Trussed Up With Trust

Every now and then, something happens that feels like a slap around the face with a large soggy moggy. It’s the recognition of the enormous amount of trust I have to place in so many people. It’s one of the biggest trusts I can ever imagine giving – the trust in keeping my son safe; protecting him from an often hostile world and from his own vulnerability. It can’t be done of course but that doesn’t stop my trying and investing so much energy and love in the pursuit of his protection. Fortunately, my natural instinct has always been to trust and I’m prepared to accept the hurt that accompanies those times when my trust is abused. I also know that when my trust has been broken, I can be quite brutally ruthless and will want that person’s guts for garters. I will never trust Hillingdon council again. I’ve received the official apology (albeit a mealy-mouthed one) and have had to find a way of working with them cooperatively. But I can never forget that the director of social care authorised a press release the day before the hearing which had the sole purpose of presenting Steven in the worst possible light. I will never forget the judge, on being shown the press release, throwing his hands up in the air and despairing: “This is about a vulnerable man in their care”.

But that is raking over old, hot coals  that I cannot change. Trust, or the breach of my trust has surfaced again big time this week, as one of Steven’s longest-serving support workers has been “let go”. I’ve had a few days of beating myself up that I wasn’t brave enough to act sooner and also had to deal with the embarrassment of how much I’d been played by the worker over the weeks.

To grasp how powerful this need to protect is, one has to understand that to Steven, like the majority of people with autism, the world can be a frightening, anxiety provoking place. To be at the mercy of situation after situation that you cannot make sense of must be terrifying. So, to protect himself from this terror, Steven constructs and relies on routines. Hundreds and thousands of routines; some of them sadly unrealistic. And if any of these routines get broken, the fragile shield cracks and the naked vulnerability of this strapping man is exposed. It is unbearable to observe; as I guess it is as unbearable to feel. So, I set myself the impossible task of trying to maintain all the routines. Some are easy: I can always find a shop that will have some lamb chops, so the Saturday tea routine is intact. I can rely on the fact that the lyrics and the video of Take That singing “Relight My Fire” is never going to change. Some of the verbal routines are harder; they require me to have instant access to a catalogue of scripts stored in my brain. Sometimes, if I’m tired, my search function lets me down and that can have hairy consequences. (You’d think I’d know after several hundred viewings the follow on line to Sybil Fawlty’s “Burst his zip today Andre”). It gets even hairier when the reliance on the routine depends on other external sources; from a character taking a break from a soap opera, to one of Steven’s friends at the Mencap pool remembering that Steven likes to serenade him with “Heartbeat” as they greet each other.

The other thing that presses all my buttons is when people use Steven and his condition to cover up their own stuff; their own indiscretions. It happened all the time at the positive behaviour unit. Take the incident that led to the council issuing the first deprivation of liberty authorisation when Steven escaped from the unit. There has never been any acknowledgement that they failed in their duty of care that day. Worse, they used the incident as a cover for their real agenda which was to move Steven away. I can’t tell you what a relief it was when Justice Peter Jackson saw straight through that manipulation.

That brings me back to the latest dent in my trust this week. Three weeks ago, Steven went out for his normal Thursday afternoon train ride with his two support workers. It’s the same routine every week; a trip from one end of the Metropolitan Line to the other, getting out at Aldgate for a bag of salt and vinegar crisps. He loves it. I got home from work that Thursday afternoon and there was nothing untoward reported. The following Monday one of the support workers approached me and told me that he was very uncomfortable about the actions of the other support worker during the train ride. His story was that they had to change trains, Steven became agitated by the change to routine and the second support worker put them all in a dangerous situation. He convinced me to cancel the train journey for the duration of the Olympics as he felt it would put too much pressure on everybody. The focus of the conversation though was Steven’s behaviour during the trip. As the days passed, I became more and more disconcerted that the second support worker wasn’t mentioning the incident. Eventually, I showed him the other guy’s report and he got very upset. The reason that he hadn’t reported anything was because there hadn’t been anything to report. Yes, Steven had become anxious but he felt that any potential problem was contained. he pointed out that the reason the whole situation came about was that the first support worker wanted to leave work early that day and wanted to cut short the journey. Sod the routine. Sod Steven’s distress. He wanted to leave early but didn’t have the balls to ask. And just like the DoL story at the positive behaviour unit, he tried to use Steven’s response to cover up what really happened. I can’t be doing with that.

