Bringing shame on Lancashire

I'm ashamed to draw your attention to this case of, at best poor practice and at worst, abuse, not a million miles from my own doorstep. A teenager with autism being locked into a padded room (presumably for his own safety) at school, on a regular basis, is not a good way to educate anyone. I understand he is now elsewhere and doing well. Why could this not have happened sooner - locking him up once in a crisis might have been unavoidable, but regularly is avoiding facing what was making him 'kick off'.

That there was a 'blue room' for this sort of reason is a little disturbing in itself. It suggests this was a planned and acceptable form of response. There are alternatives to this sort of behaviour - admittedly more labour intensive, and hence more expensive - as his current position suggests, that work.

Two aspects that I find more worrying are that the school in question was run by Scope - a charity committed to learning disabled people that I have considerable respect for, and that the remedy had to be sought via the courts - and CQC seems to have had little to say about this. I assume it didn't fit their tick boxes as it was an educational establishment. People are still people whatever care context they are in.

Those involved need to be held to account for this and I will do what I can locally to ensure this is treated as unacceptable by the responsible parties. It may have been Wigan paying for this and it may have been Scope running the school, but it happened in Lancashire and for that I'm ashamed.

When watchdogs get distemper

So MPs at last seem to be getting the message that CQC (Care Quality Commission), the care 'industry' watchdog, really isn't up to the job.

Readers of this blog will know I used to be a fan of it's predecessor CSCI which did much to keep the worst excesses of the 'care industry' under control, acted fairly firmly on incidents of abuse but was also flexible enough to see innovation as positively contributing to best practice.

CQC on the other hand, was set up with much reduced staff, much wider responsibilities and a new chair and chief executive bringing their own baggage of previous failure and censure to a critical and sensitive role. Presumably they couldn't get anyone better because the brief was to make a large silk purse out of a very small pigs ear. The result was an organization that relied on care service providers to increasingly police themselves. It instituted a tick box culture that relied on providers 'self assessments' to shop themselves if they weren't up to scratch (highly unlikely). It was so under and poorly staffed that it couldn't even dealt with whistleblowers concerns in anything like a timely manner. It desperately took on more and more responsibilities in a grandiose attempt to make size look like quality. It refused to consider any innovations that didn't fit the 'rule book' regardless of whether they improved care or not. And it took a Panorama investigation to blow the gaff on the blatant abuses going on that it had already been told about.

You'll have gathered our own experience has been somewhat jaundiced - caused by bitter experience that had a day to day detrimental effect on the quality of my own sons life, where insistence on the tick boxes prevented improvements in his care. (Details are in previous posts.)

So who is watching the watcher. I would have thought that by now the government would have got the message from many individual complaints as well as the high profile abuse failures, that CQC isn't up to the job. It sounds from this article that some MPs are at last getting the message. I certainly hope so - this government has just forced a bill through that will drastically disrupt the health services and a series of cuts that are decimating care services. If we ever needed a care and health watchdog, we need one now. What we actually have is a failed and discredited, floundering bureaucracy.

There seems little option now but for all of us involved in care to take responsibility ourselves. Whistleblowing and complaints - unfortunately 'after the event' solutions - are going to have to be the tools of choice. There isn't much else available. It's up to us now.

The 'Ashley' treatment

Some of you may have come across the 'Ashley treatment' discussions in the press. Ashley is a profoundly disabled child in the US who was given surgery and hormone treatment to keep her small as it was felt this would give her a better quality of life.

This has polarized opinion with disabled rights campaigners saying it is more for the carers benefit and starts the slippery slope to eugenics. On the parents side they insist it makes her more comfortable and retains enjoyment opportunities for her that increased size would take away. I raise this here as the 'treatment' is now being taken up by other families, albeit on a small scale.

My own position on this isn't simple. We've had a profoundly disabled child who grew up into an adult. I'm fairly sure we wouldn't have gone down this road even if it had been available or relevant. That isn't because I feel it's intrinsically wrong. I think this 'treatment' probably went too far but it really is complicated, and it worries me that many committed people seem willing to take up definitive positions so quickly on almost partisan grounds.

