Monday, 30 June 2014

Story One Hundred & Four - The Impact on Steven

I can't imagine what it must be like to be kept away from your home, your family, your routines and all the things that help you feel safe for a whole year. And worse, to be held in a place where you feel unsafe and where nobody is interested in you as a person.

I am so proud of Steven's stoicism. To see him still trust people, leaves me in awe.

But there is definitely some trauma after the experience and I cannot forgive Hillingdon for not only causing it, but for repeatedly dismissing it since Steven came home. It is the main reason why I stopped attending meetings with Hillingdon's professional support team (positive behaviour support, the psychologist, the SALT, the OT) back in 2012. If they couldn't acknowledge the reality of Steven's trauma, then they couldn't be any use at all.

Steven is still terrified of being taken away again. He never understood why he was there, so even know, if he spills a drink, he cries and pleads: "not going back to M house?" Everyday, before he goes out, we have to reassure him that he's coming back home afterwards and not going to the Unit. If anyone mentions the name of the Unit, he yelps and starts to cry with anxiety. When we drive pass the place on the way to swimming, he turns away, closes his eyes and covers his ears. But that's not trauma!

He has never gone back to the respite unit either - it strikes the same level of terror. I don't blame him. It took a year after Steven came home for respite to be sorted because Hillingdon insisted the Unit was their only resource so had to be there. To illustrate the way their positive behaviour support works, they introduced "subliminal messaging" with him to get him to accept their plan for him to go back there for respite. It didn't work - Steven is far too fly for that.

I think those fears he has will be there for a long time to come. And they'll resurface when I'm no longer around to look out for him. But in the meantime, I believe Steven has the emotional fortitude to have a quality of life that is beyond the imagination of anyone involved in his care in 2010

Sunday, 29 June 2014

Story One Hundred & Three - Goodbye Whistler's Mother

The social worker (aka Whistler's Mother) finally left our lives in July 2011. We first met her in November 2007 when she was appointed Steven's transition manager. Its fair to say that it was four and a half years of carnage.

I remember the first meeting well. After meeting Steven just once, she was pushing for him to go to the positive behaviour unit. She talked about one of Steven's classmates who had recently been in the Unit and described it as "one of my big successes". Not " our" success, or "the units" success, but "my" success. I said to Julie after she left that we are dealing with a massive ego here. And I think its fair to say that her narcissism was the driver for many things that happened over the next four years.

In 2008 after Steven had been assaulted at the Unit by one of the staff, she tried to cover it up by leading us to believe it was one of the residents. From the time of the assault until the trial, she distanced herself and was no support whatsoever.

In May 2009 she visited me and told me that she would be taking Steven into care if Julie and I stayed together. It is true that Julie's mental health problems were causing lots of problems with Steven's care, but is it okay for a social worker to deliver that sort of ultimatum. I had to make the most dreadful choice and that is how Steven and I came to move to the flat in Uxbridge. I think the consequences of the social worker's ultimatum continued right up to Julie's death last month - she never got over losing her family.

And then of course, five months after Steven and I moved to Uxbridge, the social worker was the driving force behind the whole year that Steven was kept away from his home. Once again, I believe her ego played a big part in how the year unfurled. I could see that she couldn't stand me because I challenged her authority, which was very important to her. I didn't, and couldn't acknowledge her brilliance. The longer the year went on, the more entrenched and angry she became.

She managed to avoid both the initial December court hearing and the week long inquiry. I could see that Hillingdon didn't dare let her loose in the witness box but I also found it terribly weak that she couldn't face the consequences of her actions.

We now have a new social worker who couldn't be more different. She is down to earth and she is interested in Steven. She is prepared to fight his corner and I think she respects me. I said to her the other week that if we'd had her from the start, the events of 2010 would never have happened.

I bump into Whistler's Mother occasionally. We don't talk. I was in a pub with the H Man last year and we saw her sitting in an alcove with some colleagues. Next to her was a shelf with a large candelabra on. As we were leaving, the H Man said: "It was Colonel Neary, in the Slug & Lettuce, with the candlestick".

But I still find myself asking - " how can one person tear a family apart, leave a vulnerable young man traumatised, act unlawfully (as the court judged) and not have any consequences?"

Saturday, 28 June 2014

Story One Hundred & Two - Somerset

Two weeks after Justice Peter Jackson handed down his judgement, we finally got to Somerset, albeit a year late. I like the symmetry of that because, as you may remember, two weeks before we were due to go to Somerset in 2010, I had that horrible visit from the Unit manager who told me that he was cancelling the holiday.

On the second night there, Francis and Chris took Steven to see a Wurzels tribute band (yes really) and I sat outside the caravan on a sun lounger and wrote the final chapter of the book. Here it is:

Four Go For A Final Chapter In Somerset

It’s 12th July 2011 and I’m writing this final chapter, sitting outside a caravan in Brean Sands whilst Steven has gone to the evening show with his support workers. Yes – we made it to Somerset. It might be a year late but it feels great to have eventually arrived. There is something poetic that Steven’s two support workers, F & C, who gave evidence in court have come with us and it’s all very relaxed, and dare I say it, dead normal. We packed a lot into the first day: we went to the pool and down the water slide three times; we explored the theme park and last night we drove into Burnham. That was a poignant journey, as it was the venue for our first holiday with Steven in 1997. It was an odd feeling, because although this book has been about an 18 month period that felt like 14 years; the 14 years since our first holiday have flown by as quickly as 18 months. Steven and I marked the occasion by recreating the Beautiful South video to “Perfect 10” on the pier and I found the cafe where we used to have lunch every day in 1997. Sadly, it was closed because of an “electrical fault” but that was okay because Steven doesn’t do sentimental nostalgia.

The site we’re staying at in Brean is the same place we came to in 2007 and everything looks the same four years on. I was recalling to the support workers that there were many times in 2007 that I took Steven to the pool or to the show on my own, without incident. One of the workers remarked how much Steven has changed in that four years. He was of course, referring to Steven’s behaviour. It wasn’t an unfair comment, considering there were three of us supporting Steven on the holiday, all following the “risk management” bible. When he said it though, both me and the other support worker immediately said: “No – he hasn’t changed at all”.

That thought kept me awake last night. The only thing that has changed is that Steven turned 18 and moved under the watchful, fearful eye of the Hillingdon adult social care team. And because of the unfortunate incident at the airport in 2008, he will remain stigmatised for the rest of his life. It’s chilling that, in asking for some help four years ago, we have changed our perception of our reality and doubt things that don’t need doubting.

And in the middle of my reality is Steven. He has matured greatly in the last four years. But he is still the same funny, anxious, inquisitive, chatty, frightened, adventurous, playful, intelligent, street-wise autistic young man who sat next to me on the log flume in 2007 (Holiday song: “Umbrella” by Rhianna). He has the most formidable spirit and strength that kept him going last year when it must have felt like everyone, including me, had given up on him. Observing him on holiday, thoroughly enjoying himself, trusting us and going about his holiday business with absolutely no challenging behaviour whatsoever, makes me proud and hopeful for his future.

Our idea of our reality has been stretched to near breaking point at times since 2007, but thank goodness for love and the deep bond that comes with a special knowledge of each other. That can never be taken away and that’s why we are going to be okay.

