The Keys

You wait months for a decent story about a set of keys and then two come along at once….

I read a post on social media from a parent whose son is due to be discharged from an ATU into a home of his own, just around the corner from his parents. The mother was unhappy because the LA and the provider company have both refused to let the family have a set of keys to the son’s house. Their argument, as usual, being “independence, independence, independence”.

Fair enough. It’s not okay for a family to think it’s okay just to walk into a learning disabled person’s house. The person is an adult and has a right who he/she invites into his property. It’s not the family home. When I left home, I don’t remember handing my keys back but whenever I visited Dad, I always rang the doorbell.

However, is there something buried away in this ruling that perpetuates the “not quite human” beliefs of services? Most people give a spare set of keys to someone they trust for a number of reasons. My sister has a set for both my flat and Steven’s. We might lock ourselves out. We might lose our keys (see second story). We might want someone to look out for our house if we’re away. We might want someone to access our house if there’s an emergency. Humans rely on other humans to do things like looking after keys but if you’re not quite human then human traits like love, duty, sharing don’t apply. It may seem a small example but human rights are found in the small places.

When I go to Steven’s I knock on the door. Except for Thursday’s when I let myself in. And every Thursday that I do it, I feel uncomfortable. I get to Steven’s about half an hour before he and the support workers get back from water aerobics so that I can get on and do the support workers wages without interruption. To be honest, the personal budget is a piece of piss these days but it still requires concentration. I need the time to do it without Steven instigating a conversation about Basil Fawlty’s cardigan whilst I’m trying to calculate the tax due for an additional three hour shift. A perfectly valid reason for letting myself in but one which Services would disapprove of.

And now a funny keys story..

When I get to Steven’s on Saturday for my weekend sleepover, the first thing I do is to go to my room and slip into something more comfortable. I leave my two sets of keys on my desk next to the computer and there they stay until I leave on Sunday evening.

Last Sunday, whilst getting dressed, I noticed that one set were missing. My flat keys were where I’d left them but Steven’s were missing. The previous evening Steven had been watching the 1994 Gladiators semi final on YouTube so it was a safe bet that he’d moved them. Obviously I asked him and although he can remember he brought a packet of blackcurrant Chewits in the shop at Ruislip Manor 22 years ago, he couldn’t remember what he’d done with the keys the night before. Me and the support worker spent two hours searching for them. We had all the cupboards out, went through the rubbish sack we’d put out yesterday, searched the front and back gardens in case he lobbed them out the window. Nothing. In the end, I went to my sister’s and borrowed the spare set with a view of getting some new ones cut Monday morning.

Just before I left on Sunday evening, Steven turned the living room lights on. In the corner of his living room sits one of the CD cabinets and on top of the cabinet is a Tupperware box that houses the photos of the support workers that Steven uses for his daily planner. It’s also where Steven puts his house keys when he comes home. I noticed something metal shining in the Tupperware box and it was my keys!

Me: Steve, who put my keys in the photo box?

Steven: It was Steven Neary.

Me: Why did you put my keys there?

Steven: Because Steven Neary is an orderly man.

I think he recognised the keys. Even though his keys are on a Mr Bean keyring and mine aren’t, he must have spotted that the actual keys were the same. And being an orderly man, the keys to the Cowley house go in the Cowley Tupperware box.

I’ll end with Steven’s favourite song from the 1993 edition of Christmas Top of the Pops.


Doing Him Proud

I met an old friend for lunch yesterday. We don’t meet up that often. The last time we lunched was the day after the BBC broke the story of the Mazars report. She’d seen it on the news and was surprised that I had been supporting the Justice For LB campaign. So obviously yesterday we spent a lot of time over our tuna mix salad discussing the H&SE hearing and Southern Health’s fine of £2m. I guess both being counsellors we got stuck into the emotional aspect of being part of the campaign but my mate left me with the thought – “There is something about the way the campaign brought out so many different emotions in the participants, my hunch is that it has changed the way campaigns are run forever”. What did she mean? Was she right?

