Human Rights & St Andrews

I heard a very distressing story yesterday. A young woman with learning disabilities is currently being held at St Andrews. As you know, St Andrews is in Northampton. The woman is from Wales. The family have been prevented from seeing her since November. She is allowed telephone contact but the staff have banned her from speaking in Welsh to her family.

I tweeted about this earlier and many people, rightly, saw it as a Human Rights issue. Others despairingly asked “How do they get away with it?”

I think the answer to that question lies in their award winning programme for improved behaviour. Last time I wrote about St Andrews a member of staff proudly sent me a copy of their programme to tell me I’d got the regime all wrong. I dug it out today and I’ve reproduced it below.

Each patient is allocated a Level between 1 and 6. Level 1 is the most serious with the most restrictions on the patient’s human rights. Level 6 is the level for patients to aspire to. Speaking to families with people detained at St Andrews, moving up the levels is as precarious as wandering around a land mine site.  You could have worked your way up to level 4 and then one false move and you’re back to Level 1 again. There’s no planning to it: it’s like a daily game of snakes and ladders with your liberty.

It makes total sense when you think about the years that patients are detained in St Andrews. They have to keep those £12k per week beds filled and this is the perfect model to achieve that. It’s a model that is completely random and dependent on the whims of the staff. If Steven was there he would find it utterly confusing and distressing and would seldom move out of Level 1 in his confusion and distress. I imagine it would be the same for many people with autism and/or learning disabilities.

Anyway, here are the Levels. I’ve only included 1 to 3 and Level 6 but you’ll get the picture.

I wonder what level the young woman from Wales is on?

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Dr Valerie Murphy – No Likey Likey

This week saw the conclusion into the Fitness to Practice Tribunal for Dr Valerie Murphy, the psychiatrist and lead clinician responsible for the “care” of Connor Sparrowhawk whilst he was in the STATT Unit. The determination was reached last November: this week’s hearing was to apply the sanction.

Following the live tweeting of the three days was too hideous for words. But the worst was kept until last. Dr Murphy escaped with a year’s suspension (She has given up her license in the UK and now works in Cork, so heaven only knows whether the sanction will have any effect). The Tribunal statement included a paragraph on “mitigating circumstances” and had the outrageous sentence “in the difficult world of adult learning difficulties”. To read such institutional disablism from a medical tribunal is truly shocking.

Much has been uncovered, written about and discussed since these proceedings began but this morning, Sara Ryan posted the following tweet:

Put aside the system failures. Put aside the need for lessons to be learned and a culture change. Put aside the litany of gross failings that the tribunal found in Dr Murphy’s practice.

Just supposing the core of this horror is that Dr Murphy had taken a dislike to Sara. Connor died because the responsible clinician didn’t like his mother.

For what it is worth, I think Sara is right. I think a handsome, talented, unique young man died because of the lead officers vanity and ego. Most of the evidence at the tribunal when stripped right back has rested on her narcissistic arrogance. Most of the behaviour of her counsel stemmed from her impossible ego.

There’s lots of other evidence to suggest that this happens. I would suggest you dip into some of the discussions about the case of Dr Bawa Garba on social media. I’m not going to get into the rights and wrongs of the case but the behaviour of some of the medical people towards the non medics has been appalling. Sneered at; mocked, attacked are just some of the things I have witnessed and been subjected to. I would suggest that these behaviours stem from a dislike of anyone from outside the profession who has the audacity to challenge the expert.

Much was made in Steven’s court case about the infamous email from the social worker to several of the MDT.

“There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven’s, however I want Steven to remain at [the support unit]. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven.”