Friday, 27 June 2014

Story One Hundred & One - The Media

On walking out of the refined world of the courtroom, I was met with television cameras rolling and cameras clicking.

I was led on to the steps of the court and all the journalists and ITV started firing questions at me. I rambled on and suddenly noticed someone walking into camera shot. It turned out to be Linda Saunders, Hillingdon's head of adult social care. She shook my hand and launched into a statement, that quite frankly, I didn't catch a word of. Later I discovered it was the official apology. And then she was gone. One of the journalists whispered to me: "she tried to do you up like a kipper there". But I wasn't bothered. Next ITN whisked me off to a side street for an interview and I was pleased that when it was aired, Liz Wickham picked up on that key statement about Steven facing a life in care that he does not want or does not need.

When I arrived back at court, my old mate Kurt Bahling was waiting for me and we went to the Embankment for an interview. The bastard made me cry on camera as he asked me my thoughts about the judge's testimony of me. Kurt is a good man and when we parted he promised to stay in touch (which he has). Then it was into the BBC studios inside the court to talk to Victoria Derbyshire, who like Kurt, had followed our story from the start.

That evening whilst I was cooking Steven's tea, I was doorstepped by the Daily Mail. She wouldn't leave and it set Steven off as I burned his chicken goujons. I panicked over how she might report the meltdown she'd just witnessed.

The next day I got up early to do the weekly shop and picked up all the papers. The Independent really went to town. We were on the front page with the headline " The Right To Love" and there was a double page spread inside which included the interview I gave to Jerome Taylor. All the other broadsheets covered the story in depth and the Mail ran a story called: "The State Stole My Son". Much to Steven's disgust I turned down an interview on Daybreak (it would have been too early and I'd run out of support hours. I didn't think Hillingdon would have appreciated me requesting more support, so I could go and talk about them on national TV). Steven was impressed that I did the Gaby Roslin show, although he expected Chris Evans to still be working alongside her.

The Winterbourne View scandal broke about this time and I was invited onto You and Yours to discuss our case. One of the mothers from Winterbourne phoned in and we had a very moving chat for a few minutes.

For the next two weeks, I was being invited to tell the story here, there and everywhere. I was cautious though because I know how much the stability of Steven's home life had impressed Justice Jackson. Even though, I was seeing how important and far reaching our story was, I didn't want to jeopardise Steven's routines, so I turned down more than I accepted.

I had also been writing the book for the past three months and the final chapters, like the hearing, were being written in real time. But I knew I had one more chapter to write before the book could be published................

This is the photo that appeared on the front page of The Independent under the title - "The Right To Love"

Thursday, 26 June 2014

Story One Hundred - Verdict

Two weeks later, I was back on the front row of the benches to hear Justice Peter Jackson deliver his judgement. Once again, I found it a very emotional moment. Early on in his judgement he mentioned Magna Carta and a huge tsunami welled up as my 800 year old history tumbled out. It is very trippy to travel 800 years in the space of two minutes.

I'm handing this post over to Justice Jackson as (IMO) he got the judgement spot on. He found that Hillingdon had acted unlawfully and deprived Steven of his Article 5 & 8 Human Rights and that all four DoLs were illegal.

Here are some of the highlights:
  1. In this case a local authority accepted a young man with disabilities into respite care for a few days at the request of his father and then kept him there for a year. The question is whether this was lawful. 
  1. Steven Neary is 21. He has childhood autism and a severe learning disability. He is a tall, heavily-built young man who requires supervision and support at all times. He needs things to be predictable and becomes highly anxious if he is not carefully prepared for change of any kind. His life is structured around his home, with reassuring daily routines and rituals and a weekly diary of outings to swimming pools, the gym or a day centre.
  1. I want to thank Mr Neary for the quiet way in which he has presented his case. Several times, both during his evidence and when acting as advocate, he had the opportunity to vent grievances or launch an attack on Hillingdon in the presence of the media, but he did not do so. I am sure that this is because his focus has been on Steven from beginning to end. Mr Mark Neary is an unusual man and he can be proud of the way in which he has stood up for his son's interests.
  2. For the reasons set out later on, I do not accept Hillingdon's arguments. I find that Steven was deprived of liberty throughout the year. I reject its case that Mr Neary consented. The authorisations relied upon were flawed, and even if they had been valid, they would not in themselves have amounted to lawful authority for keeping Steven at the support unit

  3. It follows that Hillingdon had no lawful basis for keeping Steven away from his home between 5 January 2010 and 23 December 2010. The fact that it believed that it was acting for the best during that year is neither here nor there. It acted as if it had the right to make decisions about Steven, and by a combination of turning a deaf ear and force majeure, it tried to wear down Mr Neary's resistance, stretching its relationship with him almost to breaking point. It relied upon him coming to see things its way, even though, as events have proved, he was right and it was wrong. In the meantime, it failed to activate the statutory safeguards that exist to prevent situations like this arising.

  4. Fortunately, the evidence establishes that Steven has suffered no significant or long-term harm as a result of these events, although they were distressing for him and for his father. However, things might easily have turned out differently. By the summer of 2010, Hillingdon's plan was to send Steven to a long-term placement somewhere outside London, which could have caused irretrievable damage to his family ties, and particularly his very close relationship with his father. In the case of at least one of the facilities, it was a precondition that Steven was placed under a compulsory Mental Health Act section. It is very troubling to reflect that this approach might actually have succeeded, with a lesser parent than Mr Neary giving up in the face of such official determination. Had that happened, Steven would have faced a life in public care that he did not want and does not need.
  1. I declare that Hillingdon has breached the rights of Steven Neary in the following respects:

  2. (1) By keeping Steven Neary away from his home between 5 January 2010 and 23 December 2010, Hillingdon unlawfully breached his right to respect for his family life, contrary to Article 8 ECHR.

    (2) By keeping Steven Neary at the support unit between 5 January 2010 and 14 April 2010, Hillingdon unlawfully deprived him of his liberty, contrary to Article 5(1) ECHR.

    (3) By keeping Steven Neary at the support unit between 15 April 2010 and 23 December 2010, and notwithstanding the urgent DOL authorisation granted by Hillingdon as managing authority and the three standard DOL authorisations granted by Hillingdon as supervisory body, Hillingdon unlawfully deprived him of his liberty, contrary to Article 5 (1) ECHR.

    (4) By failing to

    (i) refer the matter to the Court of Protection sooner than 28 October 2010, and/or
    (ii) appoint an Independent Mental Capacity Advocate for Steven sooner than 29 October 2010, and/or
    (iii) conduct an effective review of the DOL best interests assessments under Part 8 of Schedule A1 of the Mental Capacity Act 2005,
    Hillingdon deprived Steven Neary of his entitlement to take proceedings for a speedy decision by a court on the lawfulness of his detention, contrary to Article 5 (4) ECHR.
    1. By 4 January 2010, there were the first signs of the seeds of later difficulties. A professionals meeting took place between the social worker and staff at the unit and the care workers' manager. A letter from the social worker to the manager refers to a longer stay so that the support unit could get a better understanding of Steven's needs, with a review on 15 January. For some reason, the social worker asked for this plan to be kept confidential. On the same day, the social worker spoke to Mr Neary and outlined plans for a longer stay for Steven than had originally been contemplated.
  1. By this stage, Steven's behaviour was causing grave concern to professionals and to Mr Neary. The latter describes himself as quite overwhelmed by the number of issues arising daily, and feeling very emotional himself. He described in evidence how in the period between January and April he got caught up in lots of micro-events and lost sight of the bigger picture. He accepts that during these weeks he was not actively objecting to Steven being in the support unit, even though he had never agreed to it. By 25 January, a meeting was taking place between Mr Neary and the professionals which focused exclusively on practical day-to-day issues.

