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The Film

I’ve spent the last two days with a film crew. The Human Rights organisation, @Rights_Info wanted to make a short film about the ordinariness of human rights and felt that mine and Steven’s story fitted the bill. I was happy to go along with this.

The film will be released next Friday, the 9th June, to mark the sixth anniversary of Justice Peter Jackson handing down his judgment in Steven’s case.

By the time I got back to my flat last night, I felt exhausted. There was nothing sexy or glamorous about doing a ninth take of me walking along the canal towpath. We didn’t get beyond four takes of me preparing Steven’s fresh fruit salad for breakfast because I ran out of bananas to chop up. I’ve prepared my story for the neighbours who were bemused by seeing me leave my front door seven times whilst a camera crew walked backwards into the road. I’ll tell them that this year the XFactor is having an over 55s category and this was my introductory piece before I wow Sharon Osbourne with my Karma Chameleon.

Alongside the exhaustion, I felt so proud of Steven. I’d warned the film crew that whilst they could get me to do several takes of staring wistfully over the riverbank, that wouldn’t work with Steven. Keep the camera rolling, your fingers crossed and you may get a bit of footage. The crew were fabulous. They got Steven immediately and knew exactly how to handle what could have been an anxiety provoking experience. They ended up with footage of Steven opening his front door to let me in, some shots of Steven on his sofa next to the life size cardboard cut out of Mr Bean whilst talking about Fifteen to One. I hope they got the shot of Steven kissing my head but they certainly got a long piece in his kitchen of Steven chatting about Shane from Boyzone.

Every so often, as I observe Steven living his ordinary life, I get pulled short, suddenly thinking of what might have been. Everything that Steven now values about his life wouldn’t have happened if he was in that Welsh hospital. The hot tub is being delivered on Monday and Steven was beside himself with joy when he saw the pictorial timetable I’ve mocked up of who will be coming for a soak on what days. A week long joyous experience that would be impossible in an institution. This week, I learned about a guy who has been in an ATU for 16 years. He was 24 when he was admitted; he is 40 now. It’s impossible to reconcile all the normal, ordinary things he’s missed out on over the past 16 years.

Someone just tweeted me to say that the film could be important in delivering the message that living in one’s home always trump’s living in an institution. I don’t believe there’s anyone who genuinely believes that an institutional life can be better than living in your own home. I think we can see straight through the Responsible Clinician who argues that detention in an ATU is necessary for someone with “extremely complex needs”. We know those sort of statements are as vacuous and disingenuous as one of Theresa May’s most blandest soundbites.

The next 7 Days of Action campaign kicks off on 19th June. The theme this time is “The Trade in People”. I’ve seen some of the material and the amount of profit to be made from medicalising and detaining learning disabled people is gob smacking. It’s not about complex needs: it’s about making private providers nauseatingly wealthy.

Perhaps a film of me peeling a satsuma and of Steven showing off his Gladiators posters, may be an antidote to that myth.

Swinging

The last three days encapsulates perfectly the totally destabilising mood swings I experience whenever I have an encounter with Services (Non Services). It’s not a permanent state (thank goodness) but it is a familiar state and my only coping mechanism is to try to withstand the swings in the knowledge that they will pass.

Tuesday was horrid. Already feeling very anxious about the upcoming inspection of Steven’s house and how his life can be so fatally misinterpreted, Steven got a letter telling him his housing benefit had been cancelled from the day he moved in and that he owed £4k. Of course it was an error. But my history with the LA over errors has been frightening, albeit with successful outcomes. Twice in six years we have ended up in court because the LA sought to defend their errors at all costs. The financial cost to them has probably been in the region of £100k but that hasn’t mattered to them at all. Reading the overpayment letter takes me back to that place and I’m left shaking with fear and keeping a bowl by the side of the sofa because I feel so nauseous. Just three hours sleep on Tuesday night adds to the wibbly wobbly sensation.

