Wednesday, December 19, 2012

Don't go back to the future

Parts of the past were truly horrible places.  Parts of the future could also be pretty nasty if some extreme politicians standing for office in this country get their way.  I had hoped that no one would even think that enforced abortion for foetuses with disabilities to prevent them "being a burden on the state and families" was a possibility these days - apparently not.  Even UKIP has had to disown Geoffry Cllark in Kent for his "abhorrent" views.

These views have been put before - in Germany, by a party led by a Mr. A. Hitler, some time ago.  The phrases used then were 'useless eaters' and 'life unfit for life'.  The T4 programme sent many people with a learning disability to their deaths following a law passed on 14th July 1933 enforcing compulsory sterilization, even before the mass exterminations of Jews and Roma.  Modern Germans would not consider this - we shouldn't either.

This should not even be up for discussion.  I don't advocate press censorship - simply humanity.  And I'll give it no more space than this.

Tuesday, December 11, 2012

Sitting tight

How do you get out of your (moulded/matrix) wheelchair (you normally sit in a hook and loop sling) when you go into hospital?  - to get into a bed, to have an x-ray, to go to the toilet?

It's a lot harder than you might think.  It hasn't got any easier over the last few years despite being raised innumerable times with the hospital(s) in question.  And it's roots go back to the early days of the private sector getting its hooks into the NHS.

Let me tell you a story.  Once upon a time in a land not a million miles from here, many years ago, a clever hoist manufacturer did a clever marketing deal with its national health service.  The deal was that the hoist manufacturer would provide free portable hoists, in return for exclusivity in hospitals and the health service would commit to buying only their disposable slings.  Everyone's a winner, the health service doesn't pay for expensive hoists, hoist manufacturer gets a monopoly and a guaranteed income stream for the forseeable future.

Except for the disabled people who live in the community - who have to use hospitals - quite a lot.  Because they are provided with 'hook and loop' hoists and slings in the community that are incompatible with hospital hoists - which incidentally are quite nasty to use if you have a spine that isn't a 'normal' shape (the metal 'hangers' bash you in the face etc.) - and surprise, surprise, lots of disabled people have spinal problems.  Some people also think the hospital hoist's 'button' clipping system isn't safe for these people - I couldn't possibly comment.

Anyway, some, PMLD (profound , multiple learning disabled) people turned up at hospital because they weren't well.  They were all, as normal, sitting in their moulded/matrix wheelchairs, sitting on their slings (which is how they'd been hoisted there as normal).  One needed to get into a hospital bed - but he couldn't because there was no compatible hoist in the hospital - how inconsiderate of him - so he had to stay in his chair.  One needed to go to the toilet - but he couldn't because there was no compatible hoist in the hospital - so he wet himself, nasty man - and he had to stay in his wheelchair.  One needed an x-ray, but because his chair had lots of metal components in the back and there was no compatible hoist in the hospital, he couldn't get it done properly - how difficult of him - so he had to stay in his chair and have a completely unhelpful x-ray.

So the lesson is - each hospital should have at least one 'hook and loop' compatible hoist that can be sent to wherever a very disabled person in the hospital needs it.  This all happened a long time ago, but not very far away, so you'd think everyone had learned the lesson.  Certainly the disabled people and their carers learnt a lesson - avoid having to go to hospital if at all possible.  But the hospital didn't learn any lesson - it just carried on regardless - and it still does.

We wouldn't let this happen here, would we, even if changing it was like pushing water uphill.  In one instance, a disabled person had to sit in one position in his chair for 8 hours.  In one instance, the useless x-ray didn't detect a chest infection.  In one instance, the carers had to sneak in their own portable hoist from home to relieve the disabled person.  This isn't how a caring or compassionate health service operates - but it's how this health service acts, even after repeated complaints.  We will get it changed, but it shouldn't be so hard - and it shouldn't happen here.

Saturday, November 3, 2012

Expensive, unhealthy and dangerous

A comment heard outside here, prompts me to expand a little on some misconceptions about sending people to places like Winterbourne View.

Placements like these are often much more expensive than decent community care or local support, it isn't usually Social Services who place people with learning disabilities there and they are conventionally used to solve a crisis but end up becoming a semi permanent 'home'.