  2. I again accept this description of events. Regrettably, once Mr Neary's initial resistance to its plans weakened and fell away, Hillingdon appears to have taken a dim view of his concerns. In an e-mail dated 22 February from the social worker to the support unit, the following appears: "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."

  3. 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.
  1. 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.
  1. 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."
  1. On 7 July, the social worker wrote to the team manager setting out some thoughts ahead of a meeting later that day. The message analysed the position from Hillingdon's point of view and noted some general concerns about Steven's return home. These include: "Currently feel that we are giving mixed messages to Mr Neary about Steven going home ... Legal has said that we have enough for Court of Protection if this is the direction that we are going in, this is the direction we are going in" (sic).
  1. On 16 August, the psychologist reported, highlighting the lack of independent advocacy for Steven or Mr Neary, and commenting that Steven's autistic spectrum disorder had received minimal attention at the support unit. It is deplorable, and a clear sign of the adversarial approach being taken by Hillingdon, that this report was deliberately withheld from Mr Neary for at least six weeks.
  1. 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.

  2. (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.
  1. Lastly, 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.

Wednesday, 25 June 2014

Story Ninety Nine - The Hearing (3)

Day four had two witnesses: Chris, Steven's other main support worker and me.

Chris was great. As someone who had known Steven since he was 15, his evidence I felt carried a lot of weight. Aswene spent a lot of time with him, asking him to describe Steven pre The Unit. Hillingdon's barrister pursued a familiar line about Steven being a threat to everyone. I didn't really have anything to ask Chris as his evidence had been so thorough.

Then it was my turn. It's weird because I have hardly any recall of the three hours I spent in the witness box. In fact, I couldn't recall anything the day after. The first hour was dreadfully draining as Hillingdon's barrister persisted in trying to get me to state that I'd agreed for Steven to be at the Unit long term. This couldn't go anywhere because it wasn't true but he hammered away for over an hour.

Apart from that, I remember the Judge asking me about my relationship with the Unit manager and the social worker. Aswene asked me about my upset the day before when the team manager gave his evidence and that set me off again. And I was asked to talk about my relationship with Steven, the history, the difficulties, the bond. That was nice but emotional because nobody in the whole year that Steven had been away had been the slightest bit interested in any of Steven's relationships, including his relationship with me. So from the witness box in the Royal Courts of Justice I heard myself talking about Mr Bean, Abba, Take That, Basil Fawlty and all the other key reference points of Steven's life.

We broke for lunch halfway through my evidence and I was reminded that I couldn't talk to anyone as I was still under oath. I went at sat in a park by the Embankment and the loneliness of the whole week hit me. I had been told that as the CoP was a private court, I couldn't have anyone with me. But Hillingdon had a whole group of people there the whole week. When I got back, I checked this out with Sophy and I learnt I had been misinformed. Perhaps it was for the best - I was able to concentrate on being a litigant in person without the distraction of having friends there. But it would have been nice to have some support.

The final day was taken up with the closing addresses. Hillingdon's address took the whole morning. It wasn't meant to be that long but the Judge took them apart over the legality of the DoLs. I was making copious notes, trying to get some clue of what the final outcome might be. I counted 24 comments from the Judge that seemed to be in our favour. Aswene was given a much easier ride, which again, seemed to be a point in our favour.

The last afternoon was packed with the drama of the revelation of Hillingdon's vile press release. After it was leaked, Aswene was furious and we went back into court and the judge expressed his "dismay". The Hillingdon press officer was called into the witness box but it was the same pattern as the whole week - it was impossible to work out who made the decisions. Nobody was prepared to take any responsibility.

And with that, it was all over. Reconvene in two week's time for the judgement to be handed down. I had never felt so exhausted in my life. It was going to be a long two weeks until 9th June.

Tuesday, 24 June 2014

Story Ninety Eight - The Hearing (2)

Day three was a packed day with three witnesses.

First cab off the rank was Francis, the support worker who had been with Steven most days during his time in the Unit. He is one cool dude and never got ruffled by the grilling he got from Hillingdon's barrister. My cross examination was brief - just getting Francis to describe Steven before, during and after his time in the Unit. Unlike the previous day when the Unit manager constantly sought reassurance from his managers, I knew that Francis could speak his absolute truth with assurity and integrity.

Second witness was the expert witness. This was the psychologist who Steven had described as Neil Tennant. His evidence repeated what he had written in his report and he was resolute that the best place for Steven was in his own home. He also flagged up one of the problems of functional analysis - challenging behaviour arising from the confinement being used as a reason to continue the confinement. It's clear from the final judgement that the psychologist's evidence carried a lot of weight for the judge, so I am forever grateful that he was such a fair, considered man.

The final witness was the social worker's manager. With the social worker still off sick as a result of the anonymous letter, it fell to him to present the case for the social care team. He got a very hard time from Aswene and it was strangely satisfying to see the amount he was sweating. Aswene went through 10 points of the Mental Capacity Act with him, and he had to admit that they had failed on all 10. At this point, Aswine said: "Is this a good opportunity to offer an apology to Steven and Mr Neary?". And at that point, I broke down. This incredible sob from somewhere very deep emerged and the court usher came rushing forward with a box of tissues. I guess it was the release of a whole year of the most terrible pressure. I managed to compose myself for the cross examination. The manager had told the judge that he regretted the lack of openness in the way they had dealt with me and Steven the first part of the year and in July, they had decided to be more transparent. I knew that I had him so I quickly thumbed through the six binders of written evidence and found and email from September. It was about the psychologist's report from August that the council didn't want me to see and they sat on it until the end of October. The last line of the email was:"Mr Neary has not been shown this report". I got the manager to read this line out and then said to him: "So, although you decided as a team in July to be more transparent with me, that email from 27th September shows quite the opposite. No further questions". And sat down. 

That was the Hillingdon case. All of their three witnesses had given their testimony and it had been a shambles. At the end, the judge questioned the manager who admitted that one of the senior managers had a "wobble" about the council's stance and that she had resigned a couple of weeks before the hearing. He also said how in October the new director of social care had also expressed concern but it didn't change the corporate decision.

It was a very dramatic end to the day. On the way home, I phoned Val to give her an update and later she sent me a text that read: "Forget the book. Forget the film. This is an opera".

Story Ninety Seven - The Hearing (1)

So. There I am sitting in the front row of the courtroom in the Royal Courts of Justice. Hillingdon's barrister and the OS barrister have just delivered their opening address to the court, outlining the declarations they want the judge to make. Justice Peter Jackson looks over to me and invites me to present my opening statement. My nerve failed me. I sat there thinking: "Fuck - I don't even know the correct form to address the judge". I smiled and said that I had nothing further to add to the OS's statement. Strictly speaking, this was true but it felt a terribly weak start to my week as a litigant in person.