What links Hillingdon and this support worker in their arrogance is that they totally overlook that the truth usually comes out – from Steven himself. he doesn’t understand the concept of a lie and in his own idiosyncratic way will find a way of communicating the truth. A few months after Steven returned home from the positive behaviour unit, he suddenly said to me one night: “Steven Neary’s feet got all muddy”. the ensuing story consisted of six sentences but told the whole story. After his several escapes from the unit, the staff decided to lock his shoes away in a cupboard in the hall. he had to ask for his shoes whenever he went out. It appears that on this particular day, one of the unit staff was a nasty wanker, who for the sake of argument we’ll call “Nick”. This was Steven’s six sentence story:

“Steven Neary’s shoes was in the garden”.

“Steven Neary went on the muddy grass”.

“Nick threw Steven Neary’s shoes outside in the raining”

“Nick was laughing”

“Steven Neary got his shoes back”

“Steven Neary’s happy now”.

It cuts me up recounting that story but I hope it illustrates that my capacity to trust is constantly on a knife-edge. That chap was always very agreeable whenever I met him. There would have been absolutely no point in making a complaint because in all likelihood it would have led to Steven being abused further. I don’t mean in further incidents like that; Steven was at home by now anyway. No, for me, it’s as big an abuse to deny him his version of his reality and to have his vulnerability turned on its head, so that he becomes the problem.

Thank goodness that I have several people around me that I trust completely. Without them, the terror of how easily Steven’s vulnerability can put him in danger would be quite unbearable.



When I’m Dead And Gone

Yesterday was my day off from work. I had big plans: housework first thing; then off to an early showing of the new Batman and then home to do a new tape with Steven. (We’re working through the alphabet at the moment and yesterday were up to “J”, so anticipating The Jam, Just Jack, Johnny Cash amongst others). The carpets remain unhoovered, Tom Hardy missed my presence in Studio 2, but John and Edward got an airing. Instead, I found myself sitting in front of my computer screen, paralysed by the Serious Case Review report into WinterbourneView (see here: I swung between sobbing and barely controllable rage. I had to have four attempts before I could finish it as I found it so emotionally draining. A serious thumbs up to the author, Dr Margaret Flynn, who didn’t pull any punches at all.

There have been several commentaries on the report, written much more eloquently than I could. My overriding feeling is what total cunts they all were. Not just the 11 perpetrators of such vile abuse, but all the other cast of characters in this terrible drama. I found myself getting just as angry by the quote from an anonymous Castlebeck director as I did about the violence his (or her) staff carried out. How about this statement for brass neck: ‘We’ve learned our lessons and the review marks the start of  a new chapter for care in our sector.’ That’s alright then. Now fuck off and go back to counting your profits. What sort of spun out society have we become that people believe that kind of statement is okay? On several occasions throughout the report, the author mentions Castleback’s lack of co-operation with the review, falling back on that old chestnut; the information is commercially sensitive. So, commercial sensitivity comes way ahead of the sensitivities of the patients and their families. It’s good we all know where we stand.

What can we say about the South Gloustershire safeguarding adults team? Not a lot. Except, you’ve got your priorities all wrong and if you spent a little less time arse covering and more time looking after your clients, perhaps…… It galls me but doesn’t surprise me that the only time they really sprung into action is when there were complaints made about patients or their families. Those complaints about patients or families were always acted upon but complaints about the staff etc just hit an arse covered wall and died. I’ve learned over the last few years dealing with adult social care that there always has to be a human shield, and invariably that shield is either the lowest ranks or the situation gets completely flipped over so that the aggrieved becomes the aggressor. When Steven was attending the Day Centre back in 2008, he was assaulted by one of the staff there; he was kicked three times on the leg and had a cup of hot coffee poured over him. The attacker who was quite senior and the shift leader tried to cover it up. It took two junior members of staff to report it and persisted to such and extent that it couldn’t be ignored. We weren’t informed of the attack until 8 hours after it happened; even then the social worker presented it to us anonymously, so I (to my shame) assumed it was another service user that launched the attack. The two junior members of staff had a very hard time and a lot of pressure was applied to them to dilute the incident. Nevertheless, the senior staff and managers could use the attacker and the shift leader as their shield. In 2010, when Steven was at the positive behaviour unit, I insisted that Steven’s normal support workers continued working with him. But in the authority’s eyes, they were lower than the unit’s own staff, so they became the new shield – if anything untoward happened, they carried the can. Two of Steven’s workers were suspended over an incident where they were put into a terrible situation by the unit’s shift leader. A week later, two unit staff had a massive argument in front of Steven and one threw a heavy object at the other, smashing a window. Nothing happened to either of them. All of the managers and social work staff involved in the year of Steven’s illegal detainment are still there in the same posts; there were no consequences for them at all.