They're expensive because they're not just private sector, run for a profit.  They accept people at short notice and so conventionally run at under capacity.  (They do also make obscene profits from peoples misery.)
It's often the NHS (in the guise of the local PCT) rather than Social Services, who refer people to these places.  They do this because it's an easy, quick response to a crisis - which could usually be solved better locally, but they can't get their act together quickly enough.  having watched Panorama, we could name any number of learning disabled people who were similar but living fulfilled lives in the community.  They're not the most difficult 'cases'.
It's often done where the person's care is being paid for under 'Continuing Health Care'.  Under this the PCT can take whatever decisions it wants without the agreement of family or carers.  Continuing Health Care is fully funded by the NHS, so is often 'sold' to families as free care home provision - but family then lose all rights over what care is provided - this is rarely made clear.
People get sent to places like Winterbourne in response to a crisis, ostensibly 'for assessment'.  But as NHS/Social Services staff are overstretched and subject to high turnover, the 'cases' doesn't get looked at again and rarely by the same person, so the person stays there - inappropriately and at great expense.

These 'hospitals' are dangerous, out of sight, out of mind places.  They're often 'locked' and have only public access to reception areas - they're the modern day asylums, albeit with nice decoration and decent toilets.  And they're prime places for abuse to thrive in secret.  So much so that it becomes the norm and even covering it up becomes a part of normal procedure - "always fill your restraint forms in" etc..

CQC should be actively working to close down these units.  It would improve care, prevent abuse and save money.  This is such a 'no brainer' there isn't even a need to rant.  So why aren't CQC doing it?

Monday, October 29, 2012

Winterbourne View, take 2

So shunting people from one hospital warehouse where they are abused to another doesn't work. What a surprise - and what a tragedy for those people that the 'powers that be' thought it would.  Panorama's second take on what happened to the people abused at Winterbourne is being screened this week.  Look out for it.

My sympathies to the people and families who've been let down yet again.  This has to get better.  These are real people not an abstract issue.  Yes we need to stop it happening again to others - but we also need to make sure that these victims and their families get a good placement with a decent quality of life.  Where is CQC in this?  It should have been actively preventative of further abuse.  Reacting to another 'safeguarding alert' isn't enough.

Making the case for complex care

An interesting piece of research just published about what works for people with complex care needs. It makes what may be the obvious points - that person centered plans work, multidiciplinary teams and intensive interaction are vital, that continuity of social workers involvement etc. is needed, that transition from childrens to adult services is complicated.  These may seem obvious to those of us who've lived the system, but no matter how much lip service commissioners etc. pay to the value of these things, they're exactly the things that aren't there.

The value of this research is that it makes respectable, something we all know - we now have something we can quote back at commissioners who only provide 'generic' social work, who won't put the resources in to provide intensive interaction, who see person centered planning as the first and easiest line of cuts.

I don't pretend it will solve the issues.  But like the 'Raising our Sights' report, it gives what we've been saying all along a 'respectable father' to quote.  We still have to make the case.  Hope you find it helpful.

Wednesday, October 24, 2012

If it works, break it

Today I got angry - and then had to calm down.  I was at a meeting with officials, carers, 'providers' etc. where we were ambushed by the council who want to cut the most valuable services specialist services we have.  These are very small scale (in staff terms) specialists in Person Centred Planning and Leisure and Recreation (getting a life) Services.  They were originally employed as a pilot, and succeeded enormously in making sure people with learning disabilities actually got Person Centred Plans and actually got access to swimming pools etc. as well as specialist 'recreational' services - things like trampolining physio.  We still had to pay for them, but they were there and they were accessible.

But now the penny pinching cutters want to stop these as the 'temporary' funding is running out.  It's an easy cut because it isn't part of their 'recurring budget'.  And they want it cut despite all the evidence that it's worked and that it's the most valued by carers and service users, service the council actually provide locally.  Attempts were made to railroad us and silence criticism of the way they tried to run what should have been a 'Partnership' meeting.