The first morning was spent addressing the press's application. They wanted to do a daily bulletin and name names as well. The judge wouldn't allow either. He said that he would address the reporting issues once the hearing was complete. But the reporters were allowed to stay in the press box and Kurt Bahling from the BBC, Jerome Taylor and Andy McSmith from the Independent, Billy Kember from The Times and Brian Farmer from the Press Association sat there all week.

The first witness was Hillingdon's head of adult safeguarding. It threw up from the beginning the danger of wearing more than one hat. As the safeguarding manager, he would have had close contact with all the professionals about day to day issues. But he was also the head of DOLs and that role demanded a neutrality that on the one hand, he kept stressing he had to take but at the same time, he attended care planing meetings for Steven that he had no place in attending. His evidence overlapped into the second day, mainly because the OS tore each of the four DOLs authorisations to shreds. Whilst he maintained that he carried out a fair and independent scrutiny, the evidence showed that he was just a rubber stamper. There was one very naughty bit where he added something to the 2nd DOL that hadn't been included in the best interests assessment. 

Halfway through day two, the manager of the Positive Behaviour Unit was called. The man was a bag of nerves. There was about half a dozen Hillingdon staff sitting in court and he spent most of his time in the witness box, looking across to them for help ( to be saved?). Aswene got irritated by this and pulled him up on it. I got a chance to cross examine him. he had made a big thing about the closeness of our relationship, which really stuck in my throat as when I'd seen the court records in December, it was clear that he had lied to me for over 6 months. All that "I like dealing with you mate" stuff range very hollow. I wanted to take apart his statements about the "vulnerable groups" that Steven "targets" (men in hats, spectacle wearers, parked cars) and show that he is prone to gross exaggeration. He'd given me an opening during his questioning from Aswene, so I took him back there and felt I did quite a good job. 

We were at the end of day two. Two of Hillingdon's three witnesses had given their evidence and it had been a shambles. We always knew that their case was so weak but the way that both witnesses crumbled was quite alarming to witness.

Sunday, 22 June 2014

Story Ninety Six - Sabotage

Steven was settled back at home. The High Court hearing was less than two months away. Would Hillingdon do anything at this late stage to put the mockers on things? Of course, they would.

I wrote earlier about the strange anonymous letter they claimed to receive from a "friend of the Neary family" that was threatening to the social worker and resulted in her going sick and missing the hearing.

A few weeks before the "letter", it had been Steven's birthday. Three days before his birthday, I had to attend one of the interminable meetings with all the professionals where they examined all the logs we were having to keep and suggested ways to improve the record keeping. The Unit manager asked me if we had anything planned for Steven's birthday. As it was his 21st, we'd arranged a trip to see Grease at the theatre and were having a small party the day after. There followed a short discussion about risk assessing the theatre (in case Steven got a bit difficult during Hopelessly Devoted To You).

The next day, the social worker phoned - could I go and see her urgently. When I arrived she announced that they had received an anonymous tip off that there were employment irregularities with the support agency. Rather than start an investigation, the management team had decided to cancel the contract with immediate effect. No support workers for the birthday weekend. No trip to Grease. No Pizza Hut. She then tried to get me to agree to taking on the agency that supply the staff for the Unit as replacements. There was no acknowledgement at all about how awful this would be for Steven - all of his trusted friends would disappear overnight, to be replaced by people who were around the previous, traumatic year. I said "no" and I was determined to get the guys (and the agency) reinstated. The social worker looked furious and said: "You've got to work with me on this one Mark". I left.

I phoned Amanda immediately I got home and as immigration is one of her expertise, she offered to meet all the guys at her chambers on the Monday morning with their passports and papers. Needless to say, everything was in order and she informed the council's legal department straight away. It took three more weeks for the council to reinstate the contract!

Steven did get to Grease. The guys offered to work for nothing, so as not to spoil Steven's birthday and when the contract was eventually reinstated I was able to backdate their pay for them. 

An anonymous letter and an anonymous tip off in the space of two weeks. I don't believe it for one moment. It seemed totally engineered to discredit me as they knew I was about to be a litigant in person and to sabotage Steven's support, so they might get some last minute evidence of how challenging he can be.

Nice people.

Saturday, 21 June 2014

Story Ninety Five - Litigant in Person -

At the beginning of March 2011, I had no idea what a litigant in person was. By the end of March 2011, I was one.

Once my legal aid was stopped, I had  a simple choice - appear as a witness for the Official Solicitor or represent myself (a litigant in person). I am either foolishly naive or arrogant because I decided on the second option. I had read all the submissions from the Official Solicitor and they were really going for it - breaches to Steven's Article 5 & 8 Human Rights and that all four DOLs had been unlawful. I read their legal argument and it looked very sound and watertight to me. So, the legal argument was covered. 

However, the OS seemed less interested in exposing the level of manipulation and lies we had to deal with all year. I can see why - the legal argument was so strong in our favour, it might have been over - egging it to go for more. But I couldn't let it rest. So, I decided that would be my role for the week. Amanda was very encouraging and promised to help me out. But she also knew that I wouldn't go in for grandstanding - I would keep things very straightforward.

Chris helped me with the technical stuff and what I could and couldn't do as a litigant in person. I could make an opening statement to the judge, I could cross examine all the witnesses and I could deliver a closing address. I know that this is going to sound like I wanted to be Nemesis of Uxbridge, but I worked out two questions that I wanted to ask each of the Hillingdon witnesses - a couple of blows to the balls and then I'd sit down and let the professionals get on with it.

I'll write about the hearing in posts 97 & 98 but my balls nearly left me on the first morning as we filed into court and I was asked to sit, on my own, at a bench in the row in front of the OS and the Hillingdon barrister. Then the enormity hit me.

Story Ninety Four - Legal Funding

One of the many vile things the Ryan family have had to encounter since LB's death is the dreadful inequality in legal funding. In order to be represented at the crucial inquest, the family have been scrambling around fundraising to meet their costs. In the meantime, Southern Health, Oxford CCG, and all the other public bodies involved can draw on seemingly unlimited public funds to secure their legal representation. That stinks worse than a mound of frothing pig shit.

In our case, Hillingdon were consulting their lawyers from the very start. I guess that's the way with LAs these days - their legal departments are the key players in their day to day business. We've seen many cases over the last few years, where LA managers must have gone to their legal teams and asked: "Can we get away with this?"

In the court records, there are emails from the social worker or the Unit manager to the legal department asking for advice or seeking affirmation that their plans were legal.

At the demonstration in August, one of the supporters approached a woman who announced that she was from the legal section. My friend was shocked by two things: her certainty in her rightness and her willingness to smear Steven and me. At one point, she laughed and said: "This will never come to court. The family are on a hiding to nothing".

I've written in earlier posts about the five month battle to get legal representation and how many blind alleys we went down. It was also incredible how misinformed people in the legal profession were about funding and DOLs. Finally getting Chris the giant was a complete fluke.

