amidst all the bleak moments of 2010, it was an oasis of beauty.

Saturday, 26 April 2014

Story Forty Two - Michael Buble's Hair

Ever since Steven was a nipper, he has had a thing about smelling hair. He only asks to smell, mine, his mother's and his longest term support worker's hair. It's a quick sniff and it kind of reassures him somehow. The Unit didn't like this and decided that it had to stop. They deemed it inappropriate. I'm not sure if it is or it isn't and I didn't want to try and block Steven from smelling my hair. It was harder for the direct payment worker because although he was my employee, he knew that if he didn't comply, the Unit would contrive a way of getting rid of him. Steven didn't understand why Chris was suddenly saying "no" and it led to some difficult moments between them (all logged by the Unit of course).

The Unit conflated the hair smelling with another of Steven's habits, which is asking what a famous person's hair smells of. You give him an answer (Marmite, Sprouts, Farts etc) and he goes away happy. But the Unit felt that because this was about hair, they should refuse to answer Steven whenever he asked the question.

One day I went to visit and heard the commotion whilst I was still walking down the road. When I arrived, I was told that Steven had thrown a glass of milk over another resident and had kicked the office door, leaving a hole. He had been sent to and locked in his room until he calmed down.

They didn't want me to go to see him in his room because I "might be at risk". I told them not to be so daft and in I went. Steven had ripped his t-shirt in his agitation.

He screamed at me: "Dad - Michael Buble's hair smells of?......."

I replied: "Michael Buble's hair smells of Fruit Pastilles Steve".

He calmed down.

#107days #justiceforLB

Friday, 25 April 2014

Story Forty One - Burns

One Sunday morning, one of Steven's regular support workers and I took Steven to the Mencap Pool. Whilst in the changing room, we noticed that Steven had a nasty burn mark on his bum and another on his lower arm. Steven said he burned it on the oven at the Unit.

I left it at that but the support worker was very concerned how he came to burn his bum on the oven. He must have had his pants and trousers down at the time.

We spent all day speculating how it could have happened and what to do about it.

In the end, to my shame, we decided to do nothing. All year long my concerns about anything were ignored and me and Steven just became labelled as the problem. I knew that if I asked them to look into it, either they would do nothing or if they found something untoward had happened, they would cover it up and make Steven pay the price.

It was called survival.

#107days #justiceforLB

Wednesday, 23 April 2014

Story Forty - The Binders

In the year Steven was in the Unit, he filled up 6 lever arch binders. For the first few weeks, these binders used to drive me bonkers and they created a lot of tension between me and the social worker and the Unit manager. I wasn't allowed to read them.

The official line was that if I read them, it would breach the confidentiality of Steven, the staff compiling the logs/reports and any other person named and written about in the logs.

All the staff and the support workers were allowed to read the logs. Any visiting professional was given full access to them. The only person who wasn't allowed to see them was me.

On one occasion the social worker was going on about Steven's choices and encouraging him to make choices about his life (Oh yeah!) Feeling rather belligerent, I asked her whether we could give Steven the choice as to whether I read his logs. She replied that this wasn't a choice that was his to make.

I said that the main reason I'd like to see them was that it would help in conversation with Steven - we could talk about things he'd been up to. That cut no ice and she reminded me that any feedback or information must come through her or the Unit manager. So, there was an unease about Steven and I talking about normal day to day stuff. I just felt that they must have an awful lot to hide if they were so worried about Steven talking to me about how his day had gone.

After a couple of months, I gave up on the log. Partly it was because they couldn't actually stop Steven talking - I'm not talking him revealing Unit secrets - just the normal stuff of his day to day life. And most of the support workers had given up on Hillingdon's rule that we weren't allowed to speak to each other, so they would tell me the stuff they considered important.

But the biggest reason for giving up the binders was that they were a pile of shite. I couldn't trust any of the information they contained. The logs were just a tool for Hillingdon to build up their case. They bore no resemblance to the reality of who Steven really is.

But then who's life could stay real when it is reduced to the sterile, clinical recording of a log.

Tuesday, 22 April 2014

Story Thirty Nine - Bingo

I met up with one of Steven's old support workers yesterday. He was the guy who gave evidence in court and was Steven's main support during his time at the Unit. I know that we have a great mutual respect for each other. He told me a great story from the Unit that I'd never heard before.

One night, the staff set up a game of bingo. It was quite a performance and the person organising it went to great lengths to get everyone involved.

Steven was quite excited all day.

For the first five minutes, Steven was beside himself and kept yelling "Bingo" everytime one of his numbers were called out.

After about 10 minutes, his interest stared to wane and he got up and started to walk out of the door.

One of the staff called out: "Steven - come back. We haven't finished yet".

To which he replied: "Steven Neary can't play bingo. Steven Neary's not got a fish in his mouth".

Confusion all round........................

Story Thirty Eight - Happy Easter

The social worker had a very busy day on the day before good Friday 2010. She phoned me just before she left work for the long weekend to deliver the news. There were four things that I "needed" to be told.

I didn't realise that it was National Screw Your Clients Over Day.