The surgery involved was major, involving breast removal and a hysterectomy, followed by hormone treatment. There are risks with the surgery itself (we did not do some operations on our son precicely because of the anaesthetic risk) - and there are ethical issues about some of the surgery (as our child was a boy rather than a girl, much of this would not have applied). I understand and have a lot of empathy for the 'drift towards eugenics' arguements (in my experience there is more of an acceptance that disabled people are less 'worthy' of expensive intervention than normal people, even among medics, and I will fight this forever). On the other hand(s) this is after all, just another medical procedure, and I don't feel it should be discounted on the grounds of being 'unnatural' - all medical treatment is 'unnatural'. I have to say that I find the sentimental arguments about keeping her childlike difficult to take and in particular find the 'pillow angel' comments a little sickening.

On the other hand(s) I have real sympathy with the parents reasoning. She would be spared considerable discomfort (lying down and period pain), would not risk pregnancy (presumably from abuse) but most importantly would be able to do things and be cared for better while small (this may be the fault of society making things inaccessible, but society does make things inaccessible and that's real even if it's wrong.)

I'm not going through all the arguments here as I believe it's too complicated to take an across the board stance - each person involved will be different. I raise it as an extreme case that is likely to get more visible in the future.

Our own son would not have been able to have decided any of this for himself and I would have fought tooth and nail for any treatment I believed would have made his quality of life better. He was his own person and had the right to grow up, but he also had the right to a comfortable existence. We agonized greatly over his fundal plication (which closed off his stomach to prevent reflux but also meant he couldn't enjoy food - he was then fed directly) and only agreed to it when the choking risks became life threatening. The decisions on these things need to be taken looking at the person holistically and putting yourself in their position if they can't decide themselves - taking overall, snap judgements on this isn't helpful.

I had hoped that this could only have happened in America, but I understand a few people in this country have also had the 'treatment' now. Read around this if interested and don't make up your own mind - you will be wrong in many cases if you do. What is right for the individual is what matters, not the party line.

Carers really don't get paid

There's now some real, hard evidence that Local Authorities don't spend the money they are given by central government for carers services, actually on real services. (Thank you to The Small Places for publishing this and to Mark Neary for doing the research.)

This will probably come as no surprise to carers, but the rest of the world probably thinks that at least the cash named for carers gets spent on carers - and I'm sure Local Authorities quote it as having been. This money isn't 'ring fenced' so councils can use it simply to keep the council tax bill down - I certainly see very little evidence of it's use correctly. I know Lancashire County Council does exactly this.

As in the analysis, some of the money may be used to pay salaries and do assessments but visits from social workers and paperwork is a process - it's not a service. And if no service emerges out of it, it's been wasted.

When I talk to people in the 'real world' outside caring, they assume we get lots of help. They're stunned when I tell them that even Carers Allowance stops once you become a pensioner, they think that things like respite are readily available, that social workers actually help us do care things. These are reasonable assumptions but t's not like that.

P.S. Lancashire County doesn't figure on the analysis because it has a history of not responding to these sorts of Freedom Of Information requests until almost threatened with legal action.

Take care - it's about the money

So the changes being brought in by the new health bill will save the NHS and save it money - hmmm .....

Meanwhile Devon is putting it's services out to tender now (even though the bill hasn't been passed) and two of the tenderers are private companies. One, Serco, already has a record of putting people at risk locally - in Cornwall. A child is reported as dying when it's on call service suggested putting him to bed rather than sending a doctor. The other, Virgin Care, is already in a legal dispute with the NHS in Yorkshire. Apparently it feels an NHS organization underbid it - pardon me, I thought that was what this was all about. And if it's care service is anything like it's train service was after it took over the main national north west route, I'd be pretty worried.

Devon is not alone in having jumped the gun implementing the governments health changes before this bill becomes law. It's a visibly and extremely unpopular bill - with doctors, health professionals and patients - only the politicians seem to like it. In their manifesto the Conservatives had no mandate for this bill. What they actually said about the NHS before the election was that they wouldn't interfere by making big changes as there was a need for consolidation. But of course money is far more important to them than care.

If my son were still alive and one of these companies were taking over his service, I'd be very, very worried. For me care is much more important than money. On behalf of the people who need the NHS, I am very, very worried.

It's not 'their' NHS to sell off - it's ours.

Death of Prof. Jim Mansell

I've just learned of the death of Prof. Jim Mansell after a protracted illness. And I'm greatly saddened though I didn't know him myself.

Prof. Mansell wrote the report 'Raising Our Sights' (amongst many other achievements) which was the report that identified how many people there were out there with Profound and Multiple Learning Disabilities, and how badly served they were by current health and social services. But he wasn't negative about it - although his report pointed out how poor the situation was, he also made sure that throughout, it indicated how things could be improved and gave solid examples of best practice which could be built on.