Yesterday, the inspector called and it’s all good news. Steven will now get a fixed secure tenancy; the shower that has caused so much damage to three walls will be replaced and I get an acknowledgement that the cancelling of Steven’s HB is an error (“We received an indicator that the rent reference has changed”). Faster than the speed of sound, I come whizzing out of the dark scary space and I want to play Echo Beach at a seriously high volume. I stay on Planet Whizzy after I speak to the producer of a film who wants to make a documentary along the lines of “a day in the life of a Human Rights Act success story. We’ve been discussing it for a while now and yesterday we agreed the final shooting schedule for next week. In a slightly manic phase of my swinging, I go to Tesco and buy a roast beef joint and a bottle of wine to toast the day. Gently pissed, I retire to bed at 10pm.

Today, I woke up at 6.30 feeling exhausted, physically and emotionally. It’s now 8.55 and I’m still in bed. I don’t feel up or down, just knackered. I check my social media and have messages like, “You have to make a formal complaint about how you’ve been treated”. I pull the duvet up tighter and Martha & The Muffins have become a lot more muted. I’ll feel like this until the weekend. Hopefully there won’t be another encounter with Services between now and then or the whole rollercoaster will start up again. Without those encounters, when life ticks along, I actually feel quite a strong and stable chap.

Trembling, gut wrenching fear – whizzy, satisfied joy – unable to leave my bed exhaustion.

That’s my experience of services.

My My, DoLS Meet Their Waterloo

WARNING

This post contains some distressing images of a person being deprived of their liberty.

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On Friday, we chose the least restrictive option for Steven’s care (There was only a celebrity Storage Hunters special on the telly) and spent the evening in the company of a counterfeit Agnetha, Anna Frid, Bjorn and Benny.

We lived dangerously because we didn’t get this deprivation authorised but Steven did demonstrate his capacity by inviting me to tag along.

The conditions we attached to this DoLS was to sing and dance and clap as loudly as possible.

We achieved those conditions.

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You may agree with us that the best lookalike out of all of them was the drummer, dressed up as Napoleon in the final photo, who was a dead ringer for Barry Manilow.

Back to the gilded cage.

The Great DoLS Checkmate

Apologies. It’s another post about the Community DoLS experience. I suspect this one may run and run (possibly as long as The Mousetrap).

On Tuesday afternoon, Steven had his Mental Capacity Assessment. The big question at stake was: “Does Steven have the capacity to consent to his care arrangements?” In other words, does he agree to a support worker accompanying him to buy a strawberry milkshake?

Before the assessment, I had an interesting and moving chat with the two support workers who were to be present at the assessment. We agreed that Steven does have the capacity in this situation but what he doesn’t have is the language skills to demonstrate that he has capacity. He can demonstrate his capacity and consent through his actions and by his basic instructions but gets confused and anxious when he’s asked to explain it. This anomaly doesn’t figure on the radar of the assessor.

I was browsing Twitter after the chat and came across a tweet from Lucy Series. Lucy was commenting on a post from Alex Ruck Keene and observed: “Yes, mental capacity tests privilege the articulate. Unfortunately, it’s mostly the articulate who engage in debates about these laws…” 

Alex had written a paper entitled “Is mental capacity in the eye of the beholder?” and the paper included the killer line: “We need to look less at the person being assessed, and more at the person doing the assessing. We also need further to look at the process of assessment so as to ensure that those who are required to carry it out are self-aware and acutely alive to the values and pre-conceptions that they may be bringing to the situation”.

This reminded me of an event I attended a couple of years ago. I had told the Get Steven Home story and was then asked me to meet a small group of Best Interest Assessors for an informal chat. I was shocked by how little supervision they receive in carrying out their vital and potentially emotional role. I compared the pittance they get in terms of supervision with how much I receive in my counselling role (2 hours per week). I love supervision – it can be very challenging but that’s the point. It’s vitally important that the professional reflects and examines their own values and belief systems and how they may be impacting on their professional role. It’s also uncomfortable but crucial to have a space where a colleague can say, “Hang about a minute. You’re missing something fundamental here”.