Surely, if the carers and service users find these services valuable, that should count for a lot.  But in the world of cuts, they don't care what works, what's valuable.  They just want the overspend caused by their own unrealistically low budget reduced.  They haven't cut these formally yet - that's due early next year - this is to soften us up.  What it's actually doing is creating antagonism and opposition.

Rant not yet over.

PS all cuts in the context of benefit cuts through PIP (Personal Independence Payments - don't you just hate the George Orwell type name)  about to take £28 to £70 a week off these most vulnerable people.

Tuesday, October 16, 2012

Abuse and neglect

Abuse of vulnerable people seems to be the order of the day for news at all levels just now.  Nationally there's the 'Savile stuff', but locally we have Bolton council apologising for the physical abuse of people with learning disabilities in one of their care homes with two 'carers' (not really) jailed for things like restraint by tying towels over people's faces and also near Morcambe, six staff arrests at an elderly care home.

Yet in all these, where is CQC?  They seem to be making comments after the event, mainly saying they were monitoring the situation.  What good is monitoring if it doesn't lead to action to prevent abuse?  Fear of abuse in care is a major terror for parents of people with disabilities.  We're fairly sure our son was treated well, but without our constant vigilance and driving of the agenda, things could so easily have been different.  I have a real fear that without constant vigilance, abuse or neglect can become the default setting - especially when cuts are reducing the level of care input.  Where there is no responsible and transparent leadership, the back room bullies take over.

I don't feel I have confidence in CQC to prevent abuse and neglect, tick boxes aren't the answer.  So the only alternative is for carers and families to police the standards of care, with all the help we can get from staff whistle blowers with a conscience.  Another parent I knew, when asked by Social Services what single thing he could do to ensure his son was well looked after, replied, survive for as long as I can.  I can empathize with that.

Watch for the signs of abuse and neglect - and ask questions when you think you see them.  No one else is going to do it.  It isn't a nice thing and it won't make you popular, but it's better than letting the abuse happen.

Thursday, October 4, 2012

It may be inhumane but it isn't news anymore

I don't intend to comment much on this Guardian report of a lady with learning disabilities being classed as 'fit for work' by ATOS.  Suffice it to say, my view is that this is just another example of how unfit for purpose and discredited the new disability tests are and how incompetent and inhumane ATOS is at implementing them.  Unfortunately this is becoming standard practice rather than news.  I'll make my own noises to local politicians, suggest you do the same.

Tuesday, September 4, 2012

Boos at the Paralympics

It seems George Osborne, Chancellor of the Exchequer, has at last heard what the disability community think of his cuts to services.  he was booed by the audience at the Paralympics.  Quite why they didn't boo his boss, Cameron, I'm not sure.  Not sure the press will pick this up though - it's not a 'happy heroic' disabled story - being disabled isn't.

Tuesday, August 21, 2012

I don't want to live in Worcestershire

I'm sure it's a perfectly nice place,  Beautiful landscape, probably very nice people.  But not a good place to be if you're disabled.

The County Council there is proposing to limit the amount it will pay on social care for disabled people to a maximum of what it will pay for residential care - currently estimated at £411 a week.  What this means in practice (assuming the proposals go through) is that many of the new people coming into adult social care, or  existing people with a disability whose circumstances change at all, will no longer be able to live independently.  They will either have to go into residential care or find a 'free' way of filling the care gap - family carers doing it for nothing again or going without important items of care.  And the more disabled you are, the less likely it is that you will be able to live independently.  Certainly my own son would not have been able to live 'in the community' on this.

My thanks to the person who flagged this up to me in his comment to my last post, and to the various people who are publicising this invidious proposal - Sue Marsh in the Guardian , Mithran Samuel in Community Care and Lucy Series in her The Small Places blog .  To its (slight) credit, Worcestershire County Council has spelt out it's policy in Easy Read form so that people with a learning disability might have a chance of seeing how it intends to cut their services - if they can find it on their very complicated website.

If Worcestershire get away with this, other Social Services Departments will quickly follow on.  Tell your disabled friends and their carers that - you don't want to live in Worcestershire, and why.

Tuesday, August 14, 2012

Life blood money

So here come the Paralympics.  And that's good.

