Thursday, December 17, 2015

Not so little things meant a lot

In various conversations today I learned about a few cutbacks that will have received no publicity, but demonstrate the backstreet hacking of key services to people with disabilities that this government assumes no one will notice.

Lancashire Social Services will now only allow 'social workers' (if they aren't an extinct species up here) to do home visit assessments for people with disabilities if they are classed as 'complex care'. Quite how you decide that without having made an assessment escapes me.  The government cuts to local councils have forced this, but local politicians seem unable and unwilling to oppose them.

It's beginning to look like Contact a Family will lose it's government grant.  If you are or have been part of a family with a very disabled child, you'll know this is a major blow.  Not only did they provide mutual support to families, especially with a severe disability, but they maintained the most comprehensive national database of 'unusual' syndromes.  A very small grant enabled a valuable service to be run on a shoestring with much work being done by volunteers - if anything constituted The Big Society, it was this - disabled families helping one another.

On a slightly different tack, there are strong indications that a major Hospital Trust, not a million miles from Preston, is facing some criticism over how it tick boxes the largely discredited Liverpool Care Pathway.  Particularly how it places them (and sends disabled people home to die) on this pathway inappropriately, largely because of their disability, rather than giving them, admittedly expensive, care that would prolong their lives significantly.

These things make me sad.  I'm oddly grateful that my son didn't have to live through this uncaring period.  I miss him dreadfully, but I wouldn't have wished these issues on him, on top of the disabilities he was born with.

Tuesday, December 8, 2015

First they came for the disabled ...

Can't quite believe Kent hospital put a DNR (Do Not Resuscitate) order on Andrew Waters, quoting his learning disabilities as a reason.

And they didn't even consult his family or carers.

It may have been 2011 when this happened.  It's irrelevant that it was not actually implemented or implicated in his actual death.

An apology isn't enough - it needs an enquiry.

I'm not being madly alarmist but this is how the Nazis started.  Their 'Aktion T4' programme of euthanasia of disabled people actually came before the other larger parts of the holocaust such as jews, socialists etc..

First they came for the disabled ...    No doctor should be so arrogant as to set up a DNR on a person with learning disabilities without consulting both the person and his family/carers.  I would have thought an MDT (Multi Disciplinary Team) meeting at least would be appropriate.  ...and neither Downs Syndrome nor learning disability are any sort of reason for a DNR.

Rest in Peace Andrew.  My condolences to your family.  (and my admiration for their dignity in not looking for any compensation - you're right, it isn't and shouldn't be about the money - it'a all about the care.)

Wednesday, November 25, 2015

Would have been ....

Yesterday would have been my son's birthday.  So we went to a film he would have liked.  Noisy action films aren't my favourite but he loved them.  His carers used to assess how much he'd enjoyed the film by how bad their headache was afterwards.  The film was actually OK and we remembered him.  We also had fish and chips but that's a rather more personal story - his nursing team and family will understand.

Still miss him almost four years down the line - anniversary coming up.

Friday, October 30, 2015

How to throw the Calderstones baby out with the Winterbourne bathwater

It's good news that the government has at long last agreed to stop provision of 'care' for people with a learning disability in 'hospitals' distant from the patients homes.  The Winterbourne View scandal was years ago now and the Budd Report recommended it long ago.

It's bad news that it is to be implemented in an under resourced and careless way that will cause at least as many problems as it will solve.  See below -

If you're going to reduce services on this (or any) scale, you need to put a properly resourced alternative in place to care for and support these people.  Official warning - this is a time of "continued financial pressure" for councils who will have to pick up the bill.

You need to do it carefully.  The closure of Calderstones in Lancashire will be a very large chunk of the numbers that the government will claim towards its target of 1,300 to 1,700 in the next 3 years.  But Calderstones isn't anything like Winterbourne View.  True, the people there have learning disabilities, but 90% of them are there as a result of involvement with the criminal justice system.  They won't be going back to homes in their local community.  At best they will stay there with Calderstones rebranded in a takeover by Merseycare NHS Trust - to take it out of the official hospital numbers.  At worst, the patients will be sent (back) to prisons to be bullied and mistreated - for many, the very reason they were sent to Calderstones in the first place.  Most of calderstones is a secure institution, few of it's patients will end up in the community, but the government will claim it's hitting it's targets.

In all this, bear in mind that it wasn't the official watchdog, CQC, who raised the issue of the abuse at Winterbourne (and other places).  It was family members with support from the media.  (I don't usually like the media, but they did a good job of work on this one.)  CQC did give Calderstones a poor report and there were definitely problems.  But Calderstones was improving and got excellent reports for some of its initiatives.  Simply closing it down is a cynical piece of sleight of hand to massage the numbers and does so at the expense of the care of some of the most vulnerable (and hard to deal with) people with learning disabilities.