Why am I bringing this up again? Well, after the February hearing, we were told that because Justice Jackson had terminated the DOL, my access to legal aid stopped. We were mid hearing - there was still the May week long inquiry to deal with but my legal support was over. Thankfully, Steven was still entitled to be represented by the OS but for me, I had to say goodbye to Chris and Amanda. I was left with the choice of either just appearing as a witness for the OS, or to be a litigant in person. (More about that decision in the next post).

Since the case, there have been two FOI requests to Hillingdon (not from me), asking for a breakdown of the costs of the case. They have never satisfactorily answered. They never costed the full cost of their in house legal support. So, I have no idea how much the ratepayers of Hillingdon coughed up to fund Hillingdon's case. But it must have been an absolute fortune.

Thursday, 19 June 2014

Story Ninety Three - 2 Days in February

Two days were set aside for the February hearing. The case was now being heard by Justice Peter Jackson. The largest chunk of the first morning was taken up by the Press application to report on our case. Their barrister put a strong case about the public interest and despite rather alarming predictions from both the Hillingdon barrister and the OS, Justice Jackson gave an order that the press could report our story. Because, it had already been in the public domain with no bad consequences, he agreed that Steven, me and Hillingdon could be named.

With that sorted, Justice Jackson suddenly asked: "Why are we here today?" The OS was seeking declarations that Hillingdon had breached Steven's Article 5 & 8 Human Rights and that all four DOLs were unlawful. 

Because it had been so low key, the main point of the hearing was almost forgotten - the judge ordered that Steven living at home was now a permanent order. I know that everything (the expert's reports, the position being taken by both the OS and Amanda, and the actual evidence of the past two months of Steven actually being at home) pointed in that direction but it was still a massive relief to hear those words.

We adjourned to discuss the nature of the hearing and when we came back, Hillingdon's barrister expressed his client's surprise at the idea that they had acted unlawfully and that they were not prepared to be cross examined about this today. He also said that even if the Judge found that they had acted illegally, they could be hardly be held responsible for honest mistakes. Justice Jackson wasn't having this and told them that an unlawful act was an unlawful act. Chris kicked me under the table and whispered, "He's marking their card". But there wasn't a lot the Judge could do with Hillingdon taking that position, so he ended up setting a week long hearing in May to examine the legality of Hillingdon's actions. In one fell swoop, the spotlight was off Steven and me and firmly on Hillingdon.

We filed out of court and were immediately pounced on by the press. Amanda grabbed my arm to take me off to lunch and left Chris to deal with the journalists. When we got back, all the press had departed except for my old pal Kurt Bahling from the BBC and me and Chris did an interview with him on the steps of the Court. As we were leaving we bumped into one of the court experts, who shook my hand and wished Steven all the best. It was a very touching moment.

So, the two day hearing shrunk and by 2 o'clock I was on the tube on my way home. Chris had issued a press release and lined up several interviews over the next couple of days. After all the press support during the campaign, I was more than happy to do the interviews.

The next day, I was woken up by a text from my friend Val - "OMG - do you realise that you and Steven have pushed Gadaffi and Libya off the front pages". And there we were - the front page of both The Times and The Independent. The Guardian and The Telegraph also ran the story. It was the start of a very full on week but I wanted to keep things in proportion too - the stability of Steven's home life had really impressed the Judge and I didn't want to jeopardise that.

Wednesday, 18 June 2014

Story Ninety Two - Expert Opinion

With Christmas done and dusted, we had to get down to preparing ourselves for the February hearing. After a brief respite of relief, the council's position statements started to file in and the anxiety cranked up again. Basically, they weren't changing their position at all - entrenched in their belief that the bst place for Steven was hundreds of miles away.

The two court experts came to visit, Steven did his lookalike thing with them. One he said looked like Charlie Slater from Eastenders; the other looked like Neil Tennant. I was almost sick with nerves before each visit. So much hinged on their independent reports.

I needn't have worried. Once again, here were two men who couldn't have been more different from the Hillingdon posse. What was clear from the start was that they were both interested in Steven and they both knew how to tune into him. He made them laugh. They didn't just fire a series of questions at him - they engaged in a conversation with him. 

Where did it all go so wrong with social care? In the space of two months, we'd had Cilla, Chris the Giant, Amanda, Sophy, Aswene, Justice Mostyn and now the two experts - all of them full of humanity and just knowing how to do it. I'm not just saying that because we got the outcome we wanted but the contrast was so stark. The humanity and respect and dignity was coming from the legal world, whilst the social care world showed nothing but coldness, defensiveness and downright vindictiveness. There was never any sense throughout the whole year that they saw Steven (or me) as a human being with all the gifts and fallibility that define us. 

The experts' reports came in and they both recommended that living at home was firmly in Steven's best interests. These reports weren't at all like the Hillingdon best interest assessments. They were proper, considered arguments running to many many pages. Giving Steven the respect of their time and professionalism that the situation warranted.

Tuesday, 17 June 2014

Story Ninety One - Homecoming

For the first couple of months of Steven being away, I used to go into his bedroom, just to smell the pillows. The smell of Steven. But after a few weeks, the smell started to fade and the bedsheets just smelt musty. After the dreadful DOLs review in April, I came home furious and stripped Steven's bed. I put clean sheets on whenever Ian stopped over after the Balcony Olympics. And in August, the BBC wanted establishing shots of me making Stevens bed for the piece they were running. But for the most part of the year, the bed remained unmade. On 23rd December, I made the bed with tears streaming down my face.

I knew that Steven wouldn't have coped with a welcome home party, so there were no banners or balloons. He'd helped me put up the Christmas decorations the week before and that was enough. I'd got all the things Steven expects of Christmas Day: Cheeselet's, Pringles, Maltesers etc and the presents were wrapped, including the new Take That CD with Robbie back on board.

As I hadn't been part of Steven's life at the Unit, I decided not to go there to pick him up. I would welcome him at the door instead. I didn't fancy having incongruent happy pleasantries with the staff either. The two support workers told me a lovely story. All year long, Stevens signature tune for the Unit manager had been Queen's I Want To Break Free. As all the staff came out the Unit to wish him on his way, Steven went up to the manager, shook his hand and burst into Cliff's Congratulations. I'd have given anything to have seen the reaction.

Steven got home around midday. He checked out all the rooms to make sure everything was in its rightful place. He checked the cupboards to see what crisps I'd laid out for that evening. And then he settled down to watch the DVD of Mr Bean in America. He hasn't had use of a DVD for a year and he had lots of catching up to do. I sat at the dining table, watching Steven watch Mr Bean. It was such a treat.

Monday, 16 June 2014

Story Ninety - Breaking The News

I got home from the High Court about 20 minutes before Steven was due home for his Tuesday night "fake transition plan" visit. Only this time - it wasn't fake - I'd be telling them him that he was coming home for good. I knew the order Justice Mostyn had made that morning was just an interim order but I was also sure that once home, there was no way that Hillingdon would ever get him again. Something would have to go drastically wrong for the two court experts to decide that living at home was not in Steven's best interests.

Because the court order was never published, we fell under the COP's privacy rules and therefore, I had to fend off all the press interest that was generated. I left that to Chris to do and he set up several interviews for February, when the final hearing would take place.

