Drug Dealers

Apologies for the rather emotive title but I’m really angry. Have a read of this latest report of the Learning Disability Census – http://www.learningdisabilitytoday.co.uk/two_thirds_of_people_with_learning_disabilities_in_institutions_regularly_given_antipsychotic_medication_report_finds.aspx

68% of people with learning disabilities in “hospital style institutions” (assessment and treatment units) are on anti psychotic medication. And of those 68%, over 90% of them are being coshed with them regularly. This is a scandal right? It must be? Let’s drug all our learning disabled people to the eyeballs, shut them up and take away their uniqueness.

I’m gonna quote Katrina Pearcey – this is the modern way. In Victorian times we locked people away all their lives. Now, the modern way is to douse them and send them to assessment and treatment units to be introduced to their drug habits.

Where is the safeguarding? Where are the people in power questioning the way they operate? Or perhaps they’re all in it together.

And just look at the fees these places charge – as much as nearly £4500K a week. I’m sure the coke dealer in my local would like a piece of that action.

It has to stop. Please it has to stop.

I was going to hold back from recounting the latest news with Steven’s meds reduction to the summer but reading this report has spurred me into action. We have been reducing his anti psychotic medication since the diagnosis about his liver problem in early February. Last week, the meds stopped completely. In just 10 weeks, Steven has lost 3 stone 4 pounds. Ever since a friend posted on Facebook last year about her son’s organs failing as he was carrying 10 stone of fluids around his vital organs, I have been terrified that the same thing was happening with Steven. The 3 stone he has lost in such a short time must have been fluid weight and there’s still a lot more to come. I’ve had years of psychiatrists, doctors, social workers, positive behaviour people refusing to acknowledge that the huge weight gain has anything to do with the medication and putting it all down to poor diet. And when I show them what Steven actually eats, I am then cast as lying and not taking food issues seriously.

The medication was killing him, as it probably is for some of those 68% of people mentioned in the report. But nobody is really interested because there are huge profits for the drug companies and the owners of the assessment and treatment units.

It’s the modern way of “making a killing” in more ways than one.


The Steven Neary Guide To Interviewing Health Trust CEOs

Another day. Another car crash Katrina Pearcey interview.

Yesterday, the award winning Southern Health CEO was interviewed by BBC Oxford following the latest CQC inspection failing another of the Trust’s facilities. Over the past few months, KP has set the bar very high (or very low) in absolute nonsense contempt speak but yesterday she delivered a double whammy – two statements of award winning claptrap.

“No, we have the right people doing the wrong jobs”.

Is that like having a fully qualified experienced team of chiropodists employed to service the engines of Concorde? Right people for feet – wrong people for aeroplanes. And then ……

“It’s not about neglect. It’s about operating in the modern way”.

It’s such a definitive statement. It’s not “a” modern way – it’s “the” modern way. What is the modern way? The modern way for what? Have all their failings been down to operating in an old fashioned way? What is the relationship between neglect and the modern way? Do the two halves of that statement go together. She might have well have said, “I think Arsenal will win the cup because Christopher Biggins likes Maltesers”.

Not a single word of this makes sense. But I don’t think it’s meant to. That’s not the point of her words – to have a meaning. We should know the form by now. In every political interview, the politician will deliver a long statement along KP’s lines. The more confident interviewer might ask: “So what exactly do you mean?” To which the politician will reply – ” Let me make myself absolutely clear”, and then, word for word, say exactly the same thing all over again. It’s checkmate. Interviewer closed off.

We need to get off the idea that when the likes of KP give an interview, they are actually there to say something. That’s old fashioned – not the modern way. KP’s words are not about communication. It’s about making an appearance, to give the appearance of concern, of action, of a dialogue. The words, whether we understand them or not, are an irrelevance. The trouble is, even if we can accept that the modern way is about appearance rather than content, we are still left with the rage that we have just been treated with utter contempt. To deal with our rage, we need to fire a shot across KP’s bow. Here’s my tip:

Steven has developed something brilliant in the last year or so. In the past, if he didn’t understand what was being said to him it would trigger off echolalia and if the person persisted, it could lead to a rather messy meltdown. Phrases like: “I don’t understand what you’re saying”, or “what do you mean”? don’t come naturally to him. Occassionally he might say, “X is doing silly talking” but that’s as far as it went. More recently though, he’s adopted the dialogue from Fawlty Towers and that wonderful scene between Basil and Bernard Cribbens where Cribbens wants to “reserve thee BBC2 channel for the duration of this televisual feast”.