There isn't enough money being put aside to give good, local care in the community for the people in all the 'hospitals' that will be closed - that's partly why it's taking such an unconscionably long time.  And social care budgets are still being cut.  If we properly funded good, local care in the community, we wouldn't have remote, abusing 'hospital settings' to close down.

Saturday, October 17, 2015

Gazing at the navel of CQC

CQC have just published their annual report.

The main thrust seems to be along the lines of 'many care services are OK, we're a bit worried that most are unsafe in some way - often because they haven't enough of the right staff - but it can all be sorted out by good leadership.'  So that's really reassured me - not.

It would be difficult to imagine a more complacent piece of navel gazing,
in the face of a health and care service in dire crisis from cuts, privatization, staff reductions and thousands of disabled people being left to fend for themselves.

Someone needs to remind CQC of a few things -
Winterbourne View issues -  'rebranding' it as Transforming Care won't solve the problem - and isn't.
Cuts and 'budget pressures' are not challenging - they're a disaster for the people losing services.
Saying things are improving despite these pressures is akin to praising the re-arrangement of the deckchairs on the Titanic.
Saying that quality is variable, and unsafe services are your main concern, is admitting that CQC is failing to protect people.

You can't solve these sort of major problems with a bit of 'good leadership' here and there - it needs resources, hard work at ground level and a willingness to seek out and eradicate poor and unsafe services.  None of which CQC can provide - tickbox self assessments are not enough.
It has no resources, it doesn't experience the actual care work and it isn't CQC who has blown the whistle on the big disasters - it's TV and journalism, prompted by family carers unable to get anyone else to listen.

The report can be summarized as 'It's been a difficult year, things are pretty bad but we think we're doing OK, considering.'  A rather less self absorbed and more problem solving approach would be more acceptable, but on balance I think I'd rather just have a better regulatory and inspection body than the one we seem to be stuck with.
We may be going to hell in a handcart, but thank goodness we've got CQC to tell us how well oiled the wheels are.

Friday, October 16, 2015

Condolences to the family of Connor Sparrowhawk

My condolences to the family of Connor Sparrowhawk.  So sad to hear about the death of another person with learning disabilities, failed by the care system and a life lost to us.  I find it difficult to comment on this sort of thing as the important thing is the family who have lost a son.

I will therefore only pose a few short questions.
How was a death after an epileptic fit in the bath accepted by anyone initially as from 'natural causes'?
Where was (and is) CQC in this tragedy - and more importantly why weren't they there to prevent it  (Too busy to have carried out an inspection)?
Why is it that the only real check on the quality of care is still the family?

The BBC report on this is at

Friday, October 9, 2015

Consultation - the reality

Last week I went to our local (sort of) Learning Disability Partnership Board.  It's (supposed to be) a forum with representatives of service commissioners, service providers, the people who receive LD services and their family and carers.  When times were good, the council welcomed the input of carers and family members - they had the needs of their LD relatives at heart and were usually the ones actually doing most of the work.  This made Lancashire something of a centre of excellence.  But not any more.

Now times are hard, services are being cut.  We don't like this and had the temerity to say so - not usually in general terms but by raising real concerns about specific problems that were being created. This did not make us popular.  So, Lancashire Social Services tried to silence us, by first reducing the 9 local Partnership Boards to 3, and now reducing these 3 to 1 for the whole county. Unfortunately, the problems didn't go away, so we didn't go away either.

At the last meeting, all the time was spent 'discussing' (read being told) administrative matters like terms and conditions for the meeting.  Whenever someone tried to ask about an actual issue, they were slapped down with either, it wasn't on the agenda for the meeting (because we'd been given no access to setting the agenda) or it was just another thing that there was no longer any money for (as though this stopped it being a problem)

Eventually I became so angry that I walked out.  I don't think Lancs SS even noticed.  And if they had, they would probably have seen it as a victory.  They've already driven away the organizations that provide what little services are left with funding, health and housing had been driven out long ago, driving out the carers and families would be fine for them.  They could then tick the box that says they had consulted and involved the community by having their meeting.  (And they do see this as 'their' meeting - they decide if it should take place, where, when and they chair it) The meeting could then be more easily 'managed' as the only people left would be Social Services and a few people with learning disabilities who they could browbeat and shepherd into whatever decisions suited them.  Result - Lancashire gets it's policies and cutbacks rubber stamped as supported by the LD community.