But look a bit carefully at who's riding the bandwagon.  One of their major sponsors is ATOS.  Remember the name?  The company that has the DWP multi million pound contract for cutting down the number of people able to claim disability benefits.  The company that loses over a third of appeals against it's recommendations.  The company that Panorama exposed a few weeks ago for it's inhuman treatment of classifying disabled people as 'fit for work' when they were in fact terminally ill and definitely disabled.  Whose own medical people described the assessment process as 'toxic'.

ATOS has also provided the IT systems for the Olympics, but for it's disability assessment clients - 'computer says no' is routine.

This is not just negative rhetoric.  One local charity I'm involved with, conservatively estimates that 15% to 20% of the learning disabled people it currently supports will lose all their DLA mobility allowance when they are reassessed to go onto Personal Independence Payments (PIP) - £70 a week each - and all of the rest will lose some of their benefits.

Cheer on the athletes.  But don't let ATOS get the PR benefit they think they're paying for.  Disabled People Against Cuts (DPAC) are co-ordinating protest action against ATOS at the Paralympics and they need your support - see them at

If you can't take part in the Paralympics, you can take part in stopping this money grubbing multinational using our Games for their PR.

Saturday, August 11, 2012

Special Olympics in Paralympic Games

Special Olympics operates all the time and is aimed at building the self confidence of people with a learning disability.  For the first time in 12 years, people with a learning disability are being allowed to compete as part of the Paralympic Games next week.  The learning disability events were dropped from the Games 12 years ago when a Spanish basketball team was suspected of faking learning disability to win in the Paralympics.  There's an article in the Guardian at

This is something positive about learning - and other disabilities.  They need your support and their profile raised.  Watch them and talk about it.  I will be.  It's only a little thing but every little helps.  If you, or a learning disabled person you care for is interested, contact Special Olympics even after the Olympics are over - they operate all the time.

Best wishes to all our learning disabled - and people with other disabilities - for the Paralympic Games.  Go for it.

Tuesday, August 7, 2012

Emma Stones

Just a short post in memory of Emma Stones who died of septicaemia and "inadequate care" in hospital recently.  Hospital isn't a good place for people with disabilities, particularly for children and the vulnerable.  Unfortunately it's what we've got.  The one good thing in this is that the hospital in question accepts its failure and seems willing to do something about it.

It shouldn't take a death for this to happen - and it's little consolation to her family.  My condolences.

BBC article on this at

It's all in the numbers

After much cajoling and threatening, we've eventually been told the number of people in our area who have a learning disability and the number who receive a service.  It works out at one in five - the rest are 'not known to Social Services.  I thought there must be some mistake, so went back and checked - had they included all the people they funded through other organizations, Direct Payments, etc. etc..  And yes they had.

What I found as worrying was the lack of concern about this.  Quote, they will mainly be people with a mild learning disability who don't need any service, and even people with 'moderate' needs no longer qualify for a service under the latest local cuts.  So, not a problem then!

Yes it is a problem then.

These are people, probably living with parents at home, who have a real disability.  They need help and it should be available.  And if it isn't, that's a problem.  How disabled do you need to be to need help?  These people haven't even been assessed (but maybe that's one other stress they're better without) so how do they know?

I'm told by Social Services that this level is about average nationally.  I don't know how true that is.  My main concern has been people with a profound disability and complex care needs - our son was in the 'critical' category, so wouldn't have been directly affected by this.  But there's only 'substantial' in between 'moderate' and 'critical', and some councils have already tried to limit care for 'substantial'.  Accepting these situations is what makes cutting services for everyone easier - we've certainly been told in the past to think ourselves lucky - if he'd been less disabled we'd have got nothing.  What sort of logic is that?  No one is lucky to be disabled.

For anyone interested, the total number with a learning disability comes from the Joint Strategic needs Assessment and is based on research, much of which is done by Prof. Emerson and friends at Lancaster and other Universities.

Tuesday, May 15, 2012

Is this a poison apple I see before me?

I see in todays 'news' that the government is to push Personalization and reduce statementing of children.  These are not news, but I do find them worrying.

Reducing the number of children with a statement may seem innocuous.  But what it means in practice is that education authorities will no longer be obliged to provide the support services they currently do to many children with moderate disabilities.  It's a cost cutting measure.