1. She had informed both the DWP and Benefits Agency that Steven was now resident in the Unit. He would lose the care part of his DLA and his ESA would be reduced to just the "pocket money" rate.

2. She would be sending me out an invoice for charges for the Unit. Because Steven had now been there for three months, he was classified as "resident" and that entitled the council to charge Steven for the priviledge of being there.

3. She was cancelling our direct payments immediately. As above, Hillingdon's policy is that direct payments cease after three months of someone being in residential accomodation, regardless if there is still a need. So, she expected our trusty direct payment who had worked with Steven for over five years and whom Steven is very fond of, to leave without notice.

4. She was reducing the hours of the agency staff. She wanted to get the staff at the Unit more involved in Steven's activities. The reduction in their hours would start immediately and we'd review the situation after eight weeks.

It was horrendous but still brought out the good side in people. I knew we couldn't lose the direct payment worker. I had been having some extensive dental treatment at the time, so cancelled the treatment and paid him out of the money I'd saved up for the dental work. (I've never been able to afford to restart the treatment, so my mouth is still in the half finished state it was in back in April 2010). After I ran out of money, he worked voluntarily until my appeal was heard and the direct payments were reinstated. I remember the social worker's fury when she discovered the guy was willing to work for nothing. It was harder for the agency staff because the Unit wouldn't allow them to arrive early and that started a whole new chapter of "unknown antecedents" about bathing. Steven didn't like the female members of staff doing his bath but was powerless to do anything about it.

The appeal against the reduction to the DLA & ESA was eventually heard in August 2011 - after the court judgement. Although the tribunal accepted that Steven shouldn't have been in the Unit, they maintained that as he was there, they were entitled to reduce his benefits. He never got them back.

The invoices for the "residential charge" are still sitting in a drawer somewhere. Hillingdon continued to send them long after Steven eventually came home. The last one was for £5875. I still expect the bailiffs to turn up one day.

I can see that it was all part of the big plan - make it impossible for Steven to return home and in the meantime, create more of the double binds that Steven found so difficult. They would instigate a change to his routine that he would find hard to deal with. And then they would use his reaction as justification that he needed to be in the Unit.

Sunday, 20 April 2014

Story Thirty Seven - Unknown Antecedents

So - in the space of two weeks, Hillingdon had cancelled our holiday, stopped Steven's overnight visits home and revealed that they were planning on sending him to long term residential accommodation.

And yet we weren't allowed to have an emotional reaction to that news.

For months, the Unit had been sending me their logs of Steven's "challenging behaviour incidents". As you can imagine, this shot up over the two weeks of all the shattering news. But the majority of  incidents were classified as "unknown antecedents". I wrote back to the Unit, suggesting that perhaps, anger, upset, confusion or terror might be the antecedent but never got a response. They couldn't (or wouldn't) acknowledge that their decisions could in any way be affecting Steven.

I shouldn't have been surprised because that was the tone of the whole year. I never once saw a log that had the Unit take responsibility for any antecedent. It would have been nice occasionally to see something like: "We wanted to watch Wimbledon, so Steven couldn't watch Holby City", or, "We had prepared Steven for who would be on shift but at the last minute they went sick and we had to get a last minute unknown bank worker in", or, "Despite Steven asking for a male worker to do his bath, we decided he had to accept a multi gender environment and got a woman to apply his cream to his groin". Never.

But by this time (if ever) assessment had gone out of the window and they were just compiling evidence for their court application.

The manager's manager once told me that they work on the principle that "all challenging behaviour is designed to gain something". I wanted to punch him on the nose to gain a nanosecond of pleasure. But when everything is viewed through that prism, and a person's emotional life counts for nothing, then they are bound to come up with lots of "unknown antecedents".

Saturday, 19 April 2014

Story Thirty Six - 8th July

This was the worst day of the whole year.

I arrived home on 8th July to find a hand delivered letter on the mat. It was three weeks after the second DoL was authorised, two weeks after Hillingdon cancelled our holiday and two weeks since the final part of the fake transition home plan had started. Steven had been home for two overnight stays and was getting dead excited about the permanent return home, which we were both expecting to be in two weeks time.

This is the contents of the letter:

"The meeting made decisions that have immediate consequences and we need to ensure that you are aware of them. We decided that we can not support the long-term plan of Steven returning home to live with you on a permanent basis. We acknowledge that we have commenced this process but feel that we should let you know now that we are extremely uncomfortable with this plan and as the local authority responsible for commissioning support we can not knowingly continue to support a plan that we feel is too high a risk. Steven still presents high levels of risk to himself and others on a daily basis and our views are that this is likely to continue. As a consequence we are going to make changes in the current plan regarding Steven being in transition to your home. We want to be clear that we do not want to hinder contact between Steven and yourself ... We understand that this will cause you huge concern as you are dedicated to your son and his well-being and with this in mind we would like to hold a case conference and invite you to attend with someone to support you."

I threw up all over the living room floor. I tried to speak to my friend Val on the phone but couldn't talk for sobbing. I wanted a fight.