So now if Steven is not understanding what the other person is saying to him, he will interrupt with – “Why Don’t You Talk Properly”. To the point. Accurate if a trifle brusque. It won’t change the KPs of this world and it certainly won’t change their dreadful language. But it might just bring a moment’s satisfaction in an exposing the king has got no clothes on kind of way.

In the most modern way, of course

Direct Payment Power Games

In the #107days blog today, I wrote about Hillingdon stopping Steven’s direct payments after he had been in the Unit for 3 months, saying it was their policy that the person no longer had the “use” of the person who had previously been supporting them now they were in a residential placement. Even if that were true, that is pretty foul. It totally demeans the person’s relationships and fucks the member of staff over big time. Actually, in our case, it wasn’t true. I found a paragraph in their policy that stated that direct payments could continue if it was in the person’s best interests. Needless to say, Hillingdon stopped the direct payment with immediate effect and it took two months for them to be reinstated.

A good friend of the Get Steven Home group has had her direct payments stopped as the carer did the washing up instead of supporting the client. Also, the support worker put the client to bed which on the care plan is the parent’s job. Breach of contract. End of direct payments.

Someone I know gets 4 hours direct payments a week for her seven year old son. A support worker takes the lad swimming and out for his tea in this time, giving my friend the only time she gets each week for herself. In February the boy went down with measles. His direct payments were stopped because “he was unable to use them for the purpose they were allocated”. My friend gave up trying to decode this statement and asked the social worker directly what this meant and was told that the lad’s care plan stated the direct payments were “awarded” to support him whilst swimming and as he couldn’t swim whilst infected, they had to stop. Two months later, the measles have gone and my friend fears, so have the direct payments. She’s waiting for the case to go back before panel to get them back.

One other story. A couple of years ago, someone contacted me after reading my book and asked for my help in finding a solicitor. She received 40 hours of direct payments per week for her adult autistic son. This arrangement had lasted four years. Earlier that year, her father had come from Ireland to live with her. The LA found out about this and wrote to her asking for the return of all the direct payments from the date he moved in until the present date – about £3000. They claimed the care plan was now nul and void because his presence in the home acted as a “deflator” (have I got that word right?). They threatened her with court action if she didn’t repay.

After my hassle over how I manage the personal budget, it wouldn’t surprise me in the least, if when the next payment is due on 4th May, the LA decide to withhold it because I’ve not played by their rules.

These stories interest me because they are dirty tactics. The service user or their carer is suddenly painted as a villain, with horrid suggestions that they are defrauding the public purse. What is really happening is it’s just another disguised cut – an efficiency saving. Even if it’s only temporary some bean counter must decide it is worth it. And sod the disruption for the person who loses their means of support overnight, possibly never to be replaced again.

If anyone else has stories about the way direct payment/personal budgets get cut or removed for the most ludicrous reasons, please post them in the comments box or email them to me directly.

A Carer’s Bank Holiday

I try to keep off Twitter and Facebook at Bank holiday weekends. Hanging around social media on a bank holiday activates slightly resentful feelings that I’m not proud of. I get a little sad of stories of trips to the coast, barbecues with old friends, long lay ins.

I know how unsettled Steven can become by all the changes that a bank holiday brings. So, I work overtime to limit the anxiety but overload myself in the process.

Today is a good example. On Mondays Steven comes to work with me at the Arts Centre. I go out at 8am to pick up the half time refreshments – a bottle of orange juice and a bake well tart. This is because, if the weather is nice, Steven likes to go into the garden at the Center and recreate the scene where Mr Bean is attacked by a wasp as he eats his cherry bake well. Once he’s settled at the Center, I nip down to the cash point as it’s the only time I get during the week to draw out the money from the personal budget for the cab fares. And then back to South lands for lunch. Today, the sandwich shop was closed, so we came back early and I gave up the 30 minutes I normally have free at this time to cook a bacon sandwich.

Sandwich eaten, we then had a gap where Phillip and Holly would normally be, so I suggested we start the Monday Mr Bean session early. A DVD of 5 back to back episodes and my input required to respond to Steven’s narrative of the episodes. That took us up to Countdown and again, I was needed to confirm that Rachael had just revealed five consonents and four vowels. Whilst Rachael was doing her stuff, I went round the living room with the duster and did a pile of ironing.