Making Personalization, and it's close bedfellow Direct Payments, the main aim seems to put parents in charge. But our own experience of how Personalization is in fact being implemented by councils is that it is actually being used to cut costs rather than put families in charge.  Contrary to public perception, the money can't be used for anything - only for specified things - not always the most appropriate ones.  It also puts the organization and admin. load onto carers without paying for it.  It also allows councils to provide no money for 'unmet need' i.e. the care provided free by family carers (whether or not they get carers allowance, which pensionable carers don't).  It is good for some people, but they can get it anyway.  It doesn't work for everyone - if a person has no family care network, they have no voice and are thrown back on an uninterested local authority.  Underfunded, like Care in the Community, it's being used to cut costs.

These announcements are cynical PR exercises which in fact disguise more cuts by the back door.  They sound good - and if done properly with enough funding, like anything else, they might well work.  But the money is being cut.  And the money provides services.  No matter what administrative process you use to distribute it.

Snow White's poison apple comes to mind.  There'd be a cartoon in this, if the press hadn't bought into the PR message.

Saturday, May 12, 2012

Change happens

Life is gradually changing for us.  We're no longer carers and it's just beginning to dawn on us.  We miss our son enormously and there are reminders everywhere - and I don't mind them at all.  Bereavement has been difficult - surprise, surprise.  But it's put into perspective how I view all the other carers and disabled people I know.

I always did have respect for them, but as 'one of the gang' that respect was a little tempered by inevitable comparisons between us and them.  I now have some idea of the gulf between carers and those without a caring responsibility.  It isn't just the sheer hard work and time consumption, it's also the continuing mental stress and closed focus you're forced to live with.  Not having to do all the care, and not having to keep one ear open for the problem phone call, is very odd when you've lived with it for almost 30 years.

We've had a sort of (unwelcome) release.  People with disabilities have no prospect of that and still have to get on with living.  Their carers have the ongoing uncertainty and prospect of a demanding role with probably their own deteriorating health and capacity.  The respect both are due is massive.  They rarely get it.

  • I'm afraid I don't find the sentimentalism of 'aren't they wonderful' very helpful.  
  • I find the TV makeovers installing disabled bathrooms demeaning - when there is government funding but it's cash limited so that only a tiny proportion of those who need it, get it.  
  • I object to the media insisting that disabled people and their carers have to be either victims or heroes.  They are real, ordinary people coping with extraordinary circumstances.  We can do something about the circumstances - and just praising them isn't what's needed.  What's needed is real services, real access.
  • Accepting charity (as we've had to do in the past) is not nice - we are grateful, but we shouldn't have to be.

Respect the disabled.  Respect the carer.  But do it practically - make sure your taxes get used well.

In honesty, I'm not a carer any more.  But I do have the responsibility to do my best by them.  I will continue to  fight for their rights and against the systems idiocies.  Whether I'll continue in anonymity as Ned Ludd (as I no longer need to) is another matter.  And it doesn't matter.  There will be a few weeks intermission while I do something involved in 'getting a life'.  After that I'll decide whether to carry on as Ned or come out of the closet and concentrate my efforts in public.

Monday, April 23, 2012

Not fit for purpose

How many more Winterbourne Views, Wirral Borough Councils, Beech Tree Schools and slapped older people does it take to convince the 'powers that be' that CQC isn't up to the job?

Reducing it's staff, appointing senior people from authorities under investigation themselves, and giving them wider and wider areas of remit with no more resources, can't be the answer. There is an urgent need for a replacement body focused on ensuring quality - not an incompetent watchdog focused on the least bad care.

If ever there was a case for Person Centred Planning this is it. Lets have a watchdog that is properly resourced that rewards good practice, that uses the army of people who understand care - family carers, and recognizes the contribution they can bring.

We need the whistleblowers - but they need to be taken seriously.
We need inspections - not a reliance on self assessment checklists.
We need best practice - not a failure to even prevent worst practice.
We need something other than CQC that can help the good care providers get better models of care accepted by bureaucratic local authorities as well as prevent poor providers abusing people. If there are no carrots, the stick just becomes something to be avoided - and poor providers will always be able to hide their bad practices in a situation where care happens behind closed doors.