That night, I thought I was having a heart attack. I had never known pain like it. I called an ambulance and they ran full tests but it turned out to be a full scale panic attack. Nothing wrong with my heart except it was broken by this latest course of action by Hillingdon. Six months of lies to Steven and I but now the cat was out of the bag.

I blurted the whole story out to a lovely nurse, who cuddled me and said: "You've got to carry on. You've got no other choice".

That day was the turning point of the whole year. They had taken away our last bit of hope and when you have nothing left to lose, you can become quite dangerous. All that suppressed power comes back and twenty four hours after being wired up to a heart monitor, the Get Steven Home campaign was launched.

Story Thirty Five - Safeguards (3)

The second DoL was authorised in the middle of June 2010. Hillingdon had been really dragging their feet over the risk assessments that were a condition of the first DoL, so much so, that by the time the second one came round, only half of the risk assessments had been done. In hindsight, I can see that was intentional as there whole plan at this time was to delay having to reveal their hand.

It was an important time of the year for Steven. We were due to go on holiday two weeks after the DoL was due to be reviewed and that weekend also marked the start of the final phase of the fake transition home plan - Steven would be having an overnight stay at home for the first time since 30th December 2009.

All that was dashed (more over the next two blogs) but here is Justice Peter Jackson's summing up of the second best interest assessment:

  1. On 21 June, the second DOL standard authorisation was granted. A different best interests assessor (BIA2) consulted Mr Neary. He describes her telephoning him at lunchtime for 10 minutes, saying that she had to file her report by 3 p.m. He says that to every point he raised she replied "but Hillingdon say this ..." He did not consider that she was carrying out a proper or independent assessment and lodged a complaint about her.

  2. I have not heard evidence from BIA2, but I have read her assessment. She recommends a three month period for deprivation of liberty. Substantial parts of her short report are cut and pasted from the previous best interests report. She appears to have had cursory contact with Steven on 21 June, the date her report was filed (even though it is unaccountably signed on 18 June). No reference is made to his wishes and feelings. No reference is made to Mr Neary's opposition to the placement. On the contrary, the following appears: "I understand from my conversation with Mr M Neary that he believes the current care plan is positively supporting his son and his transitional programme." No reference is made to the possibility of a placement at home alleviating the need for a deprivation of liberty. The recommendation is made for two conditions to be attached, one of which suggests that the three outstanding risk assessments for Steven's activities should be completed within eight weeks (in the context of a three-month deprivation recommendation). No reference is made to the absence of an IMCA, despite the condition in the previous standard authorisation, nor to the Court of Protection, despite the references in the previous assessment. I regret to say that the report has all the hallmarks of a document completed in a hurry.

I have a David Icke theory about the second DoL. I don't think the BIA ever met Steven. I'm not sure there was even a BIA. I think it was someone in the positive behaviour unit or the social care team suddenly realised - "Shit - we need to renew this DoL or else his dad can take him home".

It still makes me so angry. That something so important as depriving a vulnerable person of their liberty should receive such pisspoor attention and time. They are meant to be "safeguards" for christsake but to Hillingdon they meant nothing more than a 10 minute phone call and a hastily written report in blue felt pen.


Thursday, 17 April 2014

Story Thirty Four - Safeguards (2)

I appealed the first Deprivation of Liberty Authorisation. In two weeks, I read all I could find on the safeguards and already had an inkling that the authorisation may be unlawful. I wanted to achieve two things from the appeal - get the authorisation lifted and get Steven home.

The cast list at the meeting was:
The social worker
The social worker's manager
The social worker's manager's manager
The Unit's manager
The Unit's manager's manager
The Head of Safeguarding ( he turned out to be the person who signed the orders)
The best interest assessor
Someone from their legal team
A legal secretary (taking the minutes)
Me and my friend, Mary

Justice Jackson analysed the meeting and declared "nothing whatever was achieved". The chair of the meeting kept saying "we are acting legally on everyone's behalf". Everyone?

By this time, they had stopped all Steven's outside activities pending their never ending risk assessments. As we later found out, this was just a stalling tactic. I pleaded with them for some crumbs, like letting Steven go to the Mencap pool, where we'd never had a problem in the last 10 years. It was refused.

The social worker and the Unit manager, who had been my only contact points up until then, were strangely quiet. But Mary counted them saying 7 times - "where does this leave Hillingdon?"

Mary and I went for a drink afterwards and I asked her for one adjective to describe them. She said "frightened". We couldn't work out what they were frightened about. So we got pissed instead.

Wednesday, 16 April 2014

Story Thirty Three - Safeguards (1)

I'd never heard of the deprivation of liberty safeguards before April 2010.

One Sunday afternoon, a few days after the professionals' meeting had decided that Steven would never be allowed home, Steven escaped from the Unit. He got out the front gate, onto the main road and met a passing vicar. At some point, he took the vicar's glasses off and threw them into the road. He then darted over to the other side of the road. At this point, the staff noticed he was missing and took him back.

The following day I was contacted by the Unit manager who told me they were applying for an urgent 7 day authorisation and would be stopping all Steven's activities until new risk assessments had been done.