Steven arrived home at 4.15. Francis, his main support worker was with him. And the guy from the Unit, who had been to most home visits and spent them making copious notes in his little black book. I didn't want to tell Steven in front of him. I could see that the guy had already heard the news and he was looking desperately uncomfortable. So, I took Steven and Francis up to his bedroom. I hadn't worked out what to say but blurted out: "Steve - do you want a really big surprise on Friday?" Bear in mind, that Hillingdon had told Steven about their plan to move him to Wales and hadn't reassured him that he could open his Christmas presents in the Uxbridge house. 

"Open Christmas presents in the Uxbridge house on Friday?"

"Yes. Open Christmas presents in the Uxbridge house on Friday and stay in the Uxbridge house with Dad forever and ever".

Steven thought about it for a bit:

"M House is all finished on Friday?"

"Yes. M House is all finished on Friday. Coming back to the Uxbridge house on Friday forever and ever".

It took several repeats before it started to sink in. Me and Francis were crying - Steven was singing "Back For Good".

And then, the normal Tuesday night routine kicked in. I went off for the KFC and we settled down to a mammoth Christmas music DVD session (Cliff, Boney M, Wham etc etc). 

After Steven went back to the Unit, for the first time that year, I didn't get upset or feel empty. I didn't sleep that night. I spent the whole night on the Get Steven Home group, reading people's wonderful messages and thanking everyone for their support.

I must have slept a bit because I woke up at 5am the next day with a stark thought. Because I'd been so scared that Steven would be spending Christmas in Wales, I had put Christmas preparations on hold. I'd better get cracking - I had a proper family Christmas to arrange.

Sunday, 15 June 2014

Story Eighty Nine - High Court

356 days after Steven left his home for three days respite, we finally made it to the Royal Courts of Justice. It was 21st December 2010. It had been snowing heavily for three days and the night before, Chris had phoned me to say that he was snowed in down in Cornwall and wouldn't be able to make it. I booked a cab to get me all the way to Holborn as the trains had been seriously disrupted. I arrived very early and explored the splendid gothic building and then sat outside the courtroom waiting for everyone else to arrive. Sophy arrived and introduced me to the OS barrister, Aswene Weeratne and the Hillingdon barrister came over and made himself known. Amanda arrived and took me off to a quiet room for a last minute briefing. She was feeling confident and said that she would test the temperature of the Judge and then really go for it - lift the DOL and an immediate return home. That seemed too good to be true to me.

We went into Court, before Justice Mostyn and all three barristers gave their opening address. It was so heartening to hear both Amanda and Aswene saying pretty much the same thing. The first bit of business was shocking - Hillingdon dropped their welfare deputy application! I thought - "what does that leave them with? They had put all their eggs in one basket and had now removed the basket". Whilst I was mulling over this thought, I heard my name being called to give evidence.

The Hillingdon barrister went first and persistently asked me whether I was intimidated by Steven and why didn't I accept the level of threat he posed. I could see that it was grandstanding for the judge but is was deeply uncomfortable. After short cross examinations from Amanda and the OS, the judge wanted to ask a few questions. It was nothing like I'd expected, like I'd prepared for. I thought I'd be giving a long account of everything that had happened. Instead, he just focused on the sort of home life Steven might have if he decided to let Steven come home. It was great because I was able to talk about the kind of things that all year long, Hillingdon had never wanted to listen to.

After 20 minutes, I was asked to return to my seat. No Hillingdon witnesses were being called. The Judge announced that he was going to give his judgement. He described my testimony as "genuine, reasonable, articulate and very moving", which set me off. And then, as if he was talking about the weather, he announced that he was terminating the latest DOL and Steven was free to return home immediately. I broke down and missed the rest - it was an interim order. We were to return in February and if all had gone well, it would be made a permanent order. The court would appoint two experts who would visit us and file a report on what they considered to be in Steven's best interests.

It was all over.

You may think I'm stark raving mad but I know how important preparation is for Steven. So, although I could have gone and picked him up from the Unit there and then, I said that we needed to prepare Steven for the homecoming. We agreed that I would tell him later today on his home visit and he would come home three days later on Christmas Eve.

There was one last bit if business. Amanda and I met the Hillingdon managers to discuss the support package. Amanda and Aswene both felt, that to quash Hillingdon's "belief" about risk, we should have support for pretty much the whole day. It will be good evidence come February. And that was what was agreed. I didn't think it was necessary but apart from the night times, there would be support in the home all day and every day until the February hearing.

There was no time for a celebration - I had to get home to break the news to Steven.......

Saturday, 14 June 2014

Story Eighty Eight - Statements

Next job to do in December was to travel up to her chambers to meet Amanda, our barrister.

Before that, Chris and I spent ages writing our position statement. This was, of course, all new to me. My naive idea was to include every single thing that had happened throughout the year - rather like all the stories I have included in this blog. I find it difficult in those early days of getting representation to distinguish between the points of law and all the other abuses that had gone on over the year. After hours of discussion, we came up with a very long position statement.

Amanda took one look at it and said that it was too unfocused. So back to the drawing board, we pared it back to the two main declarations we wanted the judge to agree. Firstly that the current DOL was unlawful and should be terminated. And secondly, that it was in Steven's best interests to be living at home. The legal people believed that if we got the first one, the second would automatically follow. So, we ended up with a much shorter position statement that I must admit made me nervous. Had we done enough?

Over the next week, Hillingdon's position statements started to come in. The social worker had gone missing, so it was left to her manager to prepare the one on behalf of the supervisory body. The Unit manager wrote the one for the managing authority. They were dirty pieces of writing. Both of them portrayed Steven as a dangerous young man and me as an uncooperative, belligerent father. It was also at this point that we discovered the content of Hillingdon's application - they hadn't,as they led me to believe since August, made an application for a DOLs review. In fact, their application didn't even mention the DOLs. They were going for a full welfare deputy application which would have given them complete control over all the decisions in Steven's life, cutting me totally out of the picture. It was outrageously audacious and arrogant. Did they not expect a full hearing where the extent of their deceit would be revealed? Did they just assume it would be a rubber stamping exercise? 

A few days later, Chris turned up with boxes full of all the social care records. he wanted me to go through the whole lot and pull out the ones that I thought would be good for the case. He'd already discovered that the head of safeguarding adults who was responsible for DOLs had been adding bits to the authorisations that hadn't been included in the best interests assessments. So much for impartiality. My guess was that on the day each DOL was due to be authorised, he and all the stakeholding managers got together to make sure they were all singing from the same hymn sheet. It was whilst going through these boxes that so many things came to light about how much Steven and I had been lied to during the year. Of course, I was furious but I also had a sense of relief as well - relief that I hadn't been going mad and been imagining things. Amongst the things I found were the minutes of the meeting in April when they decided to send Steven away but not to tell me; the "always something or other with Mr Neary" email, emails from some of the professionals expressing their discomfort with what was happening. There was a lot to take in. I was astonished at the number of private professionals meetings that had been held over the year. And they either achieved nothing or made decisions that they had no right to make. It took three days to go through all the boxes and I was exhausted by the end of it.

The last thing to do was to write response statements to the statements submitted by Hillingdon. Once again, I got caught up in wanting to expose the duplicity and had to be reined in by Amanda who said ti would all come out in court (which of course it did).

And then it was a case of waiting. A long week's wait until the 21st December when all would be decided.