I digress. The assessment lasted less than five minutes. Steven had put on a Gladiators video just before the social worker arrived. He would have been happy discussing Cobra’s performance in Hang Tough but was not inclined to probe his capacity on other matters. For the time being, the matter rests there. I suspect they will decide that Steven lacks capacity. Not because he does but because it’ll make their job a lot easier. How many social workers have the time these days to get to know how Steven communicates and to fashion an assessment that reflects his communication style? With distrust of families so cemented in social care functioning, how can a social worker listen to the arguments that me and the support workers were making to support our theory that Steven has capacity, earlier that day? It ain’t gonna happen.

That was that, or so I thought. Then last night, Neil Allen tweeted the Court of Protection User Group Minutes (https://courtofprotectionhandbook.com/2017/05/17/cop-court-user-group-minutes/)

Neil made the observation: “Around 200 Re X cases have been stayed as a result of the deadlock between judiciary and government”.

Re X relates to the judgment handed down by Sir James Munby and addressed the issue of Community DoLS. His view was that P (the person subject to the deprivation of liberty) didn’t need to be a party to the court application. Don’t forget, that for every community DoLS a Local Authority carries out, they have to pay £400 to have the DoLS authorised by the court. An appeal was made and although Munby’s judgment wasn’t formally overruled, the three appeal judges cast enough doubt to throw the process into even more disarray. Their view was that to exclude P from the application wasn’t on.

This is the deadlock that Neil refers to. What has happened is that all these Community DoLS applications are ending up in a giant pending drawer somewhere in the Court of Protection.

What this means in practice was confirmed to me by Victoria Butler Cole. The applications are indefinitely frozen. The required court authorisation for the DOL is not in place. And there is probably no realistic prospect of the person challenging it. The LA submits their application and pays the fee and then the case is immediately stayed (frozen) because there is no-one to represent the person the case is about.

Get that folks. Nothing Happens. Sod all. Hours have been spent assessing and compiling the application. £400 has been paid to the court. And then Nothing. Probably forever.

The sheer waste in all this scrambles my brain. The anxiety this process generates for P and their family is massive. The intrusion into normal family life is huge. The framing of the process goes against everything that the person’s life is actually about.

The community DoLS process exemplifies everything that is wrong with social care.

And nobody gives a monkeys. The social care professionals will continue to complain about the extra work all this entails. The court will continue their standoff.

I could go on but I need to stop. I need to do Steven’s haircut so that he looks all shipshape and Bristol fashion when we deprive him of his liberty tomorrow and take him to see an Abba tribute band.

This is what being deprived of your liberty in your own home looks like:

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17 Years Since Cats

Steven was watching one of his junior school videos on Sunday. This one was from 2000 and his class were doing Cats.

I find watching them unbearably sad.

There were seven kids in the class.

Steven played The Rum Tum Tugger.

Mr Mistophelees is in the supported living place round the corner from us where everyone is in bed by 7pm.

Mungo Jerry died in 2010 of an impaction.

Rumpleteezer’s parents died a few years ago & she was moved to a residential home in the Midlands.

Skimbleshanks has been in a secure unit on the south coast since 2011. He was moved there a couple of weeks after Steven’s court case. Same care team.

Old Deuteronomy and Jennie Any Dots have disappeared off the radar.

At one point during the video, the camera pans round the audience and we parents are singing and clapping like crazy.

We were proud.

And we didn’t know a bloody thing.

 

Update:

As Steven would say when he does his impersonation of Bill Hislop in Muriel’s Wedding, “Strewth, what a coincidence”.