Straight away, the huge DoL juggernaut clunked into motion. Steven was prevented from leaving the home, having to make do with mopping the floor and walking round the garden as his daily activities. It took nearly four months for all the risk assessments to be done and his activities reinstated.

During that week, I was contacted by a best interests assessor and we spoke for about 20 minutes on the phone. I was confused. I was still being led to believe that the fake transition home plan was genuine, so I didn't put up too many objections to the DoL. I didn't relaise that the DoL was being used to achor Steven to the Unit and being used as extra leverage to move him out of the borough.

"Safeguards" sounded good but the actual reality felt awful.

Needless to say, the supervisory body authorised the first DoL for two months and that was the start of our long DoL adventure that carried on until December 21st 2010, when the judge decided that the authorisations had been illegal.

To be continued.......

Tuesday, 15 April 2014

Story Thirty Two - Article 8

I'm handing today's blog over to Justice Peter Jackson. For two reasons. Firstly, I didn't realise how upset I would get writing yesterday's blog. You see - I had forgotten about Danny. When Steve first came home, I used to think about him all the time. But it's three years on now and I'm ashamed to say, I don't think about him so much. That upsets me. The second reason is that I'm about to enter into the DoLs period, so the next few posts will all be about how the Safeguards were abused and the dreadful consequences for Steven of that abuse.

Before then though, Justice Jackson ruled that Hillingdon had breached Steven's Article 8 human rights (the right to a family life). Here's how he reached that conclusion:

"The mere fact that a local authority's view of best interests is not subsequently upheld by a court does not of course show that Article 8 rights have been infringed. However, in the present case, a number of features collectively persuade me that Steven's right to respect for his family life was breached.

(1) Hillingdon approached matters without any proper regard to the principle set out in the previous paragraph. Nowhere in their very full records of Steven's year in care is there any mention of the supposition that he should be at home, other things being equal, or the disadvantages to him of living away from his family, still less an attempt to weigh those disadvantages against the supposed advantages of care elsewhere. No acknowledgement ever appears of the unique bond between Steven and his father, or of the priceless importance to a dependent person of the personal element in care by a parent rather than a stranger, however committed. No attempt was made at the outset to carry out a genuinely balanced best interests assessment, nor was one attempted subsequently. The first best interests assessment that deserves the name is the IMCA report of 18 November 2010.

(2) Hillingdon's approach was calculated to prevent proper scrutiny of the situation it had created. In the weeks after Steven's admission, it successfully overbore Mr Neary's opposition. It did not seriously listen to his objections and the suggestion that it might withdraw its support for Steven at home was always likely to have a chilling effect. Once Mr Neary's resistance was tamed, the question of whether Steven was in the right place did not come under any balanced assessment.

(3) Between April and July 2010 Hillingdon pursued two inconsistent agendas. The professionals were opposed to Steven returning home, whether or not a final decision had been taken. The agenda so far as Steven and Mr Neary were concerned was a return home under the transition plan. It was only when the transition plan was about to lead to an actual return home that the pursuit of two agendas became unfeasible and the true view of the professionals was disclosed. The records show that the professionals were at times uneasy about this lack of frankness, but it happened nonetheless.

(4) The use of DOL authorisations from April to December 2010 as a means of controlling Steven's activities was not justified on the information available to Hillingdon. As a direct result of an incident when he had not been adequately supervised, he was deprived of activities that are important to him for weeks and in some cases months, and he was prevented from going on holiday.

(5) Even in July 2010, when the cat of Hillingdon's thinking was out of the bag, it took almost 4 months for an application to court to be issued, with Steven remaining at the support unit in the meantime.

(6) Although Hillingdon has accepted and supported Steven's placement at home since the receipt of the experts' reports in February/March of this year, the application it presented in December 2010 and pursued up to the hearing in May 2011 has contained no concessions to Mr Neary's concerns and no acceptance of any shortcomings whatever in relation to past events. Such concessions as were made emerged in cross-examination. Regrets were expressed, but no apology has so far been made to Mr Neary or to Steven.

(7) On 20 May 2011, the eve of the hearing, Hillingdon circulated a three-page media briefing note to most of the national media. The document was designed to counteract adverse publicity that Hillingdon has received, and against which it had not attempted to defend itself. Nonetheless, it is a sorry document, full of contentious and inaccurate information, and creating a particularly unfair and negative picture of Steven and his behaviour. I learned about the document by chance on the last day of the hearing, expressed dismay, and asked for an explanation. I am told that it was authorised by the Director of Social Care, the Head of Corporate Communications and the Borough Solicitor. It is now accepted "in hindsight" that an error of judgment was made in issuing the briefing note. That is indeed so, though again hindsight has nothing do with it. In addition, Hillingdon has unreservedly apologised to the court. That courtesy is appreciated, although an apology for the document is in truth not owed to the court but to Steven and his father.

I also note that Hillingdon has done its best to undo the situation by contacting every recipient informing them that I had directed that no part of it should be published in any circumstances. Again, I appreciate the intention behind this, but I should make clear that I gave no such direction. The only control that this court has exercised over reporting about Steven is in the form of the very minor restrictions on the reporting of the hearing itself, as referred to above. Other than that, the media will cover the story in whatever way it chooses, and no doubt it will continue to respect Steven's need to be left in peace, as it has done since the hearing in February."