Liars.   Nasty, manipulative, conscienceless.  

Lancashire used to have a reputation for good LD services, supported by strong, caring community links.  This is no longer true.  Services continue to be hacked for the most vulnerable in the name of 'needful austerity' - and a Labour led council justifies this because the tory government has cut it's funding.  It should be fighting these cuts not being a willing tool in implementing them.

Don't get old if you're a carer

Just a reminder of a long standing benefits injustice that most non carers aren't aware of - and are usually surprised to hear about.  The exclusion of elderly carers from carers allowance.

If you're a carer for someone with a disability, it is strongly recommended that you do not get old yourself.  A vast number of carers are in fact themselves elderly - it's really common.  And carers are entitled to carers allowance (little though it is).  Well not quite true.  If you start to get a state pension, you will normally have your carers allowance stopped.  (It's a bit more complex administratively than this - surprise, surprise - but that's the normal outcome.)

Caring doesn't stop or get any easier when people become pensioners, but the small payment for doing all the hours god sends and being on call for the rest stops - and so does any recognition of the value of all this effort incidentally.

If you're a carer, you probably know all about this.  Most non carers are surprised.  The government (all parties guilty here) are happy to stay quiet about it because there would probably be uproar if the voting public realized, and it keeps the governments spending bill down a little bit.

This is wrong.  It's also heartless, discriminatory and profoundly unappreciative of the work carers do.  Next time you hear a politician praise the invaluable work of a heroic carer, remind him/her/it that he/she/it has no right to speak about this until this injustice is rectified.

Stopping people living

Continuing cuts and distress of friends as a result is forcing me back onto blogging.  So this government wants local authorities to work smarter to save money.  So it insists that all Blue Badge renewals are now done online - so how does an 89 year old renew the Blue Badge that allows her transport to park close to the hospital door when she needs her next blood transfusion (a frequent event in her life.)?

Well, she gets her children or grandchildren to do it for her.  And they have the monstrous paperwork to cope with while she has to go through the demeaning and depressing process of spelling out exactly how disabled she is and everything she can't do any more to the people she doesn't want to say these things to - complete strangers or close relatives.  And she will have to do this every time it needs renewing.

And people are surprised the take up rate for this and other disability benefits, by people eminently eligible, is so low.  (Please don't get me started on the oxygen thieving wankers who fraudulently use Blue Badges just so they can park next to the cash machine.)

The disabled without children or advocates give up - many with children, find it so hard they don't re-apply.  And yes this saves money - because disabled people are deprived of a life.

This isn't working smarter, it's taking life out of people who want to live to save a few pennies.

This is what austerity means in practice and I for one didn't give anyone a mandate to do it.

Sunday, March 8, 2015

Through a glass less darkly

I went to an interesting meeting last week where I actually learnt something about Calderstones.  Not unfortunately about it's future - the NHS are still tight lipped and the County Council are still playing dumb - but at least Calderstones itself seems willing to be more open about what it is, what has happened and what it is doing about things.

Their chief executive came to a local forum and to be fair, did his best to be as open as he could about things.  He accepted and apologised for some poorly phrased comments he'd made and accepted the criticisms that CQC had identified and tried to explain what Calderstones was and what they were trying to do about things.

He was at pains to spell out that Calderstones wasn't an ordinary learning disability 'hospital' that took general social service referrals.  It actually houses a large medium secure unit and although all the people there have a learning disability, and many also have mental illnesses, three quarters of the 200 people there are detained under the justice system - if they weren't there, they would probably be (and many already had been) in prison for serious offences.  The remainder have very challenging behaviour and are mainly there because they are in danger of harming themselves or other people.  This does not of course excuse any excessive or inappropriate use of of outdated and potentially dangerous restraint methods.  This is accepted and is being partly addressed by things like changing the training emphasis from restraint to de-escalation.  All in all I came away fairly convinced that they were doing as good a job as they could given the resources they had.

What I'm still very worried about is the silence of the NHS and LCC over Calderstones future.  The cat (rumour) is out of the bag (someone in Whitehall being quoted) and my fear is that a political decision will be taken, behind closed doors - and if it's to close Calderstones, without any real plan to continue supporting the residents.  Dispersing them back to overcrowded and ill equipped prisons would be a catastrophe for the individuals, the prison system and the justice department.  There is a need for a plan - at least Calderstones seem willing to talk about one.  All we need now is for the NHS and LCC to join the conversation - preferably in the open.