What the court judgement didn’t make clear was what led to her email. In fact, it was a reply to one that I sent to the social worker and the Unit manager the day before. I reproduce it below and hope the content is self explanatory:

“Hi All. I’ve just come back from the gym with Steven and the support workers. I couldn’t help but notice that the issue about Steven’s ties, cords and laces going missing is still happening. His trainers had no laces in and whenever he kicked the ball, they flew off. Also, the elastic from his tracksuit bottoms had been removed and every time he did some short sprints, his tracksuit ended up around his ankles. I know that **(Another resident) has the tendency to go into the laundry room and remove these items and I’m not knocking him at all. For me, this is a matter of Steven’s dignity. And also it’s becoming quite expensive to keep replacing all these clothes that have become useless……”

It’s not aggressive is it? But it cut the social worker’s fragile ego. Her response was totally inappropriate to my enquiry and demonstrates the real loathing she felt towards me.

If it was just a battle between the parent and the medic, that would be one thing. But as numerous stories reveal, there is a consequence to the person being cared for. Revenge on the parent can be played out on the child. Steven’s fate was a year’s detention: Connor’s was unbearably worse. Dr Murphy was blinded by her feelings towards Sara and it led to total indifference towards her patient. (I’m sure the Freudians among you, may suggest something even worse).

One thing I never understand in the world of social care is where is the clinical supervision? In my professional counselling world, I have clinical supervision once a fortnight. It has many purposes but one of the most important ones is to look at where my stuff may be intruding into the therapeutic work. On a few occasions my supervisor has said to me “Mark – this is your shit”. It is deeply uncomfortable but invaluable and a real necessity.  It is about serving the client. From the evidence of Dr Murphy’s tribunal and the ragbag collection of character witnesses she produced it was clear that, even six years on, she receives none (or little) clinical supervision. I suspect that sometimes you reach such a height in your field that supervision is considered beneath you. Or you are left to organise your own supervision and that would have been very low down Dr Murphy’s list of priorities.

The conduct and professional behaviour of Dr Murphy will continue to attract much analysis and discussion.

I suggest that it would be foolish to overlook the obvious. Dr Murphy’s conduct and professional judgement was impaired because she hated Sara Ryan.

Connor died because of a fragile, out of control ego.

When the world of adult social care is populated by professionals like this, this is what  makes that world “difficult”. Not the Connors.

 

Two Years On: Another Fuck You to Personal Budget Experts

I’m ground down. Ground down by Groundhog Day.

Two years ago, I got caught up in a deeply threatening battle with HMRC over the support workers’ tax and national insurance. I became quite ill with the fear that their increasingly menacing letters triggered in me. Here’s my blogpost from May 2016 on the subject. (The update at the bottom of the post is hugely significant to the current story):

https://markneary1dotcom1.wordpress.com/2016/05/12/fuck-you-personal-budget-experts/

Two years on, exactly the same thing is happening again. On 3rd February, I received a letter from HMRC Debt Management informing me that I owed £600+ for the financial year 2016/17. I know I don’t. I wrote them an immediate reply. Adopting a belt and braces approach due to my fear someone might spring a “We never received your letter” tactic, I phoned them on 6th February. I spent 55 minutes on the phone to a Debt Management officer who said that she was unable to check the figures or tell me how they had been worked out but she could assure me that her figures were correct. Eventually, I persuaded her to transfer me to someone in the Employers Helpline team. This conversation took 45 minutes. He could have been the same bloke I talked to back in 2016. He was adamant that the quarterly return I submitted for the third quarter was a monthly figure so they were justified in estimating a figure for the next three months and it is this estimate that makes up the “outstanding debt”. I lost count of the number of times I said to him that I submitted quarterly returns because HMRC sent me quarterly returns. In the end, and my voice shaking with a mix of anger and tears, I pleaded with him to put me through to someone in the Carers Team. Not many of the staff in HMRC know that a dedicated Carers team exist. He didn’t. I couldn’t take any more that day. After all, it had been nearly two hours and I had got nowhere.

The next day, I tried again. Another 40 minutes. “Sorry, we can’t put you through directly to the Carers Team. I can take your details and someone will call you back within 72 hours”. That’s the service level agreement. You have to sit with the stress for a further 72 hours.