Monday, 14 April 2014

Story Thirty One - Westlife

Steven made a good friend in his time in the Unit. I suspect it was fairly one way but Steven really liked this dude. Inevitably they bonded over music. He introduced Steven to Amy Winehouse and The Coral.

When it was Steven's birthday, this guy (we'll call him Danny) took charge of the party preparations. He spent all day blowing up balloons and when it came to the party, he insisted that everyone wear a tie for the occasion.

The one blemish on his cool count was his love of Westlife. One day I visited Steven and Danny was in his room with music blaring out. I counted him playing "If I Let You Go" 24 times on a loop. I asked him once why he liked Westlife so much and he told me that Kian Egan had a great black jacket. Fair enough.

One day he wasn't around and I asked where he'd gone. He was being held in the police station. the night before, he'd kicked a member of staff's car and she called the police. It was quite late at night and he had to stay on his own in a cell overnight. My guess was that she got the police involved for the insurance but it seemed very excessive to me. Steven spent an anxious few hours, fearing that Danny would be sent to jail "forever and ever".

Danny left the Unit a few weeks before Steven came home. I asked whether they could keep in touch but was told that was not possible. I had a naive fantasy that perhaps they could visit each other and sing Flying Without Wings to their hearts content. I think they would have both liked that. Steven wasn't allowed to keep in contact because of "confidentiality" reasons. I asked the Unit to pass on our number in case Danny wanted to get in touch but I don't believed they ever told him.

About a year after Steven came home, I was in the Civic Centre one day and there was Danny, waiting in reception. he was with a support worker who didn't look at me the whole time we chatted. I asked Danny how he was doing:

"Fucking shit, Steven Neary's Dad. It's a horrible place. Can I come and live with you?" He told me that he had been moved to the other side of London and was visiting today to see if he could get a move back to Hillingdon.

I wanted to whisk him off straight away. But at that moment, the social worker arrived (Steven and Danny had the same social worker) and led him off, not acknowledging me or the fact we were having a conversation at all. She's got a good track record of moving people miles away from their homes.

We never saw Danny again. But everytime we play a Westlife song, Steven talks about "my good friend Danny".

Story Thirty - More Spin

Here's another example of the dreadful spin that Hillingdon used to demonise Steven, from their court statement:

"Whilst being supported to participate in community activities, a number of incidents drew attention to members of the public. These included an incident in a local post office that resulted in a member of the public felt inclined to call the police. This incident placed the support workers in a vulnerable position and the involvement of the police increased Steven's already high levels of anxiety".

What on earth did Steven do that day in the post office?

Remember the shift leader who sent Steven and the support workers on the "task completion" trip to the chemist. Well, on this particular day she sent them to the post office to get some milk for the unit. She also gave the support workers strict instructions that Steven mustn't get anything for himself whilst he was there.

So, they got to the shop and Steven wanted some crisps. Abiding my orders, the support workers tried to get him out of the shop without crisps. There were three very drunk people outside the shop, who got it into their heads that the support workers were kidnapping Steven. They tried to pull Steven away from his support workers and one of them called the police.

The guys managed to release themselves and started to walk back to the Unit. Steven was still screaming. The three drunks followed them all the way down the road and kept trying to pull Steven away. One of the support workers phoned the Unit for assistance but nobody answered the phone.

They got back to the Unit but two of the drunks blocked the gate. No staff from the Unit came out to help. The support worker phoned his manager, who drove over quickly to intervene.

How I have presented it here was exactly how the story was told to me at the time by both the support workers and the Unit manager. However, when the same story appeared in their court statement 10 months later, the emphasis became that Steven caused the incident by his challenging behaviour. After a couple of months, all ideas of support went out of the window and Hillingdon turned into litigation mode.

Where is Steven in that story?

Saturday, 12 April 2014

Story Twenty Nine - Naughty Feet

Steven learnt a new phrase when he was in the Unit . "Steven - BEHAVE".
Whatever he was doing at the time, the barking order had the desired effect because it used to send Steven off into hysterics. Nobody at the Unit could understand why. They should have asked me. But then again, they weren't interested in answers - they were in full on litigation mode by now.
Why did it strike Steven as so funny? There's a line in Grease where at the High School dance and the secretary, a little pissed, grabs Sonny and starts dancing. Her accompanying line is: "When I hear music I just can't make my feet behave". This always sets Steven off - "Dad - lady's got naughty feet".
But now, I've also got him to understand what it really means and he uses it in its proper context as well, even though he's creased up when he says it.
Earlier today, Steven was playing some music DVDs. I could hear him dancing but pissing himself laughing at the same time. I went downstairs and he said: "Dad - I've got naughty feet - like at M House"
Have a watch. I defy anyone not to have naughty feet as they listen to this track

Friday, 11 April 2014

Story Twenty Eight - Partnership Working

Extract from the Unit's brochure, advertising its services:

"We work in partnership with families to achieve the best possible, person centred outcomes for......."