Care can be good, but as constituted at present, CQC won't make it good.

Tuesday, April 17, 2012

Look in your own back yard

It always surprises me when NHS and Social Services officials look disbelieving and stunned when someone points out to them exactly how disabled People with Profound and Multiple Learning Disabilities are, and how many of them there are in their area.

At a meeting today where this was spelt out and the 'officials' reactions were very sympathetic, but they were surprised. They shouldn't have been. In the audience (general carers in the county including elderly etc.) were parents of at least four people I recognized who have these complex care needs. Things like being non verbal, unable to walk, unable to swallow, needing oxygen and/or airway protection on top of learning disabilities, epilepsy etc. etc.

They should know. We've been telling them for years what the issues are and the Raising Our Sights report made it official in 2010.

I'm fairly convinced that the real reason is that they are expensive and difficult, so they get passed on and on until they get dropped or a crisis takes them out of the account. This may be their death, or their being shunted into the back room of a mediocre nursing home where they're left to scream with the radio turned up so no one can hear them. (This example is real - the lady in question was 'rescued').

I don't think the officials are bad people. They just don't want to believe they are failing these people so spectacularly.

And saying 'I don't know how you do it.' sympathetically, to a carer who is doing it 24/7 isn't even patronizing - it's insulting.

Saturday, April 14, 2012

Demonizing disabled, demonizing carers

I can almost live with Matt Lucas and even Ricky Gervais - their comedy isn't helpful, but it is after all meant to be entertainment and not taken seriously - them or their comedy.

I find it much more difficult to accept the sort of comments that at least one (Labour, for god's sake) councillor is on record as saying - and I've heard similar from a relative. That families with disabled children are getting their houses adapted with grants so that they can increase their property values. It's not just crass and incorrect, it's another step down the road of making it acceptable to brand disabled people and their carers as scroungers. As though we'd accept having a child with cerebral palsy, or being born with a learning disability in return for money. I imagine there are politicians out there who would sell their body and soul for cash, but I don't know any people with disabilities or their families who'd accept being paid to have life limiting conditions. Politicians shouldn't judge ordinary people by their own twisted standards.

I would have given any amount of money not to have needed to adapt our house so we and he could cope with his disabilities. I'd still like other places to be accessible and have spent lots of my own money on things we/he needed which non disabled/non carers would have used for holidays and surround sound TVs. Being disabled costs money as well as being limiting in it's own terms. To suggest we like being disabled/carers for financial reasons illustrates the profound lack of understanding of what disability means in the real world for real people. It's not that we don't care about money - we're forced to. But it isn't our first, or probably second, third or fourth priority. Our own priorities went something like - first, making sure he could breath, second, keeping his fits to a minimum, third, making sure he was as comfortable as possible, fourth, trying to get him as good a life as possible. We needed money to do some of these things but the money itself isn't that important.

These sort of comments make it acceptable to discount people with disabilities, make it acceptable to slag them off and ultimately make it easier for politicians to make cuts to services for disabled people.

I know the councillor in question has since apologized - and no doubt my own relative would say of course he didn't mean us - but the damage is done.

Monday, April 2, 2012

Tax credits for carers info

If you're a family carer who works limited hours and gets tax credits, you may have had a letter from HMRC/tax office saying you're going to lose some tax credits. Be aware this may be incorrect. I don't understand the full details (as we were on state pension we didn't get carers allowance or tax credits) but Martin Lewis of BBC's Money Box programme has the details. The relevant bit is about half way down in the 'Do you qualify section?' and involves carers exceptions. There seems to be a 6th April deadline, so you need to contact HMRC quickly if this affects you - it could be £'000s a year.

Hope this helps.

Saturday, March 31, 2012

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.

Friday, March 30, 2012

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.

Saturday, March 24, 2012

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.

Saturday, March 17, 2012

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.

Thursday, March 15, 2012

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.

Wednesday, March 14, 2012

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.

Tuesday, March 13, 2012

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.

Monday, March 5, 2012

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!

