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The Psychiatrist Says “No”

I’ve been getting my brain in a right old tangle the last few days. I keep trying to compare the importance of best interests decisions in lawfully applying the Mental Capacity Act with what seems to be the complete absence of best interest factors when someone is detained under the Mental Health Act.

My web is further tangled by the disparity in the number of decision makers. Under the MCA, a best interests decision can only be made after consultation with all relevant parties. I know that isn’t always what happens in reality but at least that’s the goal of the Act. Under the MHA, if best interests are considered at all, the decision seems to come down to one person – the responsible psychiatrist. The person detained or their family are seldom included in the decision making process, so actually have little idea how the decision has been reached.

It’s only Tuesday but in the past four days I have heard the stories of three people with autism and/or learning disabilities who are each detained under a Mental Health section. Each one of them have asked for extended leave and can make a decent best interests argument for being allowed leave but each one has been refused by the responsible psychiatrists who have cited “risk” as the reason for their refusal.

The three requests were made to:

1. Spend a long weekend away with family in a cottage in Wales.

2. Attend a family wedding.

3. Spend his 30th birthday on a boat with his family and friends.

It’s pretty easy to put a case together as to why any of the above would be in the person’s best interests. All of them involve quality time with people who love them and have known them for years. All three activities are significant life events and will form part of the memory photo album for the future. All three events show the person they are loved, and respected, and important to the family dynamic and that the person is a valued component of something greater and bigger than him/herself. In a nutshell, all three should be good things to do.

But risk comes first and appears to trump best interests. There will be about 60 relatives and friends at the wedding, so surely amongst them, any risk can be mitigated.

One question I keep asking myself is this: There you are at a multi disciplinary meeting with all the professionals. They are keeping the conversation solely to the Mental Health Act. Are you allowed to talk about best interests as per the Mental Capacity Act? (You could also ask, are you allowed to talk about the Human Rights Act? Or the CRPD?)

None of the three people I’ve mentioned above were unwell at the point of their admission. They ended up in hospital because of failings in their home care provision. But because they’ve ended up in hospital, under a medical decision maker, everything is seen through a medical lens.

One last question – if the MCA is meant to such an empowering force for the good, how comes it doesn’t come within miles of the three guys in the stories above?

Deprived of Liberty In A Yellow Mini

Another day and another dreadful example of Steven being deprived of his liberty.

Today’s DoL took place at the Motor Museum:

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Sleepy & Wakey

Yesterday, the BBC reported on the plight of care providers who, following a tribunal ruling, are being told by HMRC that they have to pay the hourly national minimum wage for support workers who carry out a sleep-in night shift. The report also states that HMRC are demanding that this arrangement goes back six years so therefore agencies will have six years of back pay dues to its workers.

http://www.bbc.co.uk/news/amp/40648952

Mencap lost an appeal against this ruling and are planning a further appeal later this year. Here is their statement on the matter:

https://www.mencap.org.uk/what-were-doing-about-sleep-ins?q=sleep-ins

As usual, the cry from the care providers is that this will be the tipping point that pushes them into insolvency. Possibly. What tipped a long time ago is the ethical and moral positions of the key players. None of them come out of this very well.

Mencap’s statement is appalling. It cast’s its own workers as the money grabbing villians. It tries to scare the shit out of its own service users. And it paints itself as the victim of the piece.

That doesn’t wash at all. They have been aware of this ruling (as have other providers) for ages. They have chosen not to act on it but to use their funds to fight it. At the same time, they have chosen to pay their staff £29.05 for working a night shift. A night shift is usually defined as 9 hours, so at £29.05 for 9 hours work, that is way way below the minimum wage.

The one piece of information that Mencap is holding back is how much they are paid by the commissioning body for providing a night service. Whatever that figure is, you can bet it is more than £29.05. But revealing what they get paid doesn’t fit in with the victim narrative. Unfortunately, their appeal for support on the Mencap Facebook page has backfired, with many posters critical of their pay rates:

https://m.facebook.com/story.php?story_fbid=10155492043801354&id=124329456353&comment_id=10155493930826354&notif_t=like&notif_id=1500498296349613&ref=m_notif

What this sorry story shows once again is how hopelessly compromised Mencap are. How can they be “the voice of learning disability” and a major care provider at the same time? Their statement (above) demonstrates that their customers and their staff are pretty low in the pecking order in their priorities.

At the same time, the commissioners have got shit on their shoes too. They have continued to pay set rates for night shifts, buried their heads in the sand and tried to shift liability onto the care providers or the direct payment recipients.

In Hillingdon, they only changed their rates from 1st April 2017. They now pay an hourly direct payment rate of £10.73, regardless of whether the person is working a day or a night shift. However, they haven’t actually paid the new rates yet. We’re four months into the current financial year and they are still paying the old rates. I keep chasing it up and am told they are waiting for “brokerage approval”.