Action points from professionals' meeting of 8th April 2010:

1. Steven will not be allowed to return home to either parent.
2. LA to look for long term residential placement.
3. Mr Neary must not be told of this.

Even if you are able to decode the awful spin of the first statement, you don't expect the reality to be the lies and deception of the second statement.

Thursday, 10 April 2014

Story Twenty Seven - Return of the SALT

I wrote in the Toasted Cheese Sandwich story about our first encounter with the SALT. She made another appearance in our lives and once again, the results backfire spectacularly.

Steven had been going to Flex gym for several years and had a one to one circuit session with his personal trainer, Adam. They had a great relationship.

Steven had a self created set routine each week that he always followed. Upon arrival at the gym, he would chat to the wheel clamper and stroke his beard, go and get changed, then point at name all the gym members on the gallery wall. Adam would arrive and they would do 15 minutes on the rowing machine, a circuit of all the weights, a game of football and a fast game of catch. It worked like a dream the vast majority of weeks.

The SALT had examined this routine and decided that one potential problem with it was that Steven may get agitated if someone was using one of the machines he was due to use and his sequence around the machines would be broken.  It was a fair point, although I couldn't remember an example of when it had caused a problem.

Anyway, one day she turned up (with the assistant manager of the Unit and a student care worker) right in the middle of Steven doing his naming the members part of his routine. The SALT had produced a symbol card, with pictures of each of the equipment in the gym. Her plan was that before Steven used a piece of equipment, he put up the symbol for that exercise and then remove it before moving on to do his next set.

Steven became very agitated because his normal routine was in tatters. Over 20 times, he pleaded - "want Sally to go" but she stayed put, determined to introduce her programme. Adam arrived and stood by helplessly in what, was after all, his arena. Eventually the inevitable happened - Steven was screaming and hit me across the chest. The SALT and the assistant manager left at that point. Adam said that they had succeeded in what they set out to achieve.

A week later I saw the logging of that incident. It was classified as "Intolerable high risk" as it was in a public place and a member of the public could have been at risk from Steven's aggression.

More risk assessments needed.

#107days #justiceforLB

Wednesday, 9 April 2014

Story Twenty Six - A Good Relationship

Here's what Justice Peter Jackson had to say about the Unit manager's evidence in court:

  1. "The unit manager explained that the support unit is only one part of the overall service, which includes a day assessment service and an outreach service, which Steven has used. He spoke of having a good relationship and ongoing communication with Mr Neary. He described the need to be continuously aware of Steven, who is demanding to care for. He described the transitional plan, which was only terminated on 7 July. He accepted that Steven always wanted to be in Uxbridge with his father, although not all his statements are to be taken literally. He described Steven as having some good times at the support unit, with lots of fun and interaction with the staff.

    The manager accepted that there was no baseline for Steven's admission in 2010. There was no opening agreement and no formal best interests assessment. He explained the differences between the regime before and after April. He accepted that there was confusion about the direction of planning. Hillingdon was not sure what its plan was, and Mr Neary did not know what had been discussed. "
How could the manager say that he has a good relationship with me and good ongoing communication? He lied to me and Steven about the fake transition home plan for six months. We trusted that what he was telling us was the truth because we had no reason to believe otherwise. In that six months, I must have had dozens of conversations with him and not once did he tell me the truth about Hillingdon's real plans for Steven.

That's not the basis for a "good relationship and ongoing communication" to me.

Tuesday, 8 April 2014

Story Twenty Five - Lizzie & Eunice

Compare and contrast.

I really liked Lizzie. She was a heck of a worker. In the many times I visited Steven in the Unit, I never saw her once sitting down doing nothing. She really took the time to try and get to know the guys in the Unit. She was always a bit perplexed by Steven's musical tastes and anything pre-1985 was a mystery to her. She asked me once who Gene Pitney was and "did I have her CD?" I asked Steven about it and he rolled his eyes and said "Lizzie doesn't know the words to 24 Hours To Tulsa" (Not to be confused with the Chas 'n Dave song - 24 Hours To Tulse Hill).

But Steven and Lizzie bonded over Copacabana. Lizzie played the part of Lola (who was a showgirl) and Steven was Rico (who wore a diamond). She even took Steven to see the show when it was on at our local theatre.

If there was smeared shit to be cleaned up, Lizzie would be into her apron and rubber gloves in a jiffy and just got on with it.

I've mentioned Eunice in an earlier story ("Window"). She was the woman who broke the window in an argument with a fellow worker. I never once saw Eunice in an apron or rubber gloves. Apart from the times she was in the kitchen, she was always sitting in the main lounge, thumbing through the Argos catalogue. I remarked on this one day to one of Steven's support workers, who replied - "Yes. She seems to be in a permanent state of lawn mower buying". This made me laugh out loud but it was awkward as she was the only other person in the room, so it obvious the joke was about her.

Apart from the window story, Steven has never ever told me a Eunice story, so I guess that sums up the interactions she had with him.

As is the fate of these working dynamics, Eunice was often asked to step up and be team leader if any of the regulars were off. Lizzie wasn't.