Luckily, someone did phone me back the following afternoon and the relief was instant. She’d checked all my returns for the past three years and everything was up to date. Nothing outstanding to pay. Oh, and by the way, did I know about the Employers Allowance that was introduced in April 2015. Looking at my records I had never claimed it and in fact, we owe you £5000. “It may take a bit of time but you should receive a cheque for £5000 by the Spring”.

Today, I got back to Steven’s and there is another Saturday letter waiting for me. From the HMRC Debt Management team. It starts “We’re disappointed that you’ve failed to respond to our previous requests…..”It ends, “If you don’t pay now, we can enforce debts by seizing your assets and selling them by public auction as the law allows. We can charge you fees for this….”

All those calls. The letter. The energy, time and cost has counted for nothing. Back to square one.

This week I saw another of those Twitter conversations about the beauty of personal budgets. I don’t join in with them anymore. I get wound up by the way the “experts” turn the sort of situations I’ve described in this post into an academic debate. Or I get told that there’s nothing wrong with the theory of Personal Budgets, it’s the execution that causes the problems. As if that matters a toss.

I’ve typed a reply to today’s letter. I’m gearing myself up to spending another two hours on the phone on Monday. And I’m completely on edge. I know it will get sorted (In 2016, they sent me a cheque for £50 to apologise for the inconvenience). Until Monday, this will bite away at my brain.

Because I know that whatever positive response I get next week, that won’e be the end of it. It is more than likely that these letters will turn up once a fortnight until the Spring.

Safeguarding Alert for Service User MN

This is a referral to the Newport Pagnellshire Safeguarding Adults team in respect of the service user, MN.

SU, MN was observed throughout the day on Monday February 12th 2018 as part of the Newport Pagnellshire highly innovative “Truman Show Surveillance Assessing For Independent Service Users” scheme.  A number of serious concerns came to light both in SU MN’s placement and whilst he was accessing the community during his community activity programme. We recommend an urgent multi disciplinary team review of SU MN’s behaviour involving as many multi disciplinary experts as you can muster in three month’s notice. Without preempting the outcome, it may be that SU MN would benefit from an intensive period of assessment in a centre that the Newport Pagnellshire commissioners have recently spent £7million on providing.

There now follows a comprehensive, unbiased account of SU MN’s day with particular attention drawn to significant risk behaviours and areas of dubious mental capacity.

Incident 1:

SU MN awoke at 7.35 and independently attended to his personal care. (See risk management schedule 9.16 for risk assessment of shaving head with wet razor). SU MN prepared his own breakfast which he ate whilst independently watching the luge event at the winter Olympics.

SU MN then accessed the community using community transport (See positive behaviour support manual chapter 3.3.88 – “Catching the 222 bus to Uxbridge”). SU MN was observed participating in a retail activity for purchasing tuna. He then entered a sportswear discount premises and purchased a training top. Upon return to his placement, SU MN discovered that whilst the aforementioned item of personal clothing was marked as XL on the hanger, it was in reality a medium size.

This incident raises a number of serious issues that need addressing. Firstly SU MN seemed unable to weigh up the differing information provided on the hanger and the garment’s inner label. He made an impulsive decision without furnishing himself with the full facts of the matter. Secondly, and without prejudice, we feel it was sheer folly for SU MN to even contemplate purchasing another training top in the first instance considering he has 7 compatible, perfectly serviceable training tops in the clothing container in his placement.

We later visited SU MN to put our concerns to him, namely his lack of capacity in not showing the foresight to check the sizing and in the unwise inappropriate behaviour of buying yet another training top. SU MN’s responses to both concerns were alarming. To the first serious issue, he could only reply “Because I am a dick” and to the second issue, “Because I’m a vain bastard”.

Describing oneself as “a dick” not only illustrates serious self esteem issues that need extensive psychological input but doesn’t cut the mustard as an answer in a formal mental capacity assessment. Neither does dismissing serious professional concern with “because I’m a vain bastard” show the necessary insight one would expect from someone judged as adequate for an independent placement in the community. I’m sure you’ll agree that there is no place for vanity in the world of social care (As written about by me in my award winning research chapter for the BASW journal – “There’s  No Place For Vanity in the World of Social Care”).

