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The Summer House Scandal

September 2, 2015

For two days running, the BBC has run pieces about significant issues for people with disabilities. Yesterday, it published a horrid, sneering article about the “waste” of personal health budgets. It picked up on some “research” by Pulse, who by all accounts have always been very anti personal health budgets and applied absolutely no critical analysis to the figures it was reporting. The overall message of the article was that there are loads of people taking advantage of the personal health budget scheme and taking money away from more important health interventions. It didn’t exactly use the word but we were clearly back in “scrounger” territory.

One example they used and called it a “treat” was of a “summer house”. The article presented like some beneficent official from the CCG just handed over fistfuls of readies and the patient flew off immediately to Homebase for the latest garden accessory. Now, I’m willing to wager next month’s personal budget that the summer house was probably some sort of sensory facility. Let’s also assume that the recipient of the budget may have been someone with autism for whom sensory issues can be a major problem. Before the cash was paid out, a Panel of professionals, including health professionals, social workers, occupational therapists would have convened and made a decision on a particular piece of expenditure. Nothing random but all very tightly micro managed. By the way, I checked out the Homebase website and you can buy a summer house from anything from £160 to £500. That could be considered a reasonable bit of business if it keeps the person out of an ATU at £3500 per week. A sensible, long term plan and use of the public purse. I know that is guesswork but I think even my guesswork is more balanced than the BBC reporting.

Today’s article was about the huge number of people with learning disabilities prescribed powerful anti psychotic medication. From a study by the BMJ, the report threw up some alarming figures. It found that of 9135 people with learning disabilities who were on anti psychotics, 71% of those have never been diagnosed with a mental health problem. These drugs are being used as a cosh. Not just for behavioural problems but also to cover up insufficient staff numbers in care homes – sedate the resident because there aren’t enough staff to deal with them. The report also flagged up the awful side effects of this type of medication – weight gain being the most common. And we’re not talking about a few inconvenient pounds here. We’re looking at the sort of weight gain that causes life threatening conditions. I’ve written before that my biggest mistake ever was to agree with the doctor who prescribed Steven Rhisperidone seven years ago. In that time, his weight has doubled and it will kill him. Trying to wean him off the drugs has been an horrendous experience for him but so necessary for his current and future health.

Forgive me for this cackhanded attempt to link the two articles together but I find it interesting that the medical profession doesn’t bat an eyelid at the expenditure on these totally unnecessary drugs. I’ve no idea how much a year’s prescription of rhisperidone is but I bet it’s an obscene lot more than a summer house. We’re back to the medical model for people with learning disabilities again. It’s fine for people to be drugged into nothingness. It’s fine for people to be “treated” in expensive assessment and treatment units. But see the person as a human being and try and come up with human responses to their troubles and you’re sneered at and judged.

One thing that both BBC articles does is to present the people at the heart of their stories as an alien species. The “normal” BBC viewer or reader couldn’t possibly understand what these beings are like. They aren’t like us. They’re not human as we know it. And that gives them carte blanche for the type of othering they’ve indulged in for the past two days. Migrants. People on welfare. Now we can add people with summer house treats to that list.

The Government must be absolutely delighted.


From → Social Care

  1. Sally permalink

    The reporting of all this has been terrible and far below what I would usually expect from the BBC. There was no recognition of the bias of the group collecting the data and no attempt to flesh out what was presented. What, as you say is defined as a summerhouse? What was the condition of the person using it? Is it a clinically recognised condition ?How was the spend justified to panel? Does it seem to be a good use of public funds ? Out of how many cases have these supposed abuses of the system been found?
    There may be Boroughs which toss out money to anybody with a desire ,no matter how whimsical. I have never come across these. My experience has been the reverse. Indeed things which could make an enormous difference to a disabled person’s wellbeing and arguably make them less likely to need expensive intervention later on are seldom granted.
    I remember when PIPs etc were coming in we were all given examples of happy disabled people hang gliding and so on. It’s really suggests that the people are so well resourced that there is money for such extras. In fact we were all yelling that the basics are not there. Not the day centre not the accommodation not the activities not the clinical resources. Is this more of the same? If the disabled are all sitting in summer houses they must be very very well resourced and any claims to the contrary are invalidated.
    With drugs- surely the main problem is that there is really nothing but drugs offered to help carers and parents cope with challengeing behaviour. It is really pretty much all that is on offer if you call and ask for help. There are not the clinical resources to offer anything else, such as skilled clinical assistance with behaviour at home.
    I recently took leave of my senses and called our LA’s ,single point of access’ to ask for help with some terribly difficult behaviour. I was told to email- verbal referrals not allowed. OK. Did they see it was a crisis? Yes,but this is how we do it.
    A month later, a call. The worker had discussed it with a clinical (the dizzying speed!) the clinician had suggested a parenting group happening in a couple of months. Or I could go to the GP and ask for more drugs for the young person concerned. That really was it.
    Summer house my foot.