#107days #justiceforLB

Story Twenty Four - "Friends"

One story sums up for me, the social care teams' dismissive attitude to Steven's normal home life.

When they submitted their papers for court, the social worker's manager (in the social worker's absence) wrote a paragraph about the council's "care plan" for Steven. This covered their plan to move Steven, under section, to a hospital in Wales and included the proposal that his contact with me, could be via "a webcam facility".

In the next paragraph, he turned his attention on me:

"Mr Neary senior has been wholly un-cooperative with our plan. Instead he has chosen to focus on the loss Steven will experience of his family, his support workers and his 'friends'".

When I read this statement, I went ballistic but sobbed myself senseless as well. Note that the word friends is in inverted commas.

Steven Neary has FRIENDS? Ha Ha!

It was so mocking and contemptuous that I made Amanda, our barrister, promise that she would slaughter him over it if she got him into the witness box.

In one sentence, it tells us everything we need to know about the social care team's attitude to family and friends. But more importantly, their view about the person they are charged with the care of. By inserting inverted commas around friends, he revealed the belief that the idea that Steven might have friendships that he values, as laughable.


#107days #justiceforLB

Monday, 7 April 2014

Story Twenty Three - The Duke

One of Steven's long term workers called Steven "The Duke of Uxbridge".

Steven loved that. And everytime they greeted each other, they sang a quick burst of:

"Duke, Duke, Duke, Duke of Uxbridge......."

When the cat was out of Hillingdon's bag and we knew that they had no plans to let Steven come home, the support worker was called into the office one day and told that Steven may get upset and confused by the song as he won't be returning to Uxbridge. Seriously. The Unit were seriously screwing him over every day but one song had become a no-no.

Did it work? Of course bloody not. They still sing it today, except Steven has become the Duke of Cowley.

Darts have been good for Steven. They taught him that a black woman can marry a white man. I told him the story of seeing Darts at the Palladium in 1979 and Den Hegarty falling from the Royal Box, so Steven now knows that you don't climb when you're in the theatre. And he once told a man at the bus stop that "Mark Neary thinks Griff Fender is a very cool dude"

Anyway, let's forget those bastards in the Unit and have a sing song:

Sunday, 6 April 2014

Story Twenty Two - 22

I've been looking forward to this post. 22 is Steven's favourite number.

22 boxes in Deal or No Deal

Manuel took 22 rolls of toilet paper up to Mrs Richards's room in Fawlty Towers.

Steven changes the words of 10 Green Bottles to "22 Take That Songs" and we sing a line for each of their hits.

Coincidentally, day 22 of Steven's time in the Unit was the second time in those first few weeks that I got blocked from speaking to the outside world. I chronicled earlier, the story of how the social worker stopped me from speaking to the regular support workers.

On day 22, Steven had an appointment with the psychiatrist. I hadn't been allowed to speak to Steven up until then, so I was determined to go to the appointment. I wanted to let the psychiatrist know what had happened and hoped that his experience of Steven would make the social worker and the Unit see sense.

I arrived half an hour early for the appointment. After just five minutes of waiting outside the hospital, Steven, the Unit manager and two Unit staff emerged from inside it. They had brought the appointment forward but not told me. In 22 days, I was no longer able to speak to the doctor I had known for about 5 years.

They stitched things up very nicely at that appointment. It wasn't until the Court case 11 months later that I saw that the psychiatrist had been told that the reason Steven was in the Unit was because I couldn't cope with his behaviour.

It's very hard to convince someone nearly a year later that wasn't the case at all.

#107days #justiceforLB

Saturday, 5 April 2014

Story Twenty One - Morrissey

I'd forgotten this story. Steven reminded me of it this afternoon during one of our marathon Saturday afternoon tape sessions.

I remember at the time, Steven's normal support worker was furious at the attitude of the staff at the Unit but was impressed with Steven's way of averting a meltdown.

It was June 2010. The Unit were still persisting with their use of the Timer. Steven was having to use it everyday in order for him to watch Countdown. One of the staff would set the Timer about 2.30 and Steven would sit and watch it intently for the next hour until his programme started.

This particular day was during the 2010 World Cup. And 10 minutes before Countdown was due to start, one of the Unit staff changed channels as the staff wanted to watch the Italy match. Steven got up and changed the channel back to 4. One of the staff took the remote control off Steven and put the football back on. This went on for about five minutes, with Steven getting more and more worked up, until he eventually burst into tears. A couple of the staff thought this was very amusing and started to mock Steven.

One of them said: "Oh look. The little baby's miserable now".

Steven perked up.

"Miserable. Like Morrissey".

Blank response

"Like Hang the DJ".

Blank response

"Like Charlie Hawtrey".

Steven's lateral thinking was getting in the way of them watching the match.

"Shut up Steven".

"Miserable. Like 4 men Smiths".

Steven was sent to his room until the match finished. The log recorded, Steven's behaviour being "especially challenging this afternoon" but no mention of Countdown or Morrissey.

#107days #justiceforLB

Friday, 4 April 2014

Story Twenty - Lavender

The Unit grew a whole list of "behaviours" they deemed "inappropriate" and needed stamping out.