One last job – cook tea whilst Steven watched an Abba documentary. I can multitask and can sing Super Trooper whilst grilling a steak. I don’t mind doing any of these things and indeed, get a great deal of pleasure from the way Steven engages with these things. It just helps if I don’t know that my friend is on a pub crawl, watching the football.

The support worker arrived at 5pm to do the bath and for the first time since 5am,I got 15 minutes to myself.

The weekend is nearly over so it’s probably safe to turn the computer on. And roll on the May bank holiday in a couple of weeks.

The Drugs Don’t Work

It’s a big week. The final week of Steven’s medication reduction. Next Wednesday he’ll be off the anti-psychotics completely.

He was first given them towards the end of 2007. He was on 2mg a day at the time. When he went into the Unit, they doubled the dose to 4mg within the first two weeks of him being there. He’s been on the same dose ever since. Since 2007, his weight has doubled and as I wrote about recently, it has started to seriously affect his health.

Thank goodness the psychiatrist has taken the issue seriously and has been fully on board in reducing them. We’ve been reducing them by .5mg a day since the visit to the clinic and getting the diagnosis. Today, Steven didn’t have any meds this morning and will have .5mg tonight. One more week and they’ll be out of his life.

Already, we are noticing a big change. It’s difficult for me to see because I’m with him every day, but people keep telling me that the weight is falling off him. When he came into my bedroom this morning to talk about Mr Bean, it was striking how much his puffy face has gone down. I ordered Steven some new summer pyjamas last night but they may be too loose in a few weeks time.

And he’s so full of beans. Steven is like Tigger at the best of times. At the moment, he’s like Tigger on steroids and whizz. Everything seems maximised. His usual excitement about life is on full volume. There’s been a couple of meltdowns and they have the volume turned up as well. It’s like a switch has been flicked and the whole Steven is returning.

Steven is downstairs at the moment having his usual Wednesday disco session with Alan. A couple of months ago, Steven would manfully try to dance but have to sit down after two songs. They’ve been going full pelt for over half an hour now. I’ve put on some of the fastest songs – Sylvester doing “You Make Me feel Mighty Real” and The Cartoons doing “Doodah” but he’s up for it.

On another day, I’ll reflect on what the hell the last five years have been all about. A developmental crisis about leaving school has led to over six years of sedation, a year in an assessment and treatment unit and huge weight gain. The overkill could have killed him.

Carespeak & Care Plans

Sorry – I’m back on Carespeak again.

Yesterday, I posted a section from Steven’s final care plan. Although there is nothing particularly wrong with it, reading it back makes me cry. I find it so sad that a vibrant young man’s life can be distilled into 12 sheets of paper, with no room for any aspiration or uniqueness at all.

Here is the final paragraph again – “Outcomes”

1. To maintain physical health and well being and appropriate levels of hygiene.

2. Continued 2-1 support with day to day activities and accessing the community (via direct payments on the prepaid card). To be able to access resources in the community safely and to maintain personal safety and wellbeing. To have meaningful participation in activities that aid development and reflect Steven’s personal choice.

“Outcomes” is a funny word. I’m pretty sure that Steven doesn’t think of his life and what he does in terms of outcomes. It’s not a concept that I apply to my life either. Does anybody get up in the morning and think about their outcomes for the day?

There are a couple of points about the language of the whole 12 pages that really strike me. Firstly, there is a total assumption that the reader will understand all the jargon contained within it. There is no attempt to pass the report through the Plain English machine before posting. Back foot time. You have to keep asking what certain words mean and that creates a weird tension. Secondly, the plan reveals a whole set of attitudes that the professionals have about the learning disabled and it’s not very encouraging. It’s like the person becomes a non human exhibit – a project to be experimented on.

So what of some of the key words of the above paragraph? I wish they would drop this “accessing the community” stuff. Steven is the community. “Accessing” it means that he is on the outside of it, waiting to be given admittance. That reveals a strong attitude – “this is ours and you are not part of it unless we allow you to be”. And he can access “resources”. Does he? I think he goes to the gym and goes swimming and has a marvellous music session at the Arts Centre. Does calling these things “resources” make them sound more important? Does it make it sound like the LA have some sort of stake in them – like they’ve provided these resources? Everything Steven does has nothing to do with “service provision”.

What is with the stress on “hygiene”? It seems such an odd thing to have as number one “outcome”. Has Steven ever presented as being unhygienic? Yes, he might struggle is he was left completely to his own devices but why does it merit such emphasis as to appear as number one?

