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.

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.

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.

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.

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.

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.

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 http://www.dpac.uk.net/2012/07/our-atos-games/

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.

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 http://www.guardian.co.uk/society/2012/jul/24/learning-disabled-athletes-olympics

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.

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 http://www.bbc.co.uk/news/uk-england-manchester-19151918

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.

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.

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.

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.

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.

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.

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.

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.