For my part, being involved with Justice For LB was a complete headfuck. The range of emotions it prompted in me was, at times, deeply unsettling. Some comfortable: some less so. I’ve always preferred funerals to weddings. I can’t keep up the happiness that is expected of you at a wedding. With a funeral, you may cry at the interment but I like the wake part. I enjoy chatting to a second cousin twice removed safe in the knowledge that someone isn’t going to grab my arm and drag me onto the dancefloor to do In The Navy. Justice For LB had me the feeling the same. A deep sadness at the heart of it but also the joy of humanity at its best and the great fun that one can have when engaged in something truly creative. But that is disconcerting and uncomfortable. Is it okay to enjoy something whilst experiencing profound pain? I think this is what my mate meant about campaigning changing forever. When the major charities campaign for something their attempt at “fun” is ridiculously contrived. It is embarrassing and has all the allure of a Pontins knobbly knees competition. Justice For LB was too organic for that. At times it was flying by the seat of your pants spontaneous. The humour was that dark kind that Joe Orton would have relished.

Always present, always there, was Connor. His appalling death ripped you apart but drove everything. Those supporters who had followed Sara’s blog prior to 2013 had come to know and love this unique, quirky, intelligent dude and his personality was stamped all over the campaign. His life brought people together: his death more so. Whatever happened during the campaign one could never get away from the aching sadness of his passing.

Beneath that was the stuff evolving in day to day real time. Every act of violence over five years by Southern Health was not only borne witness to but felt at a visceral level. If I had a £1 for every time I shouted in rage, “You wouldn’t believe what they’ve done now” …. well, I’d be able to pay their fine for them. The indifference of Jeremy Hunt. The inaction of so many bodies. I could go on for hours and I probably will. But the outcome was the same emotionally and I genuinely worried at times how I could contain my anger. The personal (“vindictive cow”) and the impersonal ran together in shocking tandem but I guess providing one type of fuel for the campaign.

Creativity is exciting and the extent of it during the campaign took the breath away. Yet once again it brought up such conflicting emotions. Following George Julian’s live tweeting of Connor’s inquest left one wrung out. Evidence revealing such horror. Deeper levels of pain. But the skill of George’s work was also compelling. I truly felt whilst witnessing her work that I was seeing history in the making. I’ve seen live tweeting of events before but George has raised the bar so high, over such an important issue, that the world can never be the same again. Okay, that may be a bit grandiose but the impact it will have for families in the future will be immeasurable.

When human beings come together in goodness and fuelled by the emotions I’ve already mentioned, what place laughter? My old counselling tutor used to say regularly, “There’s no place in the counselling room for laughter”. He was talking bollocks of course. It’s more than a coping mechanism. It’s about love and being alive. Thank fuck that amidst the rage inducing nonsense of Sloven’s viral quality disaster, we have the unifying memory of woman on all fours puncturing the insult of a CEO’s vanity. Pain and laughter is best illustrated for me that day when the son of one of the board members called Sara a “fucking pest”. It led to a Twitter thread that was so surreal and funny (most of it focusing on the fact the Berrymans live in a house with a moat) I cried and cried with laughter. And then felt guilty that I was laughing over something that started so foul. It was that kind of campaign.

Yes. Justice For LB did Connor proud.

And Connor did all those people from all walks of life who came together proud too.

The Safeguarding Dance

This morning I tweeted the following thought:

“Whenever I mention our encounter with Community DoLS, I can guarantee that I’ll get at least 1 reply that feels I need reminding that disabled people need safeguarding from their families too”.

The ensuing discussion went in several directions and Mark Brown joined in the conversation and posted a link to the most recent set of NHS Digital stats on the issue of safeguarding reporting. The link is below but the key figures for me are 23% of harm was caused by family and 32% by social care staff.

For me it posed the question, how many cases of abuse or neglect or exploitation by the State are referred by the State. If they are the perpetrators then I would imagine them less likely to refer themselves than if the abuse came from other sources (including family).

I wish to state (like I did on Twitter) that I’m not interested in setting up a Them vs Us battle here. But I am interested in trying to find a way to equalise the power dynamic that exists that will lead, inevitably, to more families being referred for a safeguarding investigations than the State itself.