Back in 2012, I was effectively bullied into accepting a Personal Budget. The LA told me they were unwilling to continue paying the agency rates and I’d have to take over the running of the budget at the lower direct payment rates. It was only then that I discovered what the agency had been charging. For a night shift, they were charging the council £125 but only paying the workers £35. They were making a £90 profit for every night. I did a deal with the workers paying them directly at £65 a night. They were happy because they were getting paid £30 more and the LA were happy because they were saving £60. That arrangement has continued, although the rate has increased to £70, which thankfully is more than the minimum wage.

I don’t think there should be a differential between a sleeping night and a waking night. The person is still at work. If they do get some sleep, they are still sleeping at their workplace.

In our house, Steven takes himself off to bed when News At Ten starts. The support worker may sit up watching the telly or he may lay down on the sofa bed. Invariably, Steven will be up and down for the next four hours. The support worker may just be needed to answer the occasional question about Duran Duran or he may be required to clean up a mess in the toilet. The bottom line is he will really only get some sleep when Steven goes to sleep.

This issue has brought about the usual cry that social care is being starved of funds. That is true. But what is also true is that LAS, Mencap and other care providers have choices how they spend their money.

And often it is pursuit of a political ideology or more basic self interest greed that accounts for a large part of these sparse funds.

22 Years

Funny that 22 is Steven’s favourite number. There are 22 boxes in Deal or No Deal. Manuel took 22 rolls of toilet paper up to Mrs Richards’ room in Fawlty Towers.

Yesterday, we had an amazing coincidence that spans 22 years of Steven’s life.

A few months back I was approached by the quarterly journal PMLD Link. They had read my blog post about the review of the Deprivation of Liberty Safeguards and wanted to reproduce it in their summer edition of the journal.

Last week, I got an email from the editor asking for my address so they could send me a copy of the published article.

It arrived yesterday. Turning to the inside page, it had a list of the key personnel in the production of the journal. The first name rang a bell and the town where he lives rang an even louder bell.

It was the headteacher of the first school Steven went to prior to his adoption. Steven only went there for the first year and then he moved South to live with us.

I emailed the chap and I was right, it was Steven’s old headmaster. He hadn’t made the link when he published my piece, obviously because Steven had a different surname back when he knew him. He told me that Steven’s class teacher from 22 years ago is still at the school but Steven’s favourite music teacher retired a few years back.

It reminded me of a very moving moment we had during the week of introductions in Steven’s home town. We had been to the school the day before and met all the staff and Steven’s friends. The next day we took Steven to a Burger King for lunch. Sitting at one of the tables was the music teacher and several of Steven’s classmates. Steven dashed over to their table and proceeded to hit each one on the head as he excitedly pointed out: “Steven’s new Daddy”. The music teacher was in tears as he had never heard Steven string three words together before.

22 years. How time flies.

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A New Conversation

I’ve been thinking for ages of writing a pamphlet of “Tips”. One of the sections would be tips on how to get social care professionals to talk about the things they don’t want to talk about.

Take “challenging behaviour”. We’ve got to stop using that phrase. We’ve got to name it for what it is – signs of distress. The tricky bit is, if your son or daughter is in an ATU and having their detention lengthened because they’re a nice little earner for the provider, they won’t want to talk about signs of distress because it will mean acknowledging they are causing the distress. But even if you can’t get them to talk about what you want to talk about, you still don’t have to talk about what they want to talk about.

How to shut them up? Last night Steven didn’t fancy going to sleep. He sang his way through the night until 3am. Everytime the support worker went into his room to encourage him to go to sleep, Steven would say:

“Don’t talk about sleep Alan” and started singing Johnny Cash to the tune of Vindaloo. This would set him off giggling hysterically at his own joke. But it did the trick. It stopped Alan talking about sleep.

So, try it. Everytime a professional trys to increase their profit margins by dismissing signs of distress and turning it into challenging behaviour, stop them short by singing Johnny Cash to the tune of Vindaloo.

The other phrase that we must never ever be drawn into is “complex needs”. It’s a shifter of responsibility, a justification for anything, a checkmate conversation killer, all rolled into one. Died a preventable death? Ah yes, but she had complex needs. Entering his 16th year in an ATU? Ah yes, but he has complex needs. LA won’t fund a home care package? Ah yes, we cannot find a provider that can manage his complex needs. It’s the get out clause of all get out clauses. It’s the king of multi disciplinary one-upmanship.

My tip for changing the discourse of “complex needs” requires a bit of preparation. You need to go to your local supermarket before the multi disciplinary team meeting and purchase the largest trifle they sell.

The meeting begins. You want to talk about how the over medication of your son in the ATU is causing his organs to fail. You know it is killing him. You want to discuss the reasons for his clear distress. As sure as eggs are eggs, one of the professionals will say, “I hear what you’re saying but we’re dealing with extremely complex needs here”.