  2. Lisa permalink

    You are so correct Mark and Sally. More drugs and respite are all that is offered. No therapy. Nothing.
    Just to add, as children, usually a dodgy special school with unreliable transport and phantom speech therapy. It is no wonder at all that our loved ones anxieties will overcome them. Its all there.

  3. The radio 5 article this morning on anti-psychotic drugs was very fair … a straightforward interview with a couple whose 41 year old son has a brain injury (and I think at the last minute they mentioned Aspergers, too) … the interview with Nicky Campbell allowed the couple to speak clearly about how the system had abused their son … it was very moving, and very revealing.

    I know that any report will be incomplete, and may be biased … but let’s also be careful to give credit where credit is due so that we don’t fall into the same error.

    My daughter’s needs are so minor by comparison, but I am afraid for her for her future. Thanks for all you are doing.

  4. nic permalink

    early morning classic fm they were reporting ” country bolt hole ” didn’t hear that slight exaggeration repeated again thankfully. Feel quite anxious for holiday making friend who will be sporting trappings of disability . Fear of her being challenged about who paid for the chalet and if she is lucky the car as well. Thinking seriously about passing on the request of another person with qualifying disabilities and chronic health conditions ( happily as reported ” they are the only ones that get personal continuing care budgets “. She would like a nice retro umbrella to go with the perching stool which someone can shuffle nearer to the window for her, she has time to kill, between 13 and 15 weeks potentially ,during which time she remains penniless and is going nowhere. A carer I saw yesterday was having a good scoff, home alone for the first time in weeks and enjoying every bite, that was a treat.Glad the BBC didn’t catch sight of her.

  5. Well said Mark

  6. Quite. I was also disappointed in the Guardian’s coverage of the so-called story. In addition to Mark’s points, none of those commenting seemed to understand that NHS Continuing Healthcare is explicitly to cover health AND social care needs.

  7. It’s so disappointing to see such poor reporting that doesn’t even attempt to look at the complexities of “care” and “treatment” – we saw some similar stupidities about children and intermediate treatment (IT) in the 70s where children stuck in deprived and in some cases dangerous environments had conditions of supervision orders to attend IT which introduced some to new experiences such as outward bound “holidays”; and children in care taken on holidays abroad…all such a ‘scandalous’ waste of public money – implications being children should be punished for landing in such difficult home and local environment situations which didn’t help growth and the development of positive ways forward… Summer Houses seem to be getting a more prejudicial reporting than Moat Houses…… whilst we saw some “shock” at what was being claimed and what seemed to ne to be fraudulent claims, few were prosecuted/punished and we saw many excuses written about why this had happened including that poor MPs’ pay had so badly lagged… the pay and expenses allowances being completely outside most if our experience, let alone the fact that all the rest of the country had also experienced lagging pay /(well maybe apart from those poor bankers). Social care at least has been frozen for years. All this seemed to be ignored, as has been for far too long the continuing poor (if not abusive) treatment of people with complex needs and the impact on them of the cuts, as disabled people without voices are the easiest targets.

  8. Nichola permalink

    Talk about a non story. The journalistic credentials of Pulse have nosedived. Badly researched, packed with misinformation and totally lacking in coherant analysis. I was furious when I heard this on yesterday’s Today programme. Personal budgets make up 0.1% of total NHS expenditure. Of that 0.1%, a “tiny, tiny fraction” is spent on things such as a Sky box or whatever else makes a small difference to a person’s quality of life. The editor of Pulse should be thoroughly ashamed of diseminating this inflamatory and judgmental tripe.

  9. Pauline Thomas permalink

    I strongly believe that when people with learning disabilities’ social networks were broken up by the closure of their day centres, especially good ones which offered many different activities, they began to get depressed.

    The FOI to our NHS Trust showed that referrals of adults with LD to their psychology dept. had risen sharply after the closure of the day services.

    Now what happens when people cannot articulate their fears and feelings properly? Well the only way open to them is to be angry and disruptive or to sink into deep depression. I wonder if the policy makers realised that their decisions were causing people with LD distress If they did they chose not to act on it. They carried on regardless, closing this, paring down that and ignoring the growing number of people who were suffering. To put it bluntly they did not give a shit. Their blinkers were firmly fixed. Like so many people in power they believe that people with LD are not quite human. The only answer to this problem is to medicate. Shut them up. If god forbid someone dies they can always trot out the bit about taking the welfare of people with LD seriously. They can sympathise with the family and say that lessons have been learned. They can do all that and get away with it. That’s if we let them.

  10. yes. and despite all the anger brimming up over ATUs over DWP over incompetent self directed support teams etc etc this one article is the one that has finally made me snap. i am outraged and frightened for my daughter because a PHB was precisely what i am in the process of asking for because all the usual routes (expensive specialist school followed by mainstream college followed by anti psychotic pills followed by “have you considered independent living?” have failed so f ing miserably the only hope was a PHB.

  11. Spot on as always Mark. The BBC is merely a propaganda instrument of the state. Their coverage of the indy ref last year was scandalous and last night Corbyn was their victim. Rip up those licenses!

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