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.

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.  http://www.bbc.co.uk/news/health-34938832

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 http://www.historyplace.com/worldwar2/holocaust/h-euthanasia.htm 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.)

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.

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.

Gazing at the navel of CQC

CQC have just published their annual report.  http://www.cqc.org.uk/content/state-care-201415

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.

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 http://www.bbc.co.uk/news/uk-england-oxfordshire-26334445

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.

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.

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.

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
https://www.snapsurveys.com/wh/surveylogin.asp?k=141899162110

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.