Monday, February 9, 2015

Big hospitals aren't easy (or good)

Calderstones hospital is the one last big NHS Foundation Trust remaining full of people with a learning disability.  There are over 200 people there.  It's in rural Lancashire but many of the people there are from elsewhere.  It's recently had a poor CQC report, mainly focusing on excessive use of out of date restraint methods.  Quite a lot of the people with a learning disability there can't simply come out under 'care in the community' without agreement from the Justice Department.  These are some of the facts.

Much of the rest is rumour - because no-one will speak about it.  Not the NHS, not Lancashire County Council, not Calderstones themselves.  There are rumours that it is to be closed - a 'senior figure in Whitehall' is quoted as saying "we know what we have to do, we have to close Calderstones."  Stephen Bubb, who did the report following the Winterbourne View scandal would like to see it closed.  CQC doesn't seem to know what it thinks - as usual.

There have been suggestions for a plan to close it down in a planned, phased way for over 10 years - but nothing seems to be happening.  From where I'm sitting (not a million miles away) it seems that the management and staff there are doing the best they can in an impossible situation - and failing, though probably not through their own fault.  But that isn't the point.  Calderstones isn't there for the staff or the management or the NHS - it's there for the people with learning disabilities who have to live there.  And if it's not up to scratch, something has to be done.  The fact that this is the result of an under resourced if well meaning organization desperately having to rely on agency staff doesn't make it a good place to be.

It isn't good to be restraining learning disabled people face down on the floor for long periods.  It isn't good to be having some of them live in dirty wards.  It isn't good that their medication is being stored and potentially administered unsafely.  It may be the governments cuts that are to blame for this situation but it can't be allowed to go on.

Also it can't simply be shut down.  Where will the people there go?  On what basis will the Justice Department let them live in the community?  How will Lancashire County Council Social Services cope with such a large sudden influx of people who have a right to live in the area - when they're cutting the learning disability budget by 15% this year.  It isn't easy.  There isn't a quick fix.  But we have to decide to do something.

The most worrying part for me is the silence.  No one wants to talk about it.  None of the responsible bodies has a comment.  The media doesn't care - it's got 'cuts fatigue' and learning disability isn't sexy - until it goes wrong - like Winterbourne.

Tuesday, January 20, 2015

Blasted from the past

Almost exactly a year since I last posted here - doesn't time fly when people aren't enjoying themselves.  So here's a small leak for you to mop up (the last time we noticed something like this, the web page vanished very quickly.)

I felt compelled to comment on Lancashire County Council's latest round of cuts -
   20% cuts to physical disability services
   15% cuts to learning disability services
   7% cuts to elderly persons services
and the Labour led council are so ashamed (even though they've been forced into it by the governments cutbacks) that they aren't even announcing it publicly.

We've only found out because they are legally obliged to 'consult' service users.  So they've quietly slipped out a web survey deep in their website with these details with no publicity, hoping no one would notice.

Here's the website link

below is my own personal commentary with selected quotes.

Changes to adult social care services questionnaire ...”
supposedly a consultation on how LCC intends to axe care from adult social services in 2015.

“….The county council spends over 40% of its budget on adult social care. We have already had to make very difficult decisions about changes to social care services. In 2010 we raised the social care eligibility criteria, which has meant fewer people receive our services. We also increased the charges for services...”
and don't we, as service users, know it...

As well as a reduced budget there is increasing demand on adult social care services because of changes to the population structure due to increased life expectancy...”
so the response seems to be, more demand, less service ...

We don't propose to change the support we offer to carers. However, some carers may find that after the person they are caring for is reassessed the service user may receive less support from us...”
so we won't cut what we already don't give you, but we will expect you to do more care for free...

Work has already been done to reduce the learning disability service budget by changing the supported living service we provide for people with a learning disability.”
so we've actually already decided to cut services for people with learning disabilities and we're only asking you turkeys to vote for Christmas because we have to by law...

We propose to:
• reduce the physical disability service budget by 20%;
• reduce the learning disability service budget by 15%; and
• reduce the older people service budget by 7%.”
this is what we mean by consultation – we tell you what we're going to cut and by how much – we don't give reasons, we don't give arguments, we don't actually give much care any more either ...

People assessed for social care services after April 2015 will receive less support from us than at the present time. People already using our services will be reassessed before the end of March 2016 to see if and how their support arrangements might need to change. For many people this will lead to a reduction in their personal budget, but it will depend on the outcome of the reassessment.”
your service will be cut and this is how and when we'll do it... Tough.

The whole tone of this document is not one of consultation.  'We'd like to consult you, but before we do, this is what we've decided to do anyway.'  The words in quotation marks are taken, out of context, from LCCs questionairre. This isn't fair, but it isn't as unfair as the cuts that are proposed.

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.

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?