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Dignity, My Arse

Yesterday at @LBInquest we heard the lead psychiatrist talk about the fine balancing act between respecting dignity and safe bath care. If it hadn’t been for all the preceding testimony, it may have sounded genuine. But of course, it wasn’t.

The trouble with a broken social care is that it repeatedly takes important words and ideas and sucks them of any life and meaning. Fundamental values like dignity become corrupted, so their only value to the corrupted professional is to mislead or cover their own arse. Or both. Whether you see it as doublespeak or nothing speak, it kills the very idea of being human.

I don’t think the psychiatrist really gave a toss about her patient’s dignity. I’m not sure it even registered. You have to have very skewed logic to believe that it is undignified to leave someone with epilepsy alone in the bath, whilst at the same time promoting the idea of pinning someone to the floor by four people on their first night in the ATU. You either treat someone with dignity or you don’t. It’s not a selective activity.

Like many things in social care, dignity gets trotted out when the intention is to obscure. Yesterday it was announced that a new “Unit” is being built in Wiltshire for people with learning disabilities. It talked about patients and beds whilst presenting itself as a home that will give people their respect and dignity. Let’s cut to the chase. Despite Valuing People and Post Winterbourne View, it’s a new fucking ATU. They might call it “The Daisy” and bang on about dignity but it’s still another long stay unit. Even if the owners get their dignity gig spot on, it is still pretty undignified being sent to a place like that when you could be living in your own home.

Southern Health in their undignified witness evidence are mistreating humanity. They are perpetuating the worst indignity – that people with a learning disability are not quite human. Read the tweets of the psychiatrist’s evidence and try to find any trace of her according Connor the dignity of being spoken of as a person. It’s not there. Dignity dilemmas are a get out clause for their deathly care.

I despair every time I hear professionals talk about dignity. Even the well intentioned make my bum cheeks clench. I hear people talk excitedly about the possibilities of the One Page Profile. I would consider it pretty undignified if my life was reduced to one page. I bet the writer of the 1PP would too.

I have a fairly sound picture of the construct of my dignity. And Steven’s too. It is nothing like the social care world picture.

It’s dignity Jim. But not as we know it.

Parent Blaming

I wasn’t going to write about LB’s Inquest until it finishes. But yesterday’s recording triggered off such painful memories from my time in court, I wanted to set some thoughts down here.

The Ministry of Justice continually states that an Inquest is a non adversarial process. They usually trot out this line to justify not awarding legal aid to the families of the bereaved. So if an Inquest is non adversarial, what place is there for parent blaming?

Yesterday, one of the witnesses was asked if she was “scared” of Dr Sara Ryan. The witness said “no” but the reply was almost irrelevant. The aim was to paint a negative picture of Connor’s mother. There are 8 legal counsel present and only 1 representing the family. That’s seven opportunities to attack the family. The attacks had started the day before. Connor was “difficult” to build a relationship with. Patient difficult, Mother scary.

At our hearing, the Hillingdon barrister seemed obsessed with intimidation. One of his first questions to me was, “Are you intimidated by Steven?” My spontaneous, incredulous reply of “Intimidated!?” (Imagine Lady Bracknell saying “A Handbag”) should have put an end to it but he persisted for a horrible 15 minutes. Then, with all the other witnesses, especially Steven’s two support workers, he switched his questioning to, ” are you intimidated by Mr Neary?” Although everyone said “no”, he had set something up.

As a line of attack, it is psychology unsound. She is feeling intimidated. Ergo, you are intimidating. It’s nonsense. The reason you may be feeling intimidated may actually lie in you. Sorry to namedrop but last year I was introduced to Sir James Munby. I felt buttock clenchingly intimidated. Sir James couldn’t have been nicer. My intimidation had nothing to do with him. It was all my stuff around class, education, power etc.

In the bearpit of Oxford Coroner’s Court, it’s too much to expect people to ” own your shit”. That’s not the point of parent blaming. And patient blaming.

In the non adversarial process, even though a young man died whilst in State care, it is seen as acceptable for the State to attack the dead man’s family. It is just collateral damage as the NHS Trust attempts to protect its reputation. And it’s future earning power.

Mr Gove?

From A Fan

Needless to say, I’m a huge fan of Justice Peter Jackson.

Yesterday, a new Jackson P judgement was published (see the link below). The judgement deserves to be read from beginning to end. Like all of Justice Jackson’s judgements they are brilliant page turners. If he wasn’t a High Court judge, he should be writing formidable, edge of the seats, dramas.

The case is about Mr B, a 73 year old man and the best interest decision at stake was whether to amputate Mr B’s foot or to allow him his wish to die without the operation. Both the NHS Trust and the Official Solicitor were of the opinion that the operation should be carried out, despite Mr B’s objections. Mr B was deemed to lack mental capacity to make the decision for himself, hence the intervention of Justice Jackson.