Trolling round the shops this morning I bumped into one of Steven’s old classroom assistants from senior school. We didn’t have long to chat as she was on her way to “the Chinese herbalist with my bladder” (she said I could write that). But the good news is she told me that Jennie Any Dots is still living and thriving in the borough.

2 out of 7.

The Probation Officer

Blimey. On the same day that I wrote a post about the arrogance of Hillingdon’s press release when we were in court, Steven received a letter from the Housing Manager. This is what it says:

“Dear Mr Neary

I am writing to advise you that I will be calling to see you at home on 25th between 9am and 12pm.

The purpose of the visit is to advise you whether or not I am satisfied that you are conducting your Probationary Tenancy in a satisfactory manner. The outcome of this visit is to determine if your tenancy should progress to a 5 year Flexible Secure tenancy”.

That’s it.

I know I’m very sensitive in these matters but the letter strikes me as oozing with power.

No checking out whether the 25th is convenient.

No thought as to whether a learning disabled person would understand the content. What is a Flexible Secure tenancy? Sounds a bit contradictory to me.

Steven’s future accommodation rests on her satisfaction alone.

What will satisfy her? What might dissatisfy her?

I saw a report of an inspection visit to a learning disabled person’s home the other day and it had the killer observation: “Not a lot of uncleanliness”. I worry that that is the sort of frame the Housing Manager may be looking through.

So, 11 days of worry before the big inspection. Nothing to ward off that worry besides lots of hoovering and dusting.

And the hope that the complaint from the neighbour before Christmas has died down.

We’ve never met the Housing Manager. Twice since Steven moved in, she has arranged appointments but not turned up.

I’m assuming she knew the state the place was in when we got the keys. I’m hoping she is satisfied by the improvements we have made.

Before:

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After:

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Spin & Blame

I’ve been reading quite a bit this week about the tactics used by the State to protect their reputation when something goes wrong.

This week, the media reported again on Southern Health and the fact that HSE will be prosecuting them over the death of Connor Sparrowhawk. This gave the Trust the 1000th opportunity to apologise directly to Connor’s family but for the 1000th time they chose to give their apology to the media, rendering their words a complete non apology. Sloven have repeatedly used these opportunities as a chance for some reputation management and have failed the sincerity test everytime.

I gave an interview the other day about Steven’s case and for the first time in years, I reread the judgment before the interview. Reading the section about the leaked press release took me right back to that day in court.

At lunchtime I was sitting on the wall outside the High Court eating my sandwiches. One of the journalists came and sat next to me and showed me the press release that Hillingdon had sent to all the leading media outlets the day before the hearing started. As I read the paper, I started to feel nauseous and couldn’t finish my lunch. The intention of the release was clear – to present Steven in the worst possible light and for somehow to present Hillingdon as the victim. The victim of a young man with “very challenging complex needs” and a father who “refused to cooperate with the Authority”. I’ve never kept the press release, throwing it away as soon as I got home. I wouldn’t publish any part of it even if I had held on to it.

The journalist was interested in my response to the release. I had by now spent 18 months listening to and reading Hillingdon’s narrative about Steven, so although I despised the language, I wasn’t shocked by it. Because of my apathy towards it, the journalist was forced to up the ante and he leaked it to the barristers and the judge. Their reaction brought home to me how much I had become desensitized to the language.  All in all, the last day of the hearing took a completely different direction and we stayed in court until the early hours of the evening as the judge tried to get to the bottom of who had wrote the release and their intention. As had been the case all week, this proved very difficult as nobody from the LA would take responsibility for their actions.

The judge called Hillingdon’s Head of Communications into the witness box and appealed to her to try and understand the LA’s positioning. In dismay, he said, “But this isn’t about your reputation. This is about a vulnerable young man in your care”. It hit the nail on the head – to try and salvage some pitiful reputation, they were prepared to throw me and Steven to the wolves.

Here is the paragraph from Justice Jackson, where he addresses the press release. Never has an LA been so trumped as their horrid methods of PR were outed:

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

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