Incident 2:

After preparing his lunch of a tuna salad and a whey protein shake, SU MN attended the fitness hub for some pectoral building therapy. He engaged positively with Panther, who was at the front desk and changed into his training apparel with minimum supervision. SU MN showed limited communication skills with his fellow hub service users, relying on a nod or a grunt to communicate. However, he did announce to one of the other service users that he intended to “bang out a couple of personal bests today” (Note for MDT to consider – referral to speech therapy for more appropriate conversational engagement).

To his credit, SU MN did enlist the support of one of his circle of support, SU BP (Big Phil) to spot him whilst facilitating an incline bench press. But SU MN demonstrated a worrying inconsistency in his risk management knowledge when 20 minutes after this he attempted some 40kg cable flyes unsupported. During our assessment later with SU MN he dismissed our expert concerns with the remark “But I’m an old meathead from way back”. It is our opinion that mocking professional opinion rings serious safeguarding bells.

Furthermore it should be added, that although it is the safety of our service users that is first and foremost in all of our decision making processes, the MDT must be mindful that we don’t want some fat cat have-you-ever-been-injured-in-a-community-hub lawyer knocking on our door.

Conclusion:

We trust that the Safeguarding MDT will agree with our assessment that SU MN’s insight into his own behaviour is so at odds with the professionals’ insight into his behaviour that we can only draw one conclusion – SU MN lacks capacity on everything and it is in his best interests to safeguard him in the future to restricting his activities to accompanied, supported visits to Poppins cafeteria and meaningful activities like washing his clothes at the Launderama.

 

Do More. Be More. Love More.

I’ve been feeling pretty wasted the last few days. It’s been a horrible week on Planet Social Care. The disappointing outcome to the Richard Handley inquest where a team of barristers for the professional “interested parties” managed to convince the Coroner that a verdict of “neglect” cannot be handed down if several parties all had a contributory part to play in a cumulative neglect. That was followed by the dreadful scandal at the National Autistic Society run home, Mendip House. Quite appalling abuse of the people living took place but no criminal prosecutions will be taking place. And the NAS has shown utter contempt for those residents, their families and the charity’s many supporters by first trying to hush up the scandal over a number of years and then once the serious case review was published they created a separate Twitter account to respond to peoples’ concerns. In the midst of these two major media stories, there has also been the latest chapter in Steven’s Community DoLS adventure.

The first two stories trigger off a familiar response in me. Do you remember the chant that Charlie Dalton used to give in the cave in the film Dead Poets Society? “Got to do more. Got to be more”. I hear a similar voice in my head when one of these monstrous scandals breaks. I have to do something about it. NOW. I lay awake for hours on Friday night trying to think of something that I could do, even imagining forming a new charity that would operate with the integrity that so many of the big ones lack. Fortunately a good dream that night stopped that one in its tracks. In the dream, I was with a group of people surveying some land with the intention of building something new in the space. The land we were inspecting had previously been a grand estate but was now just a wasteland. In the centre of this estate was a large void. One of the group got into the void for further inspection and got trapped there amidst the blood, gore and wreckage of the hundreds of bodies that had been buried there at one time. We wisely decided that this was no place to make our home and moved off to find our own space. The big charities are not of this time. They have no relevance anymore. But they will continue to occupy a rotting space and it would be foolish to try and muscle in on that space. More wise words from George Julian on Twitter yesterday and I calmed down. I do enough. That’s good enough.

Whilst pondering the Community DoLS yesterday evening and the fact that the assessor has concluded that Steven lacks the capacity to consent to his support arrangements and is therefore deprived of his liberty, I came across a fantastic piece of writing from Rob Mitchell. It’s a five star composition (and gets an extra star because he name checks me and Steven):

https://lastquangoinhalifax.wordpress.com/2018/02/10/for-the-valentines-i-never-knew/

Where is love in the DoLS scheme? Okay, I’m a comedian. It’s nowhere and it ain’t going to find its way into a mental capacity assessment. I’ve written before but I feel that capacity assessments are loaded against learning disabled people. By their very nature, an assessment is totally head centred. Feelings and intuition don’t register. Love wouldn’t appear anywhere on the form.

