Wednesday, January 22, 2014

Ned Ludd's last stand

It's now a couple of years since our son died and I'm not a carer these days.  You've probably noticed that I haven't been posting recently.  It isn't that I've lost interest - but as I don't do the day to day care, the world is a different place for me.  I am moving on, and although I am still involved with campaigning and doing things for people with disabilities - particularly learning disability, it is different.

This will therefore be one of my last posts as Ned Ludd.  I'll try to keep up the work elsewhere.


As a parting shot, I've put in a complaint to the BBC about Casualty and Holby and the way they portray carers in hospital.  While I enjoy the programmes as drama, I get constantly irritated by the way carers are always portrayed as overprotective and smothering, abusive and manipulative or mentally ill and inadequate - and the hospital staff are always nice, tolerant, better informed and paternalistically on the side of the patient (by their own criterea).

It simply isn't true and sets us up as negative stereotypes.  The reality is that carers almost always have the best interests of those they care for at heart, are often better informed about the specific condition than any 'generalist' nurse and are having the devils job getting the hospital to take them seriously and deliver any sort of care with dignity.

If you're a health professional, don't be offended - we know you're massively overworked and under resourced and we don't expect you be an expert in every possible condition - just listen to the carers more.  They often know more than you about their relative.

if you're a script writer for these programmes, please work up some positive plot lines about carers - they are very often the 'good guys' in real life and you have a responsibility to not run them down.  I know it's only drama, but it does set a tone and build up stereotypes.  It wouldn't be that hard to improve - and there is real drama out there.  If you need any help or leads, ask me - or any other carers.

Goodbye,
Ned Ludd, ex-carer.

Friday, January 25, 2013

For Winterbourne View read Munroe House

Winterbourne View, the home exposed by Panorama last year, was owned by Castlebeck.  The individuals abusing the residents were found guilty and went to prison.  So that's all right then, isn't it?  Well no it isn't.  Their main defence put up by the individual's  lawyers was "the Castlebeck way" of doing things - the organizations culture.  But Castlebeck has been sold to a set of banks (and we really trust them don't we?) and entrepreneurs, who've put in a 'turnaround specialist'.  So that should be all right shouldn't it?  Well no, not if the latest allegations are true.

Castlebeck also own a 'hospital' called Munroe House in Dundee, where 5 staff have just been suspended, the police are investigating complaints and the local MPs are starting to ask for a full inquiry.  Does it remind you of anything?

How many chances should a set up like Castlebeck get to do the right thing?  CQC (and it's Scottish equivalent) have let it carry on because closing it would generate too big a 'gap' in the 'market'.  What about the residents?  For me the solution should be to shut Castlebeck down, put in a different, emergency management at public expense and start finding better living solutions for the people warehoused in these so called hospitals.

I know it would be disruptive to the establishment (at Munroe House, at Castlebeck and at the NHS/Social Services/CQC).  I know it would be expensive at a time of cuts.  And I really don't care about those things.  The only important thing now is the quality of life of the people involved - and that's been ignored for too long.

Saturday, January 12, 2013

Cuts and rumours of cuts

So what is the future for people with a learning disability.  Despite all the trips and failures on the way, I thought we'd come a long way from the old large institutions from before the days of Care in the Community.  We're into the era of independent living and personalized budgets - aren't we?  These days the aim is for people to live their own individual lives out in the community with whatever support is necessary to make this possible.

But then came the cuts.  There aren't any big institutions to close down any more to make the big savings.  So what is our Social Services Department doing.  Well, it seems to be doing two things.

In the short term, it's not closing facilities (there aren't many of them left) but it is trying to cut the number of people it is obliged to support (by making people with 'moderate needs' no longer eligible) and by shaving chunks off everyone else's care and support packages (there's a target of 15% reductions to care packages which are being reviewed - it's only a target, not everyone will be cut - but it's out there in big red letters for social workers to aim for when they do individual reviews.)

And it's actually started planning for the long term.  It's set up a unit specifically to look at what housing and support services it should be commissioning longer term - and it's coming up with a 'model.'  And the 'model' has suspicious similarities to some of the old institutions.  Something like an elderly persons sheltered housing scheme - individual flatlets in a block, with central support (remind you of anything?)  Could be quite small - OK, maybe 100, but could be as small as 40 units!  This would certainly keep costs down - but I seem to remember emptying a lot of things like this a few decades ago.  But surely, this is just scaremongering - no one would actually propose something like this - would they?  A next door authority has recently, and quietly, built a new unit just like this - our authority is just slower off the mark.

So what's wrong with this?  I won't put up a reasoned arguement - just throw out a few phrases.  Winterbourne View.  Learning disability ghetto.  Institutionalization.

It's not the workhouse, but it is on the same street.
It's not a big, isolated mental hospital, but the architecture has real similarities.
It's not a locked ward, but it's a long way from independent living in the community.
And it's coming soon to a place near you - if we don't get these plans out into the open and stop them.


Friday, January 4, 2013

Making me feel bad about doing good

I'm in a bit of a quandry.  As a real person, outside this blog, I've helped a new organization set itself up to directly help people with a learning disability to make their own views known rather than be told what they need.  That's fine, and we have some money to help them get to, and be supported to prepare for and present, at various meetings where critical decisions about them are being made.  What annoys me is that this support used to be provided by Social Services as part of their general support.  Now, without our support, they aren't getting to these meetings because they no longer qualify for support.  So we - funded outside government - are effectively having to spend our money to replace public funding.

This is yet another cut by the back door quality reduction method.  And by helping the people get to these meetings we're effectively accepting this.  In practice, I feel we have to do this, but I also feel that we shouldn't really be letting local and central government off the hook by doing so.  In the end, we can't not do this, because it's the people that matter, not government policy.

I know this is happening in many other contexts where cuts to essential - and more critical services than this are taking place.  But I still feel bad about it.  And I blame the government for making me feel bad about doing something good.  Not looking for an answer - it just feels better to get it off my chest.

If you don't do the care, don't criticize the carers

I'm glad at least someone recognizes that carers are being forced to do more while the government (central and local) withdraws further from its responsibilities to the most disabled and vulnerable.  Thank you Sarah Ditum.  She's absolutely right that there are more carers (evidence shown) and they are doing more each (also evidenced) as services are withdrawn.  She's absolutely right that this government should be saying some sort of thank you rather than berating us for not doing even more.  I suspect Norman Lamb isn't himself a carer - and if he isn't, he has no right to criticize anyone else - whether they are carers or not.

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 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.

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 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.

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 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.

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.