“Safety” and “safely” in the same sentence shows that Hillingdon haven’t let go of that picture they built of Steven back in 2010. Whilst you can’t argue with a desire to keep a vulnerable person safe, I don’t think that was why it warranted two mentions here. It was a harkback to their reports of 2010 for court and their “belief” that Steven could be dangerous. It doesn’t matter at all that there has been no incidents of aggressive behaviour since Steven left the Unit. Unfair and unworthy.

Finally, there is the usual stress that anything Steven does must be “meaningful”. Steven’s life does give him meaning but I don’t think it’s the same sort of meaning that the social care world has in mind. We’ve been to the Mencap Pool today. That means a lot to Steven – the place is full of love. And love makes it safe. But I don’t think the lA had love in mind when they’re talking about things being meaningful. Of course, in that word, we also see revealed that someone is judging what is meaningful and what’s not. Applying a set of values that may have nothing to do with Steven’s values.

“Meaningful” is linked in with “development”. That cranks up the pressure slightly. Not only must what he does be meaningful but it must also develop him as well. Steven reminded me last night whilst watching Toy Story that Woody taught him how to change batteries. That wouldn’t go on a care plan. It’s all about measurement. Everything Steven does has to be measurable in terms of his development. What a way to live a life.

And there we have it. That is Steven’s care plan. Nothing about love. Nothing about fun. Nothing about aspiration. Nothing about relatedness. Nothing about being human. I guess the RAS couldn’t handle ideas like these.

Bun Fight at the Personal Budget Corral

I’m two weeks into the Personal Budget universe now. Admittedly, I’d spent hours (days?) in the weeks beforehand calculating all the figures. But I have to say, it has not been arduous at all.

Last week, it took me 40 minutes to pay five lots of wages, transfer money to pay the cab fares and allocate the funds for the monthly tax bill. It probably took me that time because (a) I have never done online banking before, and (b) I was having to set all the support workers’ bank details up for the first time. Today it took ten minutes!

And I want it to stay this way. The beauty for me is that I can do the wages in the small chunks of free time I get. Today, Steven and his support worker were watching the horse racing (Steven likes counting how many jockeys have red hats on), so I thought, as I had half an hour before starting tea, I’d get cracking on the wages. So, the support workers will get paid a day early – who gives a monkeys. It was convenient for me.

So, why am I standing by for a bollocking? Well – I was notified the other day that at the end of May I have to attend the 6 week review of the personal budget. Attending will be the social worker, the support planner, and my favourite person, the direct payments manager. I’ve asked if Uncle Tom Cobbley can come as well. They will draw up an agenda.

I can guess what will be on it.

1) Why am I disobeying orders and transferring the money from the prepaid card into the direct payment bank account and paying the workers and the cab firm from there? I’ve only done one transfer so far at a cost of 50p. But the main reason again is convenience for me. I may have weeks where, at my only free time, I don’t have internet access and have to do the wages by telephone transfer. Also, it takes up to four days for the money to get from the card into a bank account. There may be some weeks where I am pushed for time and I don’t want to pay the support workers late because of that. It takes two hours to get the money from my account into the support workers’ accounts as opposed to four days via the card. It’s a no brainer to me.

2) Why am I refusing to submit the support workers’ personal bank account statements along with all the other paperwork Hillingdon expect from me? Well, for starters, it’s none of their damn business. I checked with the information commission who agreed that it was “excessive”. When I set up the bank transfers, the records show the worker’s initials, their NI number and the pay period. Their full names, dates of birth and addresses will be on their contracts, which the council also insist is their right to “examine”. What more do they want?

I’ve reread the personal budget several times (and got a few other people to read it too) and there is no mention that the only way to pay people is directly from the card. There is also no mention that the workers personal bank statements must be submitted for scrutiny. But when Hillingdon say something is their “prefered” way, woe betide you, if you have another preference. I learned that lesson back in 2010.

Let’s wait for May. I’ll stick to my guns which may set about a collision course. I’m not sure whether the entire FACS assessment is reviewed at this stage as well. The support plan lists the two most important outcomes to be achieved by the personal budget as:

1. To maintain physical health and well being and appropriate levels of hygiene.

2. Continued 2-1 support with day to day activities and accessing the community (via direct payments on the prepaid card). To be able to access resources in the community safely and to maintain personal safety and wellbeing. To have meaningful participation in activities that aid development and reflect Steven’s personal choice.

Not a lot to it, is there? Certainly no scope for snow boarding in the Alps.