Now comes the really hard bit to write. It’s not a new thought, prompted by the events at Winterbourne; I’ve had sleepless nights for several years over the issue. What happens to Steven when I’m dead and gone. Every time I go to a meeting with social services, at some point during the meeting, I am asked the same question: “What are your plans for Steven for the future?”. I’ve probably given the same answer over 40 times now but it doesn’t stop me being asked again. Perhaps, I havent given the right answer but they don’t want to tell me that? Perhaps, it’s just a box to be ticked and my answer is completely irrelevant because they already know the answer in Steven’s case? Who knows? For what it’s worth, I’d like (and Steven would too) for Steven to have his own place with live in support. he finds mixing with his peers very challenging, so for me, a multi occupied place would be out of the question. Steven could either continue to live in our privately rented property (landlady has already acknowledged that would be okay) or at some point, Steven would have the home we own that his mother currently lives in.

But deep down, I know that if I drop dead tomorrow, none of that will happen. I know that by the time I’m being laid out at the undertakers, Steven will be in a car to that care home/hospital in Wales that the council wanted to send him to in 2010. His links with everything he knows and loves will be terminated as quickly as my life had just ended. And wherever he ends up, he could find himself in a lovely, empathic place or he could find himself in another positive behaviour unit. Or another Winterbourne View.

And it’s too painful to write any more on the subject

He Who Pays The Advocate, Calls The …….

Yesterday, there was an intriguing comment left on my blog from a man who lives in the same borough as me. Basically, back in June, he wanted to book a place on the annual local carer’s conference, organised and run by our local authority. He contacted the LA to arrange a place but was told that the bookings must be done through our local carers organisation. He did this but was told however, that as he is not a member of the carers organisation, he was not entitled to a place.

Whys has this stirred me into writing? I belong to several carers groups and forums and one theme that has cropped up with depressing regularity over the past couple of years is how the many large and local carers and disabled organisations that exist, seem to have become increasingly detached from serving the needs of the people they were set up to represent – the carers and the disabled.

If you look at any of the large organisation’s websites, you will see them declare advocacy and support as two of their main services. So, why does it feel that these organisations have become more remote when the need for their advocacy input has never been greater.

When I was in the midst of my battle in 2010, I approached all the major organisations for help: the NAS, Mencap, Carers Uk etc. I also contacted all my local ones as well. None of them were able to offer any help. In fact, it was the local organisations that felt the most cold towards my desperate pleas for help. Funnily enough, once the final judgement had been handed down, all the national organisations made a statement about the case, along the lines of how awful it had been that such a thing could happen; how difficult it had been for me to find support and what a landmark moment this was for disabled people. Perhaps that’s what their role is now: to proclaim rather than to provide.

I remember walking past my local carer’s office last year and seeing a huge poster in the window, celebrating its partnership with the Local Authority. I felt uneasy. I’m not saying for one moment that the authorities and the local groups shouldn’t work together – that would be completely counter productive. But I do question whether a client can receive truly independent advocacy when these organisations have such close relationships.

Lots of local authorities farm out some of their services to local organisations. A friend of mine has been involved in a ridiculous boomerang game because her LA have given over their carers assessment service to the local carer’s organisation. Ones does the assessment; the other holds the purse strings. Goodness knows what the problem is but eight months after having a “preliminary carers assessment”, no obvious outcome has been identified or acted upon. This same carers agency receives over 75% of its funding from the LA – a large proportion of that 75% coming from their annual carers grant, which I’ve always believed is meant to be for the carers. I’m pretty sure that’s what central government intended when they allocate these funds to the LAs. So, if my friend wants to challenge this inactivity, where does she get her advocacy from? She won’t be able to get it from the obvious place – the carers agency because they have become an intrinsic part of the process. Item two on this agency’s mission statement is: “providing carers with support and advice to access their rights”.

The government’s white paper on social care makes hardly any mention of advocacy at all which is very worrying. But even if advocacy had been more prominently on the agenda, who is going to provide it from a totally neutral position. Challenging authority is a lonely, frightening business. It’s made worse if you walk through the doors of a place purporting to support you, only to find they are indirectly or directly, part of the authority too. It doesn’t do much for your feelings of hope.