One tweeter challenged me to give examples where the State financially exploits learning disabled people. I kept my reply to my own personal experience (which thankfully doesn’t include the familiar horror stories of benefit sanctions, fitness to work assessments etc). I came up with quite a list:

  1. When Steven was in the ATU, I received a monthly invoice for £118.80 for his contribution towards the cost of his deprivation of his liberty. He didn’t want to be there. The detention was subsequently found to be unlawful. No account was taken of Steven’s expenditure.
  2. Last year, Steven received a bill in April for £185.00 as a financial contribution towards his care costs. This threw me because the previous year it had been zero. When I checked it out I was told that it is not their policy to carry out a financial reassessment every year but it is their policy to “reset” the expenditure figures to “zero” thereby triggering off a full charge. A committee at the council signed off this policy which can have no other motive than to try and trick their clients into paying for something they may be exempt from.
  3. In the same month last year I received Steven’s council tax bill. It was much higher than normal. I checked it out and exactly the same thing had happened as I mentioned in (2). The LA has a policy to remove the “disability marker” each year and therefore the disability discount is removed leading to a full charge. Once again, a committee agreed this policy.
  4. The whole point of being a court appointed financial deputy is to have someone who safeguards the person’s income and outgoings. Yet the disabled person is charged for this service by the Office of the Public Guardian. Before anyone says it, I know that if the State is the financial deputy, the charge still applies but the point is the incapacitated person has to cough up an annual sum in order to be safeguarded against financial abuse.

Those are just four examples of financial exploitation. It needed me (or someone concerned with preventing Steven being ripped off) to stop that happening. If I hadn’t challenged the care charges, the council would have pursued him for a hefty charge that he cannot afford to pay.

Of course, there are other forms of abuse and two personal experiences that still chill me many years later are glaring examples in the disparity in the power dynamic between the State and the family.

Steven was about 13. At the time I was working one night a week teaching counselling at a local college. We asked for and were given five support hours so that someone would help Julie whilst I was out. This was our very first experience of having support staff in our home. Over a period of four weeks a succession of agency staff came for induction and to get to know Steven. One morning after an induction evening the night before we were visited by the social worker. She said that she had received a safeguarding referral from the agency over an “incident” that had happened the previous evening. As had been his routine since he was about 5, Steven used to collect his Toy Story duvet from his bedroom and bring it downstairs to lie under on the sofas as he watched the evening soaps. He would ask Julie or I to sit at the end of the sofa, so his feet were resting on our lap. This was the safeguarding issue. It took ages for the penny to drop. In fact the social worker had to spell it out to us. Even though the support worker had said that nothing was going on, the safeguarding team felt that his evening routine set up the possibility for some sort of sexual activity going on under the duvet.  I remember going to the kitchen to wretch into the sink. The safeguarding investigation went on for about five months. It was terrifying. We had to stop Steven’s favourite, calming evening routine. We had to convince the team that we had learned the error of our ways and were able to set boundaries around sexual activity. In the beginning we tried to put the case that there wasn’t and never had been any “sexual activity” under the duvet but that only led to grave concerns about our parenting and threats of removal. It was one of the most frightening experiences ever.

Compare that to the experience we had when Steven was a “day client” at the positive behaviour unit five years later. One day Steven was assaulted by a member of staff. He was kicked three times in the leg and had a cup of hot coffee thrown over him. You’d have thought there would have been an immediate safeguarding alert raised. Far from it. When the social worker came to inform us of the incident later that day, she led us to believe that it had been another service user that had carried out the assault. It was only by chance the following day that we discovered it was the shift leader. I’m not sure if we’d have ever known the truth if it hadn’t been for someone letting the cat out of the bag. The LA did promise to carry out an internal investigation. They might have done. We were told that we weren’t entitled to know the outcome of any investigation for two reasons: (1) Because it was an internal matter, and (2) because Steven had just turned 18, we, as his parents, had no legal status to warrant being informed. I’m cynical but I’m not sure they even carried out a safeguarding inquiry. It was very hush hush if they did. Steven was lucky because one of the agency staff whistleblew and informed the police and in the end the CPS decided to prosecute. Nobody from the council, apart from the perpetrator, turned up in court that day.