Steven challenged this absence of love during the assessment on Tuesday. The assessor was trying to find out if Steven knew why the support workers go with him to the shop. The care plan reason is to support Steven with road safety; help him with the money; protect him from himself if a dog suddenly starts barking. Steven thought about the question for a while and answered “Cos Alan and Des are Steven Neary’s friends”. Now that’s not an example of Steven’s limited understanding or his lack of language. Yes, he wouldn’t consider the “official” reasons but that’s exactly how he sees it. They go with him to the shop because that’s what friends do.

I had further clarification of this yesterday afternoon. Steven and I were doing our Saturday taping session and were playing George Michael’s “Outside”. In two weeks time, we’re going to see a Wham! tribute band. I reminded Steven of this and he immediately checked out who was going with him. When I said me and Alan and Michael, the smile couldn’t have been bigger. He went bounding off into the hall singing “Club Tropicana, drinks are free”. I don’t want to over interpret his reaction but it reminded me of those times when I’ve been getting ready to meet up with friends and that moment when your heart sings a silly song in recognition of the friendship you’re about to experience.

That’s love.

And you don’t need to do more.

Full To Capacity

Today was the latest in the long line of mental capacity assessments that Steven has been put through in relation to the community DoLS. The first one was a year ago and today was the fourth. They’ve never really got out of the starting blocks because, quite frankly, Steven has refused to engage with them. You can always rely on Steven to smell the bullshit a mile off and in his own inimitable way, calls it for exactly what it is.

Anyone with a smidgen of knowledge about the Mental Capacity Act knows that a capacity assessment has to be decision specific. And that has been the stumbling block so far – the process is so nonsensically labirynth, nobody has managed to work out what the question is that they’re meant to be exploring. I’m still not entirely sure but I think the question today was – does Steven have the capacity to agree to his current support arrangements. This is important because the DoLS ship has sailed so far off course that having support around the home and to go out is now seen as a deprivation of one’s liberty. We are now in such DoLS chaos that the very thing that enables Steven’s liberty is viewed as depriving him of it!

I spent the morning with Steven but left before the assessment. Cowardly, I know but I was frightened of inadvertently revealing that the king has got no clothes on. So I left it to the two support workers knowing they’ll give me a full report afterwards.

The social worker brought a male colleague with her. It was a wise move. Steven gets a bit intimidated by her but he took to her chum.

Here are some of the highlights:

Assessor: Where do you live Steven?

Steven: In the Cowley house.

Assessor: Do you live here on your own?

Steven: No. With Mark Neary.

Assessor: Do you like living with Mark Neary?

Steven: Yes.

Assessor: Do you like your support workers?

Steven: Yes.

 

Assessor: Do you do your food shopping?

Steven: No.

Assessor: Who does your shopping Steven?

Steven: Ranjit or Gary.

Assessor: Are they your support workers?

Steven: No. Ranjit and Gary are Tesco men. Ranjit and Gary bring the shopping on their lorry.

Assessor: Do you go to the shops Steven?

Steven: Yes. Go to Jay’s shop.

Assessor: Do you go to the shop on your own?

Steven: No. Go to the shop on Friday with Alan and Des…. (Steven then ran through each day of the week and who goes with him each time).

Assessor: Why does Des go with you on Fridays?

Steven: Steven Neary carries the crisps. Des carries the massive heavy milk.

 

Assessor: Do you ever go out on your own?

Steven: No. I don’t. (Then he thought about it and admitted). Steven Neary went to see Uncle Wayne next Friday nighttime. Steven Neary was being a bit silly.

 

Then, for some reason, the assessor decided on some geography questions:

Assessor: Where is Cowley?

Steven: Here. This is the Cowley living room.

Assessor: Is Cowley near Uxbridge?