Justice Jackson actually went and spent an afternoon with Mr B in the hospital and clearly enabled Mr B to open up in a way that he hadn’t been able to do with the other professionals. To visit P may seem an obvious thing to do but is very rare. I think it demonstrates a respect for the person at the heart of a case, that Justice Jackson took the time to meet Mr B.

Having weighed up all the factors, Justice Jackson decided to rule against the position of the NHS and the OS and held that Mr B’s “wishes and feelings” carry the weight they deserve. This is incredible on two counts. Not only is it very rare for a High Court judge to go against the view of both the professional witnesses and the Official Solicitor but even more importantly, it is rare for wishes and feelings to appear so substantially in a High Court judgement. Usually, and it was certainly the LA’s position with Steven, once the thorny issue of mental capacity has been got out of the way, it becomes very easy to just pay lip service to the person’s wished and feelings.

In Mr B’s case, the NHS Trust argued that Mr B’s deeply and long held beliefs were “religious delusions”. High fives for the way in which Justice Jackson responded to that: “His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his “fierce independence”, and it is this that is now, as he sees it, under attack”.  I find that incredible, that a person lacking capacity is given such respect as a human being. Once again, it is very rare. I had to put the judgement down at that point as I found it too unbearably moving to continue.

I could gush on but I’ll finish with the last two paragraphs of the judgement and ask the question: why isn’t this the norm? Why cannot this empathic and wise humanity not be a given in all services for people lacking capacity:

  1. “Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.
  2. I am quite sure that it would not be in Mr B’s best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.”

Calm Songs – Not For Silly Heads

I’m not sure if it was a throwaway remark or a gauntlet being thrown but on Twitter the other day, somebody suggested that Steven compile the playlist for Sara and Rich to help them with the inquest which starts next week.

Steven knows what happened to LB and I told him that we needed to chose some songs for LB’s Mum and Dad who had a horrible job to do next week. I suggested that he chose songs that “keep us calm and make us smile”. Double checking, that he’s got the criteria, Steven asked, “Not songs for silly heads?” (Silly heads are what we have on during a meltdown or times of big anxiety).

Well. Steven’s turned this into a major project. The following morning, he woke me up at 5.30 to announce – “Dad – we’ll have Hello Dolly on LB’s music. Louis Armstrong singing”.

So, without further ado, here are Steven’s top 10 songs to keep us calm whilst we’re doing a horrible job.

  1. We’ll start with a bit of Agnetha. She doesn’t give Steven a silly head but she does make him go a bit soppy.

2. Up next, The Pet Shop Boys. I asked Steven why this was a calm song and he replied it was because Chris Lowe has got a nice jacket on.

3. Now, some Style Council. Because they’re singing on a bus.

4. As teased earlier, here’s a bit of Louis.

5. There has to be a Mr Bean connection. Here’s a track from Mr Bean’s Holiday.

6. Steven chose a bit of Beautiful South. Because ” Paul Heaton is massive calm on the elephant”.

7. Steven does like a man in a frock.  It was either this or Dame Edna doing Waltzing Matilda.

8. I knew he would chose this one. Don’t forget you have to change the words to “Al in his army tank” and “Betty Hislop”.

9. Some Coral. Because we sang this on the balcony of the Uxbridge house the day the Olympic torch came by.

10. I love it that Steven loves this track. His support worker taught him what the African lyrics mean. It’s a staple of the Wednesday morning disco.

11. One for the road. Steven’s not that impressed but he knows it makes his Dad smile.

We’ll be thinking of you next week Sara and Rich. Lots of love from Steven & Mark.

DoLs Mixtures

Yesterday, I was invited to speak at the Court of Protection annual conference. I planned to just deliver the Get Steven Home story, with an emphasis on the three court hearings. The theme of the conference was “Reform”. There were some wonderful speakers. Some brilliant minds with formidable hearts.

So why did I feel so flat?

The first reason was obvious to me. One of the speakers was from the Office of the Public Guardian and I found myself feeling irritated as she spoke about the role of the OPG. I know I’m very sensitive to these issues but it sounded to me like a fair bit of ” othering” going on. The overall message that I heard was that families were the bad guys when it comes to financial abuse of incapacitated people. Professionals act with integrity – families are the villains. On the spur of the moment, I decided to change my speech and finished by talking about our ongoing relationship with the Court. I mentioned that I’ve recently done some calculations. I am meant to manage Steven’s finances and every penny I spend has to be in his best interests. That’s fine, even though I find it stressful not knowing how buying Steven a new CD will be interpreted. But here’s the rub. Even if I never spend another penny of Steven’s money, by a combination of the OPG fees and care charges, in seven years all of his money will be gone. Add into that the fact that LAs are charging people £85 a day to attend a day centre and private companies are charging £3500 per week for being in an ATU, I think financial abuse is just as likely from the State as from the family.