He worked at Kent University and set up the Tizard Centre there that does research into learning disability. People like myself, who had a child with profound and multiple learning disabilities as well as physical disabilities, have much to thank him for. He put our families on the government map. We used his report to justify asking for services for our son - and it worked. It gave us a respectable source we could quote that health and social services couldn't ignore - it proved it was Dept. of Health policy after all and they had no right to refuse us.

Thank you Prof. Mansell. We owe you, and you will not be forgotten.

Police and autism in practice

The Metropolitan Police have been found guilty of assault on a boy with autism and epilepsy who jumped into a swimming pool fully clothed. He is unable to communicate by speech and was restrained by handcuffs and leg locks during a school trip. They have also been found guilty of disability discrimination and false imprisonment. Despite the fact that they have been refused right to appeal by the court they say they intend taking it back to court, yet there is no sign of this incident on their news website.

The action sounds heavy handed in the extreme, and with no comment from the Met. I can only infer that they are too embarrassed to comment and just want this to go away. Things like this shouldn't be allowed to go away. The incident itself is reprehensible but if it's allowed to drift under the public view, it effectively makes this sort of action less of a worry for the police. They'll only stop doing it if they are forcibly told it's wrong.

It sounds to me that the whole incident could have been avoided if the police had dealt with the carers sensibly and not jumped in with both feet. The police should be the ones who protect vulnerable members of the community - not the ones who inflict the damage. This is the extreme tip of a big and expanding iceberg as more people with learning disabilities lose support through service cuts and come up against the law through 'inappropriate behaviour'. If they'd had the right support, I suspect the police wouldn't have been called in at all.

This is a serious matter, I'll be interested to see how long it stays on the BBC news front page.

The road to hell is paved with copies of the Sun

The Sun newspaper has a campaign going - 'Beat the Cheats'. The aim is supposedly to get members of the public to 'shop' people they think are claiming disability benefits who aren't entitled to them.

There are some real problems with this.
Many people have disabilities that aren't visible - many do not use wheelchairs. People with learning disabilities aren't always obvious. People with mental health issues are rarely 'visibly disabled'. People with many debilitating physical conditions may look OK to an outside observer. But the Sun, in it's wisdom, feels it's fine to brand these people as guilty cheats until proven innocent. This is little more than mob justice.

It's also very damaging to disabled people in general. It makes it acceptable to slag off people on disability benefits. It changes the climate so that people feel it's fine to point fingers at people and call them names - and this already happens in public. The Sun may say it doesn't condone this sort of vigilanteism but many of it's readers will take this campaign as justifying the sort of bullying and abusive actions that have driven more than one carer and disabled person to despair, or even suicide.

It also takes no notice of the many disabled people who, through pride or lack of information, do not claim benefits even though they are entitled to them - estimated to be significantly more money saved to the taxpayer than is lost to disability benefit fraud.

The Sun could have got behind disabled people and waged a campaign to get all disabled people the benefits they are entitled to. It could have changed the climate of public opinion in favour of humanity and justice rather than mob rule and vigilanteism. Maybe I'm hoping for too much from the organization that felt it was so far beyond the law that it was OK to hack any phones it liked.

It's major organizations changing attitudes like this that paves the way for the extreme right to say they have public support when they abuse disabled people in public. And if you think this doesn't happen, you haven't been out with a visibly disabled person lately.

Charged with being disabled

Is it right to charge learning and physically disabled young people for transport to schools when able bodied children get transport free?

Politically I'd have thought this was a 'no brainer' but apparently Lancashire County Council seem to think it's a good idea. Under their proposed new charging policies they're bringing in, disabled young people needing specialist transport to and from school are to be charged up to £1,200 a year for transport they've previously had free. This is apparently justified as it will help to make them more independent - not.

If you're an able bodied person who lives over 2 miles from school mostly you get transport paid for by the County Council.

I didn't quite believe it when I found out about this and was worried it might be someone misunderstanding and trying to paint things blacker than they were, but it really is true. In response to the formal consultation, the parents of young people affected are asking for this to be rescinded and are prepared to go to the Equality and Human Rights Commission if need be - I really do hope the politicians see sense and continue providing free transport before this happens. Being disabled is already more expensive than being able bodied. The people providing services for them shouldn't be making it even more expensive - and certainly not on the grounds of encouraging independence!