Somebody suggested that I apply to join the local safeguarding board. I could but that misses the point. I might hear stories like our duvet story but I don’t think I would hear stories like the staff assault or the charges for the ATU admission. They wouldn’t get within sniffing distance of the safeguarding board. We know shamefully through Connor Sparrowhawk’s death and Richard Handley’s inquest that the State isn’t very good at recognising neglect they have brought about. Even if they notice it, experience shows that they’re going to pull out all the stops to avoid holding their hands up to it.

I don’t know the answer. I’m not saying for one moment that families never exploit their disabled relatives. I’m not calling to people living in their own homes or with their families to be exempt from safeguarding investigations.

All I’m asking for is an equality of power. Far too easy to paint the family as the villain of the piece and the State as the benign rescuer.

A DoLS Lament

On Wednesday I was invited to the House of Commons to give evidence to the cross party Human Rights Committee who are looking into the proposed changes to the Deprivation of Liberty Safeguards. The panel consisted of me, Graham Enderby, Lucy Series and Alex Ruck Keene.

I think we gave a good account of ourselves and made several important points. Some of the questions seemed to me to be unfathomably vague but I guess that DoLS for you. If you’ve got the time and want to watch the session, you can find the recording here:

Since Wednesday I have been preoccupied with the following two thoughts:

1. Christ. Haven’t we come a long, mazy, crazy way since Bournwood? And

2. If only we had been able to get LBBill on the statute, we’d be in a much healthier place and wouldn’t be needing such a drastic revision of the current legislation.

My first thought relates to the time we spent at the Committee discussing the latest DoLS twist – the Community DoLS. This is where I had most to say and related the recent decision that Steven is being deprived of his liberty in his own home. As I’ve heard Graham say before, “DoLS used to be about getting people out. Now they’re about keeping people in”. I expressed my incredulity that the regime Steven was under in the ATU (seclusion, physical restraint, medication) is being compared and found the same outcome as his life now in the Cowley house.

The “safeguards” bit has been lost (if it ever existed in the first place). I go to many events where the safeguards are put in place to justify a detention or to enforce restrictions. That turns everything on its head though – it’s seen by the professional decision maker as a safeguard for their actions, not the poor sod who is subjected to them. It’s often down to the family or an advocate to argue that the safeguards are intended to protect the person being deprived and ultimately get them out and home.

But it’s lamenting the LBBill that saddens me the most. In case you’ve forgotten (and I’ve included the link below), the starting point of the LBBill was to make it more difficult for the State to remove someone from their home and start the whole deprivation of their liberty.

People don’t drop from the sky into a place where they are deprived of the liberty. They have a home, whatever form that takes. That home may be producing a good experience for them: it may be a not so good experience. Whatever, it is still their home. The State must be forced to demonstrate that it has a bloody good reason to take that person from their home and deprive them of their liberty elsewhere. This is a Human Rights issue and I sometimes think that the whole issue of capacity and “is the person actively objecting” a bit of a red herring. Does it matter whether the person is deemed to have capacity or not? They are still being removed from their home and it doesn’t get more serious than that. I still believe that the State needs to seek the authority of the Court before making such a life changing move.

If the LBBill was made legislation, then DoLS (or whatever their replacement might be) would be a lot simpler. The whole issue of whether someone needs to be deprived of their liberty would be addressed BEFORE it happens. It would provide sufficient checks and balances BEFORE someone is wrenched from their home. All the palavar around capacity, best interests, least restrictive options would be covered BEFORE the deprivation occurs and the whole process would be properly scrutinised.

That’s what I think anyway.

I’ll end on a trivial note. I’ve received quite a bit of feedback from people who tuned in on Wednesday. My favourite is from an old friend I used to train with about 10 years ago:

“Wow mate. You were occupying a fair bit of space in that chair. Looking stacked dude”.

Altogether now….

“You’re so vain. You probably think this committee is about you”.

Every Picture Tells A Story

I mentioned on social media the other day that I have brought Steven a massive monster DVD package for his birthday. It is a 6 disc box set put together by the Arts & Humanities Council and features their 200 best UK music videos of all time.