One that I had a big problem with was over Steven smelling hair. He only ever does it with two people - me and his long term support worker.

Ever since Steven was tiny, he greets me with a handshake and then smells and kisses my head. It has always felt to me to be a genuine show of affection. A moment of intimacy. Is that wrong? Is it inappropriate?

The same with Chris, his support worker. I remember how it started with Chris. Steven had been doing "smells" at school and got very excited one day that Chris's shampoo smelt of lavender - one of the smells he had learned at school that day. Ever since, Steven greets Chris with a quick sniff and says "lavender".

Like most things at the Unit, Steven was passed through a judgemental filter - an appropriateness panel. And the outcome can only be one thing when a group of people exercise such power - Steven would have to stop doing something that was important to him.

Thursday, 3 April 2014

Story Nineteen - Holiday

I booked our annual holiday in February 2010, expecting Steven to be home long before then. We have had a holiday every year since Steven was a nipper and it is one of the hightlights of his year. It didn't occur to me that the holiday would be a problem.

By the time the holiday was due (we were due to go on 5th July), Steven was now on his second Deprivation of Liberty authorisation.

Two weeks before the holiday I was visited by the social worker and the Unit manager. They asked me to read a letter.

This is how the judge describes that event in his final judgement:

"Two days later, on 23 June, and after much consultation had taken place in the previous weeks between the social worker, the team leader and the service manager, the unit manager wrote to Mr Neary saying that Hillingdon could not support Steven's holiday on 5 July. The reason given was because the support unit had responsibility under the DOL "order" to assess Steven's access to the community, and because "Whilst we are in the process of transition with Steven to the family home, I feel we will be placing Steven and others at risk ..." Mr Neary was understandably downcast at the lateness of this decision, which he felt would disappoint Steven, who had been looking forward to the holiday. Workers at the support unit did not feel that this was so. Nevertheless, one of the problems for Hillingdon by this stage was that Steven was becoming excited by his visits home, in accordance with the transition plan. At this stage, 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."

The letter was interesting. Don't forget, the "transition home plan" was one great big lie but was still being used to keep us quiet. 

We did eventually get to Somerset, the year Steven came home but he is still confused about why he never had a holiday that year. He regularly runs through the venues of all our holidays and pauses when he gets to 2010. He throws his arms open wide and says:

"Steven Neary couldn't go to Somerset when he was in M House cos Steven Neary threw a glass of apple juice over A".

Classy behaviour from the Unit.

#107days #justiceforLB

Story Eighteen - Vamping

Steven has signature tunes for most people. Some are blindingly obvious. Some are him trying to convey a message to the other person. Some need so much de-coding you can feel your brain start to frazzle. They all make sense in a special Steven logic.

So when he greets someone, he'll shake their hand and sing their own special song.

One day at the Unit, one of the staff came up to me and said that everytime he clocks on shift, Steven comes up to him and starts singing:

"My heart starts missing a beat.
My heart starts missing a beat.

"Oh, that's a Pet Shop Boys song" I replied, "I'll check out with Steven why that's become your song".

Later, I asked Steven -

"Cos, he looks a bit like Dracula".

Awkward moment. The guy was waiting for me to feedback the meaning behind the serenade. How do you tell someone that Steven reckons he resembles Dracula. I bottled out and told him he looked like a character in a Pet Shop Boys video.

Take a look at the video. Would you want your personal care done by this man.......?

Tuesday, 1 April 2014

Story Seventeen - Something or Other

At the end of February 2010, after Steven had been in the Unit 8 weeks, I wrote to the social worker and asked her to look into the matter of Steven's clothes. They were either disappearing, being shrunk in the industrial washing machine or being ripped by one of the other residents.

I got no direct reply but here is the infamous email that she sent to other staff on Steven's case:

"There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven's, however I want Steven to remain at [the support unit]. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven."

This is what the judge had to say about the email:

"It is now accepted by Hillingdon that Mr Neary had done nothing to deserve this disrespect. The unfortunate tone of the message demonstrates that even at this stage the expression "working together" did not include working together with Steven's father in the true sense and that Hillingdon's thinking had by this stage become adversarial. Worse, the professional view was withheld from Mr Neary, perhaps because revealing it would have provoked a renewed challenge. In the meantime, a "transition plan", ostensibly leading towards a return home, was put into place. It started on 4 March, with four phases: (1) 4/6 weeks of return home on Monday afternoons, (2) 4/6 weeks of return home on Monday and Tuesday afternoons, (3) the above plus Saturday afternoons at home, (4) the above plus a couple of overnight stays before a final return home. It was not until 8 July, by which time the four phases had been successfully accomplished, that Hillingdon told Mr Neary that it was not willing to return Steven to his care."

I'm glad the judge recognised this. I'm delighted that this part of the judgement is now regularly used on social worker training courses as an example of how not to do it.

But it is the perfect example of the nonsense of the claim that "we work in partnership with families". Like LB's time in STAT, we were sidelined as a family. I was seen, at best as a nuisance, obstructing Hillingdon's plans. At worst, I was lied to, just so that the professionals could get their own way.