Saturday, February 18, 2012

Disability workloaded

Thanks to one of my contacts for drawing my attention to one of the nastier bits of the current governments disability legislation - see Guardian article

They seem to be giving themselves the power to insist on disabled people being forced to take work at no pay while on benefits for an unlimited time. Now god forbid I'd want to suggest they wouldn't be sympathetic in implementing this, and I'm sure they'd not actually insist on really disabled people taking up jobs that would damage them, or terminally ill people having to work until they're given less than 6 months to live, or making disabled people work for less than the minimum wage straight away. But if they really are that humane - why do they need the powers to do all these things? The defence that 'we wouldn't actually use these powers that way' just isn't good enough. If they're not going to do it, they shouldn't make it legal.

There are a number of powers in the current governments health and 'welfare' legislation agenda that smack horribly of a desire to return to the
workhouse or worse. There are also even more sinister overtones which seem to want to brand disabled people as a 'problem'. We have seen this before - in the eugenics movement. Pastor Martin Neimoller famously warned of this.

Unfortunately he was wrong - First they came for the disabled. (Ultimately resulting in Aktion T4).

Tuesday, February 14, 2012

Wirral council fallout

So the politicians in Wirral are now arguing about whether they should force one another to resign over their financial abuse scandal.

But in the press coverage, the fact that the actual abuse and whistleblowing was an institution taking money it wasn't entitled to from real vulnerable people with learning disabilities seems to have got lost. Yes they are being compensated - reluctantly, after the council was ordered to by a judge, and they had to live in poorer circumstances while they were being cheated.

I don't really care which politicians resign - or not. I do care that this happened in the first place and I do want to see other councils make sure it isn't happening in their areas - and there isn't much evidence of this happening. My impression is that no individuals benefited from these people being cheated. It's just the finance department managed to save money for the council when it should have been social services in control, ensuring these people got what they were entitled to.

People should come before money, here concern over money took precedence over care for people. And politicians publicly battling over their own political skins without acknowledging what actually happened and who really got hurt, isn't very edifying.

NHS not for sale

I'm conscious that some of the people reading this seem to be from from America. It surprises me you'd be interested but you're very welcome. This weeks Panorama TV programme about poverty in America made me think how fortunate we are here.

I'm conscious there's a big health care and welfare debate over there and I'd just like to make the point that I'm not against the NHS generally - my son would never have survived without it, beyond a baby. Health and social services here, in the main, work. The issues I raise in this blog are about the failings any system will have - particularly big systems - and getting them put right. Many of these deficiencies are a result of current policies to move closer to the privatized, American model.

I'm a major backer of the NHS and social services and want it improved not cut back. Under a privatized system, even if my son had survived (unlikely), we would have been bankrupt long ago, and I wouldn't be able to afford a computer or internet access, so wouldn't be speaking here.

Health and welfare in Britain are a bit like the BBC. They do get things wrong but we'd be lost without them. If the 'Big Society' means anything at all, it's already here with everyone (almost) committed to making sure everyone has a decent chance in life - the NHS and social services are a major part of this.

Tuesday, January 31, 2012

Politicians doing what they promised

Politicians doing what they promised is rare - and not always good.

In Lancashire, last year, the County Council decided to cut services drastically over the next x3 years. They did last year (year 1) and now say they will carry on exactly as promised this year (year 2) to make even more and deeper cuts - but it's what they agreed last year, so no need for discussion.

This despite their having made, by their own publicity, more 'savings' than expected and having had a £50m windfall payback from the Landsbanki debacle. They justified their cuts last year by saying they were not set in stone and would keep them under review - there is no evidence of any review process, though we know of many actual cuts causing real distress. If major sources of unexpected income don't warrant any review, I'm not sure what would.

This council wants to cut services. It sees vulnerable people only as a drain on its resources, not an opportunity to be humane. Some people up here think councils should be a service, not a business. We are not customers, we're people.

The council is obviously Conservative, but I see little evidence of Labour objecting in any strong terms - their strategy seems to be 'let them do the nasty cuts and we'll be able to blame them when it all gets so bad we get back in power'. We are not voters, we're people.

I hate having my personality 'bacon sliced' into being a voter, a customer, a service user, a carer etc. etc. I'm a person and I'm bigger than any of these things. And sometimes I'm vulnerable and need help.

