Rightful Lives: The Legal Challenge

One of the most heart warming aspects of working on the Rightful Lives exhibition has been the input of our legal friends. Keen to be involved, we’ve been blown away by how much of their time and expertise they’ve been willing to give.

A few weeks ago we organised a meeting between families and lawyers to collect information that may be pertinent to a legal challenge on the grounds of human rights abuses or equality act breaches of people detained in assessment and treatment units. On Tuesday a couple of members of the Rightful Lives team met with the lawyers for an update of their thoughts having reflected upon the earlier anecdotal evidence.

I hope people will understand that at the moment it feels prudent to keep the nature of any potential legal challenge under wraps so as not to alert any organisation/body/charity that we’re on their case. However, it is fair to say, that the possible legal actions on the table are akin to a Polaris being fired off. And any legal challenge will be a collective action so that no individual will be expected to put their arse on the line.

Here is another call to arms:

For the second 7 Days of Action campaign we asked a series of basic questions about ATU experiences and the published responses proved to have one of the most powerful impacts of that campaign. The original blog is here:


For the current legal challenge we are asking for something similar. The lawyers need as much basic evidence as possible when considering the nature of the claim.

We’d like to hear from people and families who currently have a family member detained in an ATU. We’d also like to hear from people and families where the person has been in an ATU but has since been discharged.

The information you give will not be published but will be passed onto the legal experts. It is okay if you wish to remain anonymous. If the person who is/has been detained, you should consider if they have the capacity to consent to this information being disclosed and if they lack capacity, if it’s in their best interests to supply the information.

These are the questions we would like to collect answers on:

1: Name

2: Who is the commissioning body responsible for the placement?

3: Who is the LA where the person normally lives?

4: Who is the provider of the ATU placement?

5: In a sentence, what was the reason for the admission?

6: How long has/was the person been in the ATU?

7: How far is the ATU from the person’s home?

8: In what ways do you consider the person’s human rights have been breached?

9: What are the reasons given as to why the person hasn’t been discharged?

10. If the person has been discharged, what signs are there of any ongoing trauma?

If you wish to contribute to this action, please email your evidence to: markneary@rightfullives.net .


24th September 2018.

Wow. As we say in Cowley, “By ‘eck. Thee don’t do things by ‘ arf”

I set my alarm for 6am but found myself awake by 5.30 anyway. It was Rightful Lives launch day. The exhibition encouraging visitors to reflect on the relationship between human rights and people with autism and/or learning disabilities. The exhibition has been five months in the making and the sheer creativity of the project and the contributions has been an absolute joy.

As I watched the reactions unfold, I realised I’d become almost blase. I’ve looked at every exhibit daily for several weeks and have moved from awe to comfy familiarity. Reading the feedback brought me back to the emotional impact every single one of the exhibits carries. For me, on many levels. Each exhibit is so deeply personal it moves me profoundly. I love the ordinariness as much as I love the extraordinary. To see an exhibit from a young guy with learning disabilities sitting alongside the contribution of a social worker is powerfully touching. The meeting of history with the now brings us together in a way that I’ve never experienced before. Bottom line: it’s been a stonking experience.

It’s been awesome working with Julie and Mark on the project. I’ve always been slightly envious of those close working relationships like Starsky & Hutch, Morse & Lewis, Cagney & Lacey. I feel I’ve now had that experience having worked with those two stars. We’ve laughed like drains regularly, we’ve cried and we’ve raged. Good buddies.

At 8am I had to drag myself away from the computer for my appointment with the urology consultant at the hospital. All the symptoms I presented to my GP nine weeks ago have disappeared and the CT scan found my liver clear and no sign of gall stones. However…

I’ve got a tumour in my bladder. It’s a “sizeable” tumour. They don’t know yet whether it’s malignant or benign. But fortunately the scan revealed that it hasn’t spread anywhere else. It’s location is contained and is in the dome of my bladder which the consultant described as the best place to have a tumour as it allows him easiest access come surgery.