Friday, 13 June 2014

Story Eighty Seven - The Balcony Olympics

Yesterday, I wrote that suddenly having people on my side (Cilla, Chris, The OS) was a tremendous boost to my confidence. So much so, that the balcony Olympics were resurrected.

Throughout the year, some of the worst times were Saturday and Sunday evenings. Especially once the fake transition home plan had started. Steven was allowed to come home for a three hour visit on Saturday afternoons and then it was my job (with the support worker on duty) to take him back to the Unit. On the other home visits, he would be taken back by the two support workers that came with him, so the pain wasn't so bad. I used to dread the Saturday visits, purely because I knew that at 5 o'clock, I would have to take Steven back to the hellhole. Sometimes, Steven would kick off when we got back to the Unit. One Saturday, we got back and I went with Steven to his bedroom to dump his back off. Steven had been very tearful, saying "Don't want Dad to go back to the Uxbridge house". As we stood on the landing, Steven hit me round the face. I got upset because I knew the agony he was in to do that. The Unit just recorded it as an example of me being at risk and nor setting appropriate boundaries.

One Saturday night, we'd had another upsetting return and I was feeling so low. My mate Ian came round and we went to the pub at the top of my road. They were serving jugs of cocktails, two for the price of one. By 10 o'clock, we had got through six jugs. We went back to my flat and Ian was starving. I had been neglectful of the housework recently, and Ian kept coming across foods in my cupboards that were a long way and dangerously past their sell by date. To make good use of these items we invented the Balcony Olympics. We had a whole series of events: tossing a ski yoghurt at a 607 bus; pelting young lovers with pickled onions; how far could we get a cube of lime jelly to bounce down the High Street; any car with their stereo too loud got soaked in vegetable lasagne. The jelly one was good. For days afterwards, I kept finding little cubes of lime jelly, refusing to be crushed by the traffic. Ian won most events but he's always been a bigger tosser than me.

That night in early December, we brought the games back to life. We could be a bit bolder as it was darker and we'd be less likely to be seen. I won more events. But then again, I had had a year of practice.

Thank you Hillingdon - you improved my sporting performance no end.

Thursday, 12 June 2014

Story Eighty Six - Enter The OS

The court application was accepted and immediately the court appointed the official solicitor to act on Steven's behalf. The first thing she wanted to do was to meet Steven. Chris kept telling me how important first impressions were to the OS, so I became a nervous wreck about the meeting.

I would have liked the meeting to take place at home on one of Steven's home visits. The Unit wanted it at the Unit. They won.

Needless to say they wanted to make the visit as difficult for Steven as possible.  They objected to Stevens two main workers being with him. They said it had to be Unit staff. By now, they knew we would be calling the guys as witnesses for us at the hearing. That led the council to undermine the guys more than ever, saying they couldn't be trusted not to lead Steven during the interview. In the end, we compromised and had one of the guys and a Unit worker present.

I was pacing the flat all day. Late afternoon I got an email from Chris - Sophy Miles (the OS) had sent him a transcript of the meeting within 2 hours. I burst into tears. This will sound like a terrible indictment of all the Hillingdon professionals but it was astonishing how well Sophy had related to Steven. The transcript showed an interest in Steven and an empathy for him that had been absent all year. It was so moving. And Steven played a blinder. He expressed himself clearly and calmly. He could tell Sophy where he wanted to live. He could explain why he liked living at home and why he didn't like living in the Unit. It was the most incredible stark contrast to all the mental capacity assessments and best interest interviews, that were so loaded against Steven.

The best thing of all was that it was clear that the OS would be taking the same position as my legal team and the IMCA - that living at home was overwhelmingly in Stevens best interests.

The relief was immense. Tomorrow, I'll tell the story of how I celebrated that night by reserecting the balcony Olympics.

Tuesday, 10 June 2014

Story Eighty Five - Holby City

In the week following me instructing Chris the Giant, things moved incredibly fast.

The court application was submitted. Chris asked the fabulous Amanda Weston to be our barrister. Steven was referred to the Official Solicitor to act for him, Hillingdon were instructed to hand over all their records. And a hearing date was listed for 21st December - three weeks time.

That week the social mysteriously went on three weeks leave - to return on 22nd December! Hillingdon obviously felt they darent risk putting her in the witness box, so she was hidden from the court's view.

Time was running out but Hillingdon still had time for one more stunt. One of their cruelest of the year. They told Steven that he might be moving to a hospital in Wales for Christmas.

It had the desired effect - Steven was beside himself. "Steven Neary's not sick". " Doctor's not cutting Steven Neary's belly with a knife like Holby City". "Mark Neary bring Steven Neary's Christmas presents to the hospital". He was in a blind panic. It was heartbreaking.

The intention was obvious. Before the hearing, Steven would be interviewed by several legal people. Hillingdon wanted his anxiety levels so high, he might have kicked off and showed the legal people that Hillingdon were right.


Story Eighty Four - Cracking Nuts

At about the same time that I got Cilla and Chris the Giant, Hillingdon decided to get a new weapon on board for them - the in-house psychologist.

My God - was she indiscreet. She went to a meeting at the Unit with the managers and later came out into the main living room. The Unit junior staff were there, along with Steven's support workers and Steven himself. She was chatting to one of the Unit staff about Hillingdon's plan to move Steven to Wales and said in full earshot of everybody - "Well, Mr Neary is the tough nut we have to crack".

Beryl Reid and her best schoolgirl friend used to have a phrase after meeting someone they didn't like - "Ugh, lumpy sick outside pubs". And in our house, that's what the psychologist became known as.

I was called to a one to one meeting with her. Later in the court records I found an email that the social worker sent her prior to the meeting. I had written to the Unit a few weeks before and mentioned that I feel "Steven would have experienced a level of trauma over the past year". In the email, the social worker mocks this statement by asking the psychologist to look at the "trauma" and "work with Mr Neary in relation to this "alleged trauma".

I had a stinking cold on the day of the meeting. It was late afternoon and quite frankly, I just wanted to go home to bed. I had already been told by one of Steven's workers about the "tough nut" bit and it was clear that her whole approach for the meeting was to do just that. Considering that I have worked as a counsellor for 14 years (which she knew) she launched into lectures about trauma and whether we know enough about the autistic condition to determine whether an autistic person can experience trauma. On a better day, I would have slaughtered her. It was so patronising and loaded with spite. She kept trying to draw me on my feelings about them moving Steven but as I knew a court date was looming, I preferred to save my feelings for the court.

The meeting started to peter out and then she said: "I'm not letting you go today Mr Neary until you can tell me five positive things about Steven's stay in the Unit". I looked at the clock and it was 5.15. I thought we'd be there all night. I could see that the whole point of the question was not to get an answer but to antagonise me and use my response for their "Un-cooperative parent" log. I actually sat there thinking, will she physically try to stop me if I just get up and walk out". In the end, buoyed by the confidence of having Cilla and Chris believing me, I just told her I was off and walked out.

She stayed on Steven's case for two years after he came home. In all that time, she never made one suggestion or recommendation of any use. Her mantra was "we need more data", so she would design more and more complicated logging forms. Once she turned up unannounced and uninvited to a meeting I had with Steven's dietitian. She had grand ideas above her station and saw it as a reasonable psychological intervention to try and intimidate her clients. She really was shameful and we're well rid of her.