Adopting a slightly smaller scale, Steven and I have just put together a list of our top 12 music videos of all time. They are in no particular order although you can have a wager at the end which is Steven’s favourite and which is mine. Some of the songs won’t feature on our top favourite songs list of all time but we like the videos.

Off we go.

“Madonna. We don’t play with knives. This is your final warning”

“Oh Gordon Bennett. Chris Martin, you don’t drive your car backwards. Take your silly head off”

“Paul Simon – that man’s got your voice in his mouth. Ask him to give it back nicely”

This next video scares the shit out of me but Steven likes it because it’s got lots of “cheeky monkeys” in it

“Jackki Abbott’s playing hide and seek in the cupboard. Like Steven Neary when he was in Gilbert Best’s class”

After Steven saw this video it made such an impression on him that we had to sing it each time we went in a public toilet. I raised a safeguarding alert and we don’t do that any more:

“Bono. We don’t play at airports. Do you want the airplane to knock your head off?”

“Keep going Fran. Do your exercising and you’ll be all fitter like Steven Neary”

“Want to see Norman Cook’s face. can’t see Norman Cook’s face”

“Siobhan want’s to take John up the big stairs to heaven. Like Grisabella Cat in Cats”

“Richard Ashcroft – we don’t walk on cars. You might fall off the roof and lorry might run you over”

“Tom. Bowls are for goldfish. Not for men’s heads”

The Unexpected Crisis

I find it very difficult to make any sense of another depressing week on Planet Social Care. This week we heard the heartbreaking news that Eden Norris has been readmitted to an ATU, just three months after he was discharged from an eight year detention. Apparently there had been some “difficulties” over the past couple of weeks and an “increase in challenging behaviour” which led to the provider agency pulling out of the contract with no notice.

I read a call earlier for no criticism to be attached to any of the various agencies/bodies involved in Eden’s care in case that deters future prospective suppliers. I hope this post isn’t perceived as criticism, although I do believe that accountability is important if any lessons are to be learned from this sorry episode. I can’t imagine how Eden must be feeling right now after being wrenched away from his home just as he was building a new life for himself. It’s vital that each player in Eden’s life is transparent and frank about the mistakes that have been made and what is needed to effect a successful return for Eden to his home. It would be totally unfair if the burden is shifted into Eden’s shoulders and the all too common explanation of “complex needs” being used to avoid accountability.

I can’t help wondering if we’re encountering another strand of the “not quite human” shadow that plagues much of learning disability service delivery. I always feel that the psychological and emotional impact of being institutionalised is given very little weight and worse, is often dismissed as a consequence entirely. We readily accept the difficulties the problems servicemen and women experience after being demobbed. We can understand and are reasonably tolerant to people’s difficulties after being released from prison. We even devote airtime and newspaper inches to the plight of celebrities adjusting to “real life” after spending three weeks in the jungle. But learning disabled are meant to come out of an ATU without any scars from the experience. It took us four years after Steven came home to stop him asking permission to use the toilet, seeking authority to get a drink from the fridge and requesting others’ agreement to put a DVD on. These are all minor examples of institutionalism but they are illustrative that a different set of “rules” exist in your home than in a hospital and after a time away, they have to be relearned. You can imagine the tension that occurs when someone whose every move and action is controlled for several years is suddenly presented with an independent, person centred approach to living their life.

The other question I have is where is the crisis management? I’m not undermining my argument in the previous paragraph with that question. I would say the effects of being institutionalised are dead normal considering the life lived in an ATU. I’m framing it as a “crisis” because that’s how the professionals would frame it. Considering the pertinent articles in the Human Rights Act and the Mental Capacity Act insists on the “least restrictive option” for someone’s care, you’d have thought that the last resort would be readmission. Sometimes that simply means throwing in extra resources (people, money, time etc) until the crisis has passed. I want to give a massive acknowledgement of how brilliant Hillingdon have been at this, twice in the past four years. In 2014, the day after Julie died, the social worker phoned me to ask if I needed some extra support in the next few weeks. I didn’t have to ask: she knew there would be practical things to attend to at a time of great emotional upset. The same thing happened when Steven moved house in 2016. I invited the new social worker to see the state of the place and she asked what extra support I needed for the period up to the move. She knew I was needed at the new house and wouldn’t be able to fulfill my usual caring committments. I wouldn’t have classified either of these events as a “crisis” but they were both big life events that needed additional help to manage. Why couldn’t the same, kind offer have been afforded to Eden?