This is the plan and I’m still bewildered by it. I go in to hospital on Friday and whilst under a general anaesthetic, the surgeon will stick a camera up my manhood to determine the state of the tumour; remove it; apply a single dose (?) of chemotherapy if the mass is malignant, and finally he’ll fit a 24 hour catheter. As long as there are no problems with the surgery and as long as I can pee properly once the catheter is removed, I’ll be discharged within 48 hours. A few days bed/sofa rest at home. And a check up after 3 months to make sure everything is okay. That’s it. Is it possible to deal with cancer quicker than it takes to shake off the common cold? I checked, double checked, triple checked that I’d heard correctly and I had. And when I got home I checked with Dr Google and what I read was a carbon copy of the consultant’s words. I guess I’ve been lucky. It’s pure coincidence that I had the CT scan for one set of symptoms that passed naturally but the scan revealed something for which I’ve had no symptoms at all.

I was back home by lunchtime and spent the rest of the day swinging between basking in the warmth of the exhibition response and blubbering on the phone as I told friends my news. I don’t feel upset any more. I don’t feel scared. I feel a sense of relief. I’ve imagined and rehearsed for the past 9 weeks being given the news that I’ve only got a short time to live so I feel I’ve got off lightly. Writing that feels bonkers – how can having a tumour mean getting off lightly! But that’s how I feel and my therapist’s specialist subject is denial so we’ll cross that bridge if we come to it.

I slid into bed just before midnight. In amongst all the love, humour, collectivity of the exhibition visitors, I saw a tweet from my anti fan. Needless to say I came in for a pasting. I cried. But it wasn’t because of her. She was just the straw that broke the stressed camel’s back. I was asleep within minutes.

And for the first time in about two years, and on the day I discovered I’ve got a bladder tumour, I didn’t need to get up during the night for a piss.

No Going Back

When I deliver the Get Steven Home story I’m often asked whether there has been any ongoing trauma as a result of Steven being kept away from home for a year. I tend to downplay my response as the positives of Steven’s life now far outweigh any negatives.

I’ve spent the morning with Steven and realised there is definitely a pre ATU and post ATU difference to how Steven verbalises his anxiety.

Prior to 2010 and as far back as I can remember, Steven had a catalogue of phrases that he would use in moments of anxiety or agitation. I really don’t like the term “meltdown” but the script would come out just prior to the meltdown reaching a crescendo. I learned early on that Steven expected you to repeat back to him what he had just said and then to offer some sort of reassurance that the worry he had wouldn’t actually happen. However, I also learned that whatever you said had little impact on whether the anxiety abated or escalated: that was entirely down to whether Steven could arrest the mounting agitation.

The script was incredibly familiar. “Want Robbie Williams go back to Take That”. “Want John Waterman (his favourite primary school teacher) go back to Grangewood”. “Want Richard Whiteley not be dead and go back to Countdown”. You can see the pattern here. It’s all about a loss or absence that Steven didn’t fully understand and the need for people to be in their expected, rightful place. The other thing was that none of these expressions were directly about Steven: they were about things he wanted to happen but weren’t about things directly happening to him.

For a few years after coming home, the anxiety expression couldn’t have been more direct or clear. We never heard of Messers Williams, Waterman or Whitely again but everything became “Don’t want to go back to M House. Steven Neary’s staying in the Uxbridge/Cowley house forever”. In some respects it was easier to offer reassurance on this matter, although we all know that ultimately we, as family, don’t really have the final say on where Steven lives. And Steven certainly doesn’t. So the script changed and became more Steven focused but the effect on Steven’s anxiety remained the same – only he could manage his own anxiety. It did feel that this anxiety that had existed since childhood had grown another layer that could be classified as trauma. Accidentally dropping a bowl of Frosties would get the immediate terrified reaction. “Not going back to M House?” Is that trauma?