That only explains half of my flatness. The other half is trickier. It’s that awful sinking feeling I get when I experience how huge the industry is that’s built up around DoLs. I listen to some fabulous discussions about DoLs but I can’t place Steven’s life anywhere in the narrative. DoLs have become about lots of things but have become less about P. So, I get confused because I hear some wonderfully committed people debating the DoLs scheme but it feels alien to the life we inhabit. Legal professionals, social care peeps, academics, even philosophers wrestle with the Safeguards and for their good intentions, the industry expands.

Here is the thought that kept me awake most of last night. Would it be such a bad idea if the whole DoLs scheme was scrapped and we forget the idea of introducing a replacement scheme? Despite concordats, task forces, vanguards and Bubb breakfasts, the number of people coming out of ATUs has hardly moved an inch. Have DoLs helped the 3000+ people languishing in ATUs? Whether we apply an acid test or the Clapham omnibus test, people still get admitted to ATUs as frequently as the pre Cheshire West days.

One thing I’m prepared to bet is that, regardless of whether the 3000+ people are under a DoL, it is more than likely their Article 8 (and Article 5) Human Rights are being breached. But the HRA seldom comes into the equation. I don’t understand that. We have an existing law that could sufficiently serve detained people but we’d rather give endless energy deliberating what exactly is a deprivation of liberty.

If I could wave a magic wand, #LBBill would become law tomorrow. That would promote the person’s autonomy and make unlawful incarcerations so much more difficult. And for the people who slip through the #LBBill net, or for those people already detained, throw away your DoL schedules and view their detention through an Article 8 lens. I’m pretty sure that if we shifted the framing, people would receive justice quicker and more fairly.

Until of course, the Article 8 industry builds up.

Blips & Bollocks

Personal budget Tax bill for August paid on 18th September?


Support workers’ wages for last week paid on 21st September?


Personal Budget paid into account on 21st September?

Was it heckaslike.

Four months since transferring from having the personal budget paid onto a prepaid card and having it paid into a designated bank account instead, how is the old personalisation machine running? Well, after the first month when the payment was over a week late, the last two months has been plain sailing. A dastardly lulling into a false sense of security manoeuvre.

I phoned the Direct Payments manager both yesterday and today and was eventually informed that the matter is now sorted and it will be three working days before the money, that was due on Monday, will be paid into the account. Tough shit that the account is now overdrawn (She didn’t say that actually but that was the tone). Why, in the days, of internet banking, do we still have to encounter this ridiculous three working days rubbish? If you’ve made a mistake, and it’s people’s wages at stake, you pull out all the stops to remedy your error.

Two tips for Direct Payment managers:

  1. After listening to your customer explain what has happened, don’t respond with, “It is probably just a blip”.
  2. It is not particularly helpful to tell your customer, “We in the Direct Payments team have processed the payment. The delay is with the Finance Department”. The customer doesn’t care where the delay is. He is more concerned in how he is going to tell five support workers that their pay could be late. You might as well say, “We have processed the payment but Noddy Holder hasn’t had his sideburns trimmed this week”. It is as meaningful as the tripe you offer as an explanation.

So, this is where we are personalisation wise. You either accept a commissioned service, which doesn’t cover the client’s assessed needs because the LA aren’t prepared to pay the rates the provider charges. Or, you accept a personal budget. Become a manager. Become an employer and have to deal with the taxman. And then you are still reliant on an antiquated system clunking into life and doing what it is meant to do. In the meantime, you have to visit your GP and discuss a medication regime to manage the stress of every month bringing a will they, won’t they anxiety.

Sometimes you just want to say rude words.

“Ma’s out. Pa’s out. Let’s talk rude. Pee. Po. Knickers. Bum. Drawers”.

Lessons Learned

Here’s a conversation (announcement) from Steven from earlier this afternoon:

“Don’t drop your bag on the muddy grass.

You’ll make your bag all dirty.

Have to put your bag in the washing machine

Are you going to be a ninckenpoop all your life?

You can drop your bag on the carpet in the hall but you can’t drop your bag on the muddy grass”.

An invaluable life lesson learned.

I’ve no idea when Steven learned this lesson. Or who taught him the lesson. He could have remembered this conversation from any time over the past twenty five years.

But I think the field of potential teachers can be reduced because of the use of the word “ninckenpoop”. Who uses a word like that these days, whether as a joke or in seriousness? It can’t be any of the current support workers. They are all African and I don’t think ninckenpoop is in their vocabulary. I don’t think it was me. I love it when Steven comes out with phrases like “Gordon Bennett” and “Steven Neary’s been a soppy old sausage”, I don’t think I would have encouraged ninckenpoop.

My guess is that it was a classroom assistant. I don’t have anyone in particular in mind but Steven absorbs everything. His hard drive is packed with things people have said to him at various points in his history. Back then, he would have heard the words and stored them. Later, he would have tried to make sense of them. And now, he is announcing the lessons he’s learned from these chance encounters and taking it upon himself to teach others (me, the support workers, Uncle Wayne) these important lessons.

One thing I do know is that I trust Steven when he states he ahs learned a lesson much much much more than I do then when I hear a Public body trot out a “lessons learned, processes reviewed, blah, blah, blah” statement.


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