Tip number two. Take the trifle out of your bag and remove the film lid. In slow motion, allow your head to fall smack bang into the middle of the trifle. You then have a small window of opportunity, during the ensuing shocked silence, to change the course of the narrative and speak the truth. Seize the day!

There is another alternative. You could just say, “I refuse to use the language of challenging behaviour and complex needs” and just sit in silence. Trouble is that will either piss them off or be interpreted as acquiescence. Risky.

Take my advice. Try my tips. What have you got to lose, except your dignity as your wipe custard off your eyebrows.

The Hard Drive

The only downside of Steven coming off the medication has been that it takes him so much longer to find the words he wants to say. I understand the mechanics. The anti psychotics slowed everything down, making retrieval from his mental hard drive relatively straight forward. Now that he is no longer chemically coshed, everything has sped up and moving at a speed that Steven is unused to.

This morning he called me into the kitchen to have a chat. It took fifteen minutes of thumbing through the files on his hard drive to locate what he wanted to talk about. In that fifteen minutes, he was muttering as he browsed his “language files” and I was fascinated in how things were ordered.

This is how it went:

“Mr Rumpling on his boat in Chigley.

Anastasia with her glasses on.

No, you can’t speak to Uncle Wayne on the phone. Uncle Wayne’s gone fishing.

Anthony Mortimer kicked the candle in the church in Gold.

Ken Barlow’s dog called Eccles.

Jet doesn’t go to Gladiators anymore. Jet’s got a bad neck.

Can’t eat 10 chocolate biscuits. That’s too greedy.

Dr Mo has got bleed on her hands in Holby City.

Alvin Stardust.

Martin Clunes on his motorbike with Churchill.

Gareth Gates looks like Logan in the gym.

Get some Fruit Pastilles in Jay’s shop on Friday.

Harold Melvin’s got very big hair.

DAD! SYBIL FAWLTY IS DRIVING OVER TO BABBACOMBE. LIKE CHRIS”.

That was it. One of the support workers is on holiday this week in Babbacombe. Steven was excited about this and wanted to share the connection he’d made.

But what a journey through the hard drive to reach that point.

Three New Monstrosities

I can’t promise that this post will be free of swear words.

THE FUCKERS.

Let’s just remind ourselves of a couple of current government initiatives. NHS England have made a commitment to cut the number of in patient beds for people with learning disabilities/autism. The CQC have made a commitment not to register any more of these large institutions.

What a load of fucking shysters.

Because their friends, their partners, in the rapidly growing private in patient industry are definitely not “on message”.

Yesterday, Cygnet announced they will be opening a new 14 bed unit in Harrow (just down the road from me), this coming November:

https://www.cygnethealth.co.uk/news/new-autism-spectrum-disorder-service-opening-soon/?utm_source=twitter&utm_medium=social&utm_campaign=news

Only last week, the same company Cygnet were “delighted” that by working with their NHS “partners” they could announce the building of a 65 bed unit in Maidstone:

https://www.cygnethealth.co.uk/news/development-cygnet-hospital-maidstone-underway/

And completing a notorious hat trick of announcements in one week, ASC Healthcare announced a “coming soon” event on their website – the opening of a new 54 bed low secure unit in Wrexham:

http://www.aschealthcare.co.uk/news-story/wrexham-low-secure-hospital/

Last week’s excellent Lancaster University report for 7 Days of Action talked about the “Kevin Costner” principle – If you build it, they will come…

Cygnet and ASC are not building these units to stand empty. In the next few months, 133 ripe commodities will be exported from their homes and imported into one of these shiny new carbuncles. With their “day spaces” and “horticultural spaces”. Probably for many many years.

The LAs and the CCGs must be rubbing their hands with glee. They won’t have to pay a penny for the “care” of the 133 stock. NHS England will be footing that bill. And as we’ve seen with many NHS services, Simon Stevens is happy to sanction this as it satisfies the government’s agenda.

Scrolling through the Cygnet website last night, I saw a ghost. Back in 2010, Hillingdon put Steven out to tender. To my knowledge, they got at least six private providers happy to import Steven to one of their hospitals. In my desperate attempt to stop the trade of Steven, I developed a patter on the phone to these providers – “Oh by the way, you may have seen Steven on the BBC News. Would you be prepared to be interviewed by Private Eye about your plans?” It worked with four of them, including the Cygnet hospital, and they withdrew their tenders.

The ghost? Steven’s old treating NHS psychiatrist is one of the consultant psychiatrists at Cygnet’s Harrow Unit. Just imagine! In 2010, the responsible clinician was prepared to export Steven from his service to the company where he has a financial stake.

The FUCKING BASTARD.

This is happening all over. Last week, I heard the story of an independent psychiatrist called in to give a second opinion on the discharge plan of a guy with autism from an NHS ATU. A week later, the guy is admitted to the private facility where the independent psychiatrist is employed as the consultant psychiatrist. A trade, yielding the private company £7000 per week.

That’s why these three new Units are being built.

There’s gold in them Harrow on the Hills.