I suspect that there were no extra resources to throw in because there weren’t sufficient resources in the first place. How many times have we heard about a care package collapsing because of insufficient resources being made available? We did some ad-hoc research for 7 Days of Action and over half the people who contributed told how their son or daughter ended up in ATU because of flaws in the support provision or the support provider suddenly pulling out of the contract. I think provider agencies in their desperation to win a contract overreach themselves or make promises they can’t keep. Years ago, in the first year after Steven left school we had two horrid experiences of this. The first agency the LA commissioned turned out to be the same agency the council used to supply the staff at the ATU. We didn’t know that at the time obviously. It was only during the internal investigation into the assault on Steven by one of the staff that we discovered that the agency didn’t actually have a license to provide domiciliary care. They were dropped by the LA overnight and two months later we were allocated a new agency. Two weeks into the new arrangement we were told by the agency that Steven had been banned from the swimming baths. I phoned the manager of the pool who said that Steven hadn’t been banned but the staff at the pool were concerned because all the support workers turned out to be non swimmers and were leaving Steven on his own in the water. Once the truth was out, the agency pulled out of the contract, again with no notice. They knew about Steven’s swimming when they agreed the contract but didn’t think it was important enough to employ people who could swim.

Supporting someone with autism and/or a learning disability isn’t rocket science. It’s framed as “complex” for two reasons: it inflates the fees that agencies can charge and it avoids accountability by putting all the spotlight on the person being supported. People like Eden who have been discharged from long spells in an institution need their experience validated and respected. They don’t warrant blame for other people’s shortcomings. They need people who can give them the space and the humanity to work through their trauma whilst trying to construct a new life for themselves. Readmitting the person to the very place that caused the trauma is cruel beyond words. And so very, very unnecessary.

I hope Eden comes through this. I’ve never met him but I’ve heard from others what a fine, stoic chap he is. To be honest I have more faith in Eden’s resilience than I have in the State’s ability to get it right and do the right thing by him. They haven’t made a very good start. I want someone, anyone involved in Eden’s care to recognise that he is human and that his human rights are as valuable and important as anyone else’s.

Mr Neary’s One Page Profile

This morning I read a very sad tweet from Dr Shibley Rahman. His mother is a patient at the Royal Free hospital and Dr Shibley has been wondering why the staff keep trying to engage his mother in conversations that she has no interest in. All became clear when he noticed that they had pinned the wrong person’s one page profile to the foot of her bed.

I have a love/hate relationship with the one page profile. I can see its benefit but to reduce someone’s life to one page reduces me to tears. Especially because they are often compiled by complete strangers.

It set me off into another morbid fantasy. I couldn’t bear to write a one page profile for Steven – that would be far too sad. So, here is mine.

The year is 2039.  I am 80. I have been in a maximum security twilight home for the last five years:

One Page Profile: Mark Neary

Mr Neary likes conversations about his past. To assist him, and staff, the following information and pictures will be useful to engage him in his social interaction programme:

21149939_10154676641377274_8959540532804174531_nDuring his childhood, Mr Neary spent many happy hours at Southall open air swimming baths. It was bulldozed to the ground in 1982:

dartsThe best live concert Mr Neary ever saw was by Darts at the Hammersmith Odeon. He still knows all the words to Duke of Earl:

1929923_15317802273_2828_nFor many years Mr Neary was a regular gym goer. Obviously delusional & a sign if his current condition, he still harbours dreams of achieving the 100kg bench press:

caulicheese_lgMr Neary cannot abide cauliflower cheese. Under no circumstances must he be fed this.

20170720_105909Mr Neary had a son called Stefan. Since Mr Neary deteriorated 10 years ago, Stefan has been living in a service in Northampton. It has been decided that it is in both their best interests that contact has ceased.

Mr Neary will try to engage staff with conversations about The Jam, Leeds United Football Club, Pear drops, Fawlty T