In the last two years, the script has changed again and I think demonstrates how important Steven’s own home is to him. Enough time has now passed for the fear of a return to M House to have become less gripping. These days, the emphasis is different and Steven has a different script for different people. With Alan, he will say “Steven Neary’s not going to the police station?” With Michael, he looks for reassurance about the weekend, “Steven Neary’s doing a new tape on Saturday afternoon with Mark Neary?” With me, the focus is Thursday – “Steven Neary going to watch his dvd when he gets back from swimming on Thursday?” All of them are about seeking reassurance that life in the Cowley house will carry on just as Steven expects and wants. Today, I had to repeat the Thursday line 27 times before I left. Yesterday I only had to say it 3 times. I like Thursdays best – I don’t have to say it at all.

The first thing I noticed on my return to my flat was the DoLS form still sitting on the dining room table. (By the way, I spilled a bit of gravy on it last night. Will that prompt yet another form?) It got me pondering again how the mental capacity assessment discriminates against the very people it’s meant to be safeguarding. Steven is meant to give a cognitive explanation as to why he wants to live in his home. He is expected to demonstrate he can weigh up the pros and cons of his living situation. How he feels about it and what he intuits about it count for nothing at all. Anyone listening to him when he feels anxious can be left in no doubt how important his home is to him but that wouldn’t figure in the DoLS assessment at all. Those rules don’t apply to the rest of the world. I chose my flat because I loved the view of the canal bank from every window. I didn’t give an awful lot of time to weighing up the pros and cons of the survey results. I suspect if I was being assessed for a DoLS and I stated that I wanted to live in my flat because I love watching the barges and the ducks, my capacity might be questioned. For a learning disabled person, there is no doubt. No space for a feeling response but considerable weight given to being able to manage a tenancy.

Most people don’t really live with the fear of their home being taken from them. If you’re learning disabled it’s just another daily fear that you have to learn how to manage.

Endless Endlessness

I’m humming an old tune again today. I’m sorry.

The social worker phoned me yesterday to announce that he needs to send both the Community DoLS paperwork and the latest care plan back to me as he’s had to amend one section on each and needs mine and the support workers’ signatures again. Let’s remember that they started the Community DoLS process in May 2015 and it hasn’t got to within farting distance of the court yet. The latest care plan was reviewed in April this year and still hasn’t been signed off.

The care plan hold up is because I wrote something on the last copy I signed and sent back. I took offense to the sentence, “Steven is unable to make friendships” and wrote on the form, “This is incorrect. Steven has his own definition of friendship and has many friends”. I’m glad I corrected this framing of who he is but it means the whole 12 page form has to be redone and resubmitted.

The latest hold up to the DoLS is just plain bonkers. The social worker was checking the section on Steven’s contact numbers and came across a number he didn’t recognise. It turned out it was the landline of the home we left in 2009. But he can’t tippex it out. The whole 16 page application needs to be redone and come back for me and Des and Alan to sign. Three and a half years and four social workers after the DoLS assessment started.

Two things:

I’ve written many times over the past three years that I couldn’t give a monkeys about the Community DoLS. It is a pointless exercise that says nothing and has no bearing on our life at all. I’ve tried to engage with it as little as possible. I’ve changed my tune the past few weeks. Since my health issues, I’ve worked overtime to try and secure Steven’s future after my death as best as I can. The DoLS form states several times that it is in Steven’s best interests to be living in his own home with 24 hour support. It’s the least restrictive option for his care. I agree. But I want the court to rubber stamp that. I don’t trust Hillingdon to suddenly change their mind the day after I die. I want a belt and braces approach to Steven’s future.

The second thing is the glaring reminder of the nonsense of social care and how it ties ties itself up in ridiculous knots. I have two forms sitting in front of me. The care plan describes the 24 hour support as a positive thing. It enables Steven to live a good life. This is right. However, the DoLS form sees this in a very different light and sees the 24 support as depriving Steven of his liberty. How crazy is it that one document acknowledges it gives Steven his liberty and yet the other document written by the same person determines it deprived him of his liberty?

I think the whole system lacks capacity.

Human Consultations

Three things. Bear with me as I try to knit them together.