At this point the assessment abruptly ended. Steven got upset and ran off to his bedroom saying:

“Don’t want to go back to the Uxbridge house. Want to live in the Cowley house forever and ever”.

 

This morning, before the assessment, I tweeted some thoughts about and mentioned that I’d like to have a cup of tea with Lady Hale and ask her whether this is what she had in mind when she came up with the idea of the acid test. Steve Broach tweeted back suggesting that she would probably be up for it and that I should drop her a line at the Supreme Court.

So I did.

And I think she will reply.

“Lady Hale. Do you ever leave the Supreme Court on your own? And do you know where Westminster is?”

Two Way Family Favourites

An unexpected thing happened yesterday whilst I was delivering the Get Steven Home story at an MCA conference in Herefordshire. It tickled me at the time and you’re allowed a little chuckle if you like.

It was a really appreciative audience. Having told the story at these sort of events many times now, I know the parts of the story that are likely to get a reaction from the audience. They laugh when I tell the Robbie Williams story. There are gasps when I tell them about the action points at the end of the minutes of the multi disciplinary team meeting (Action point 3 – Mr Neary must not be told about our plans). Sometimes some people cry when I tell them I vomited on the floor after receiving the “We’re never going to allow Steven to come home” letter.

Anyway I told the story and at the end, as is customary, I took questions from the floor. One guy in the audience had heard me tell the story twice before. He put his hand up and said, “Mark – can I ask you to tell the ‘Logs’ story?”

I’m taking requests now!

I feel like I’m on a greatest hits tour and the Logs story is side one, track 5.

It reminded me of the story that Rick Astley told on Parkinson one Saturday night. He was doing a two hour concert (with interval). He had just completed the second song of his set when someone in the audience yelled out: “Oi Rick. When are you going to give us Never Gonna Give You Up”.

So for my encore tonight, if you’ve never heard the Logs story, here it is:

For about 18 months after Steven came home, the MDT were still involved and expected me to keep the same sort of intense, detailed logs that had been kept at the positive behaviour unit. On our dining room table we had four large lever arch folders. One had over 200 pages of risk assessments and risk management plans, all drawn up during Steven’s time away. The second was a food diary. It was incredibly repetitive. Steven has the same breakfast every Monday to Friday, so this folder held over 400 pages that all said, “Steven had apples, pears, bananas and grapes for breakfast today”. The third folder was the “daily reporting log” and consisted of all the things Steven had done during that day. One of my favourites was: “Steven and his father enjoyed positive interaction this afternoon over a social activity”. In translation this was Steven and I watching the Basil the Rat episode of Fawlty Towers and acting out the “Let’s have a little Basil hunt scene”. The fourth folder was the one the MDT were particularly interested in and was ominously titled the “Incident Log”. It was thinner than the rest but I was still expected to take this log to a monthly meeting for the psychologist and the PBS manager to pour over and suggest things that we could have done differently to prevent the “incident”.

After 18 months of this intense scrutiny I started to get pissed off with the logs cluttering up the living room and put three of them in one of the kitchen cupboards. The only one left on the table was the the risk management bible.

One day I came home from work at lunchtime. Steven and the support workers were out and whilst doing some tidying up I noticed that the folder wasn’t on the table. This was when we lived in the “Uxbridge house” and it was a first floor flat with a balcony. Steven and the workers eventually returned and when I asked them where the folder was they all looked  a bit sheepish. One of them admitted that Steven had a meltdown earlier. The balcony windows were open and Steven picked up the folder and flung it off the balcony. One of the workers went out to collect its contents as they blew along Uxbridge High Street.

I panicked. I had one of the MDT meetings two days later and they expected me to take the log along with me. What story could I make up to explain its absence? In the end I decided to tell the truth and use the “incident” as a springboard to a discussion about stopping the invasive logging. There were lots of grave murmurs and the psychologist eventually gave her summing up:

“It’s a shame that we didn’t have a risk assessment for the risk management folder”.

She wasn’t joking.

That was the time to stop logging our lives.