In a Panglossian world, every vulnerable person should be offered an advocate – an independent one who could really act in their best interests without a fettered agenda. Not every offer would be taken up, which is fair enough, but for those that did, the world might seem less lonely or frightening.

If there was the choice between central government issuing grants to LAs who in turn issue grants to local agencies to support the disabled and their carers; or central government issuing grants directly to advocacy services to provide support, I know which one I would choose.


Consultation, But Mind The Elephants

There is a delicious juxtaposition of articles in my local paper today; the excellent Uxbridge Gazette.

The front page carries the story of the ongoing battle of a group of committed families to challenge the London Borough of Hillingdon’s decision to close three of its day centres and replace them with one smaller “hub”. The decision would mean that the number of people using the new centre would reduce by 50% and important relationships that have been built over several years will be lost forever. The families believe that the consultation process may have been unlawful and last week, permission was granted by the High Court for a full judicial review in September. surprisingly, at the last-minute, the council have backtracked and have re-opened the consultation process. The article carries the headline: “Be open with us on day centre closures”.

Flick over a couple of pages and we find the story of the High Court ruling last Thursday in the damages claim of Neary vs Hillingdon. Last week, a Court of Protection judge declared that Hillingdon should pay £35,000 to Steven for the year he was illegally detained in their care.

What strikes me as interesting about these two articles is the statement they make about Hillingdon’s track record on consultation. In the original Neary Vs Hillingdon judgement June 2011, Justice Peter Jackson comments several times on the duplicity of the council; they led Steven and I to believe that Steven would be returning home, whilst behind the scenes, carrying out a quite different agenda of planning to move him hundreds of miles away. One of the reasons why the judge found that all four deprivation of liberty authorisations were unlawful was that they didn’t record Steven’s or my views. we were asked but our wishes were never included on the orders, much less acted upon. A superficial consultation. I know, from talking to the campaigners of the day centre closures, that the phrase “superficial consultation” is far too generous – the decision had long been made.

Another interesting feature of the two stories is the wonderful spin used by Hillingdon. In Steven’s story, the deputy director of social care, Moira Wilson says, “The council is pleased a settlement has been reached which is satisfactory to the judge and the Neary family”. The inference of this statement is that Hillingdon have been virtues of benevolence and that it has been the court and the Nearys that have caused the claim to take a year to reach settlement. A teensy weensy bit disingenuous Ms Wilson? For over  a year, whatever figure the Official solicitor has proposed, Hillingdon have shrugged their shoulders apologetically and warned that they would have to claw back the damages by charging Steven the full rate for his care package. The claim could have been settled out of court without incurring any costs; there have been many opportunities over the last year for that to happen. Another needless hearing that will be added to the already enormous costs bill that Justice Jackson has ordered Hillingdon to bear. And there’s another hearing to go. The Official Solicitor feels that because of the underhand way that Hillingdon have behaved all the way along, it is in Steven’s best interests for me to be appointed his welfare deputy. It’s a massive irony because Hillingdon sought to be appointed his welfare deputy back that first hearing in December 2010. Eighteen months later, they have shown themselves to be so untrustworthy that the Official Solcitor’s position is that Steven needs extra protection from them for the future. Another costly hearing.

Back to the front page and the decision of the council to reopen the consultation process, the leader of the council, Mr Puddifoot speaks: “Whilst I have the greatest respect for those involved in the legal profession, I have no intention of allowing public funds, either from the legal aid budget or the council’s social care budget, being utilised where it is not necessary”. there you go then – take that you money grabbing solicitor bastards. You couldn’t make this up!

Mr Puddifoot’s statement exposes the almighty pickle councils get into when they make an “efficiency savings” decision and then try to present it as something completely different. There’s no good reason to close three popular day centres other than money; yet it has been presented to the families as “promoting service user’s independence”. Hiding the real agenda is unsustainable and makes the illusory agenda ever more ludicrous. The same with Steven; every battle I have with the LA (whether it be about respite or the normal day-to-day care package) is about money but the discussions become farcical because we dare not speak money’s name.

I don’t see this ever changing because the truth can never be owned. So, in the meantime, public funds will continue to be utilised for legal fights in expensive court cases and day centres will continue to close and care packages will continue to be cut.