Saturday, 7 June 2014

Story Eighty Three - Chris The Giant

The day after Cilla came with me to the meeting where Hillingdon announced that they had agreed the tender from the hospital in Wales, I got me a solicitor. It was 29th November and it had taken since the beginning of May to find legal representation. Cilla was taking three days off and told me to download the Court of Protection application forms and we'd complete them together on her return.

I took the next day off work, determined to find a solicitor. A few months earlier, Lucy Series made contact with me and we'd kept in regular contact. That day, she saw the Facebook post I'd done and she offered to help ringing around. About noon, she called me to say that she thought she'd found one. It was a legal firm in Cornwall - I live in West London. But she was just about to speak to the guy on the phone and was very hopeful. That guy was Chris Cuddihee.

It was another of those "angels" moments. That day, Chris just happened to be up in Paddington on a DOLs conference. He was finding it very turgid, so was prepared to bunk off for the afternoon and travel across London to meet me. Two hours later, I was waiting outside Uxbridge station when this huge man appeared - I'm 5ft 8 and he was at least a foot taller than me. We went back to the flat and Chris spent a couple of hours talking to me and getting the story onto his laptop. He then asked me to leave him for an hour whilst he went through all the DOLs authorisations. I didn't know what to do, so went upstairs and hoovered the bedrooms. Chris had a similar response to the authorisations as Cilla - he couldn't believe how bad they were. I came back into the living room and Chris was smiling. He stood up and shook my hand and said: "Right let's nail those cunts and get your son home". I knew we were going to get on swell. The doorbell rang and it was Steven's main support worker and his boss. I introduced them to Chris and there were lots of hugs and tears as for the first time in months, there was a light at the end of the tunnel.

Chris only met Steven three times but made quite an impression. Whenever Steven does one of his lookalike games, he always compares Chris to the really big people he knows - like Warrior in Gladiators. Chris had a boat that he used to sail in Cornwall and that really impressed Steven, who made up all sorts of stories about Chris going out one day to catch a killer shark.

Perhaps that precisely what he did.

Story Eighty Two - A Date With Cilla

So, a week after Steven's latest escape from the Unit, Hillingdon eventually referred us to an IMCA. They had successfully blocked us getting one after DoLs number one, two and three in April, June and September. In two weeks time, the next DoL was due to be authorised (I'd long given up hope that they might be administered fairly, so an authorisation was inevitable). I've said it before, and I'll say it again, for me, it is one of the biggest flaw of the DOLs scheme - if the Local Authority don't want you to have an IMCA because they don't want their actions scrutinised, it is impossible to get one. You have to be referred by the people insisting on the DOL - you cannot refer yourself.

A few days later, I met our IMCA, Cilla, and we spent an hour going through the story of the year. She had already been to the Unit and picked up their logs and she was specifically interested in the best interest assessments. She took everything away and promised to get back to me by the end of the week. Later she told me that she was buying time - she couldn't believe how bad the assessments were and wanted to show her colleagues. I found it interesting that the Hillingdon assessments were so far removed from what a best interests assessment should be like, they made Villa disbelieve the evidence of her own eyes.

A week later, Cilla came with me to meet the 4th best interest assessor. I love Villa. She reminds me of Lieutenant Columbo. She has that bumbling style like him, sheets of paperwork all over the place. I could see the BIA smugly thinking "nothing to worry about here". And then Villa would go for the jugular. Repeatedly. My eyes filled up with relief - after 10 months of me against a posses, it was so heartening to have a professional fight Steven's corner. It didn't stop the 4th DOL being authorised but I think it showed Hillingdon that an external scrutineer was on their case.

Towards the end of November, Cilla came with me to the meeting where Hillingdon announced they had agreed the tender from the hospital in Wales and they wanted to start planning the move. Cilla was horrified and told them that their assessments would be deemed illegal when we got to court. It was the first time I considered that they might actually breaking the law.

In a way, Cilla had no impact on Hillingdon. Their arrogance saw her as an inconvenience to be swatted away. But Cilla started a process that built my confidence and quickly led to the court hearing.

I'll leave the last word to Justice Peter Jackson (who called her report "the first best interests assessment that deserves the name") and his opinion of the formidable Cilla, the woman who saved Steven's life:

"On 18 November, the IMCA delivered her report. It is an impressive document. For the first time, professional support was given to Mr Neary's arguments. The previous best interests assessments are subjected to analysis. The IMCA's conclusion is that Hillingdon was potentially not acting in Steven's best interests by refusing his father's request to have his son live with him at home. The fact that this is the most important relationship in Steven's life was noted. No evidence had been presented to show that the care he had given to Steven over the years was no longer appropriate. A return home, even as a trial period, should be considered. Further depriving Steven of his liberty might lead to emotional harm. Steven's wish to return home was rational and understandable and Mr Neary had demonstrated in a number of ways his willingness to work positively with professionals involved in providing care for his son"

Thank you Cilla, from two very grateful men. 

Thursday, 5 June 2014

Story Eighty One - Gauntlets

Like a Westlife song, I'm going to do a key change from now on. We have now reached Steven's last two months in the Unit and things certainly changed for the better. I've said before that Steven's barefoot escape on the night of the Take That reunion was certainly a catalyst for the things that followed. He threw down a gauntlet and it was important that I picked it up and ran with it.

The escape prompted another round of press interest. BBC London, in the shape of the formidable Kurt Bahling, took up the story. One morning in my flat, Kurt was on the phone to Hillingdon and their press officer tried to take the moral high ground by telling Kurt that he was "only interested in the jinx and japes" (whatever that meant). Kurt's final piece to camera was great: "We asked Hillingdon how a young vulnerable man in their care happened to wandering the streets barefoot and in his pyjamas on a bitterly cold night. Hillingdon replied that they couldn't comment as they were committed to acting in Steven's best interests. Kurt Bahling. BBC News, Hillingdon". Priceless.

I was also invited on to the Victoria Derbyshire show and was allocated 15 minutes after they'd interviewed the latest Alan Sugar Apprentice that had been fired. Victoria was very kind and fair and has invited me back several times since.

The local paper also did a piece which broke their record for the number of comments left by the readers. All, bar one, were totally supportive. The only negative one must have come from someone in Hillingdon - the writer knew too much about Steven to have come from anywhere else. Typically, the tone and intent was to discredit me and blacken Steven's character.

Heather Mills from Private Eye wrote another great piece, linking our story with the tragic story of Harry Horne Roberts, a 21 year old autistic guy who had died in a Unit earlier that year. The Unit had put him on a powerful medication regime but not told his parents. Harry's weight piled on and he died from heart failure.

And the powerful blogger, Anna Racoon, got interested. Anna has connections with the Court of Protection and had made it her mission to make the Court more open. I guess our case was just what she was looking for but she blasted our story across the internet.

The National press started to contact me. And after months of trying to get legal representation, some legal firms also contacted me, although it didn't immediately lead to any action.

So, within three weeks of Steven escaping, the story had broken nationally and after trying to get an IMCA to help us to challenge the DOL for eight months, Hillingdon finally referred us to the IMCA service.