Tuesday, January 17, 2012

The shape of things to come...

After the abuse of people with learning disabilities in an institution - Winterbourne View, as seen on Panorama, you'd think that institutional abuse would get more publicity. But the financial overcharging of 16 people with learning disabilities by Wirral Borough Council - for which the courts have insisted the council repay £250,000 for overcharging since 2000 (with more to come from earlier), barely gets a mention.

There is a small article tucked away on the BBC website but little mention elsewhere and practically no 'pick up' by organizations such as Mencap - yet. Yet the implications are potentially enormous. The bullying of, and attempted 'payoff' of the whistleblower (which he turned down) are indicative of one problem which I suggest is as prevalent in many NHS and probably many Social Services Depts.. What is also an issue is that Wirral has been 'found out' whilst similar practices may well be going on in many other authorities.

I'm not suggesting this was a malicious or mendacious abuse, (though the people who were given access to these people's bank accounts indicates desperately poor practice). Rather that it flags up what can happen when the priority is to get as much income in and pay out as little as possible by an authority with control over vulnerable peoples finances - and finance has a higher priority than service quality or vulnerable people's rights.

The current climate of cost cutting is a ripe environment for more of this sort of abuse to happen when the finance is more important than service. If Wirral is the only Borough doing this, I will be very surprised.

Monday, January 16, 2012

And still it goes on ...

We had hoped for a little measure of closure as our son's specialist equipment was taken away following his death - but that would be too easy.

Our booked collection visit from the local Community Loan Store happened this morning, and now the adrenalin is running yet again. We'd carefully checked the various seating equipment, toilet chairs, hoists and slings against the list we'd been given and collected it all downstairs ready for collection. The men with the van arrived, took one look from the doorway and said 'not ours, not taking it'. There followed a tense 20 minutes of asking what they had come for (no answer) and who's it was if it wasn't theirs (and who we could return it to - no answer). In the end one of them (obviously some sort of manager) phoned in and was authorized to take it all. They seemed to want to blame us for having made his equipment last and it not being new stuff, and appeared to have no real idea of what they were supposed to be collecting - despite this visit being the result of a number of detailed phone calls and e-mailed lists. They were obviously stunned when told he'd had some of this stuff for over 10-20 years.

They did reluctantly, and with bad grace, take the stuff away. But left us angry and stressed. I really shouldn't have to get this assertive at this sort of time. For god's sake, I'm not stealing the stuff, I'm trying to give it back to be re-used (though I strongly suspect it will all be in a skip by this afternoon, despite being worth £'000). I suspect we'll now be contacted by someone with a different list wanting the stuff again because the paperwork is a mess. There is more stuff still to go.

The humanity in the NHS these days is being gradually paperworked and procedured out. We'll grieve properly when the clipboards and lists have gone away.

Friday, January 13, 2012

Time after

We buried my son last week. It was a good day - all about him, lots of friends, family and people who cared about him (some paid, some not - all cared). It rained hard, but he liked the rain - we'd take him for walks in it because he enjoyed it as long as he was well wrapped up and warm. So he had the last laugh at us being drenched - it would have amused him. And afterwards everyone went to the hall to see his photos and talk. And it wasn't miserable or depressing, even if we did cry.

We've cried more since - because we miss him, but he's resting now. No more reflux, no more fits, no more pain. And there were lots of good times. One mother said he'd packed more into his few years than her own son the same age, and even more than she had. It's never been about the quantity of life - it's the quality that mattered for him.

So we try to get back to 'normal' life. But that isn't happening yet. We've sorted his bank accounts out (what little there was), paid the bills, cancelled the benefits, notified the treasury, sent back his wheelchairs and a lot of other practicals - and this will go on for some time. There's another van load of equipment to go back next week, a track hoist to be removed, a mountain of clothes to be given away (some specialist for wheelchairs - many barely worn).

Some stuff can go to International Aid and the Women's Refuge but we'd hate to see his things just thrown away when they're in good condition. So we're finding homes for as much of the good stuff as we can.

I know it's early days yet and we will get things together eventually. Still in the 'busy' phase, see what happens later.