I got some sort of news from the hospital today. Needless to say, I had to phone them; they didn’t phone me. Today seemed a good day to chase them up as it was a fortnight ago today that the secretary promised to “escalate” my scan results. They outsource all their out patient scans to a private company so that generated another layer of bureaucratic non action. Anyway, the results are in. Liver is okay. No sign of gall stones. But “something is showing up” in my bladder. I had to go for more blood tests this afternoon. The consultants will have their meeting next Tuesday when my case will be discussed. I’ll then be notified of “the plan”. Probably, if I chase them up. My bladder may be showing up something but this whole process is showing up something too. I’m not a human being. I’m reference number P901263. It’s life and death to me. It’s a job to everyone else. The piece of paper I took to the blood department revealed nothing human about me beyond my name. The nurse commented on my “lovely veins”. That’s what I am. Can it realistically be anything else?

Today the government issued their response to the LEDER review into the premature deaths of people with autism and/or learning disabilities. Here is the link: (Don’t worry if you nod off halfway through).


It’s pretty underwhelming. More consultations. More dates, two years ahead, for the next stage of the process to happen. Talk of considering mandatory training for all staff in NHS. Mencap being given airtime to puff their plumage. They’ve been lauding the training proposal all over social media today presumably with one eye on a juicy contract to provide that training. The voice of the lucrative learning disability industry. I was invited on to a radio programme this afternoon to discuss the government’s announcement. I couldn’t do it. I couldn’t be involved in another discussion of “complex needs” or “this difficult client group”. I couldn’t say the same thing I’m always saying (Don’t worry. I see the irony of that sentence. I’m forever saying the same fucking thing in this blog). The review can’t achieve anything unless it finds a way to see the people it’s serving as human beings. And as important as death reviews are, they have to give regard to the peoples’ lives. Normal, messy, adventurous human lives.

But can it realistically be anything else than more consultations, more plans, more action groups, more pledges, more transformation?

I’m in demand at the moment. I’ve been asked to write a piece about the government’s proposed Liberty Protection Scheme. I haven’t said yes or no yet but I don’t think I’ve got anything new to say. DoLS have become a huge part of the Lucrative Learning Disabilities Industry and I don’t see the new LPS changing that. Reading the proposals, it’s hard to see that they’re about human beings. The bureaucracy is woven into the proposals and that well and truly trumps the human. I can’t debate the proposals on social media because for me it’s not an academic discourse. It’s not about a system, good or bad. It’s about Steven going swimming. I’m scared about “necessary and proportionate” replacing “best interests” because that further dehumanises an already non human group. The bottom line is that I cannot find a space within the debate to talk about human beings living normal lives.

But can it realistically be any different?

I’ve done it. I’ve been there too.  40 years ago I worked for the DHSS. When I worked on the reception desk, I saw the human. When I visited people in their own homes, I saw a human. But when I was sitting at my desk assessing a new claim, I mechanically processed the form that said: “SP. UE. 2Ds. CT. SICB. PA”. I didn’t even register her name. She was just claimant 19634.

It could be different.

It’s less than two weeks until the start of the online Rightful Lives exhibition. Despite the early criticism thrown at the exhibition, I’m amazed at how collaborative the project has turned out to be. Equal contributions from disabled and non disabled people, sitting next to each other in the conference display cases. No fanfares. No patronising differentiations. Just an exciting mish mash of people stepping up to the plate. I want to know what the visitors to the exhibition think and feel. I want to lock the doors until they’ve written their essays about how the exhibition will inform them. I know that’s ridiculously arrogant but I’m not bothered. I want to ask people, “When you look at the exhibits from Jack Moore, or Mikey Brown, what do you see?” Of course the exhibition won’t change the world. It’s just an unusual invitation to be a guest in the lives of some people who don’t normally get guests.  I’d just like it to prompt visitors to remember something about a human they’ve just seen.

Trouble is, you can’t go on a radio programme or write a journal piece where your take home message is “Just see the fucking human being”. It ain’t sexy enough. An anecdote about Steven’s relationship with Sybil Fawlty or a story about my hospital (non) adventure is good for a blog but it doesn’t cut the mustard in a wider audience. I don’t speak the Mencap language. And because of that, the door is wide open for more focus groups consulting to their hearts content, with a vague promise that something may bear fruit in 2021.