Tag Archives: Paul Burstow

CQC and Castlebeck and whitewash

The Care Quality Commission (CQC) has yet again almost managed to airbrush itself out of existence.  If only it could finish the job properly and be done with the constant whitewashing of the responsibility of the Regulator.  Then the world of care might be a better place.

It took a BBC Panorama programme to open CQC eyes to the abuse that was going on at Winterbourne View hospital in Bristol, and for the CQC then to realise there were ‘serious concerns’ about the quality of care being provided by Castlebeck.   It took an undercover reporter to force the CQC to do the job it should be doing: inspecting thoroughly, reporting efficiently and demanding that action is taken to prevent any care provider from providing neglect rather than care.

When I first contacted the CSCI (as CQC’s predecessor was called then) about my serious concerns about the care my relative received in a care home, CSCI’s Inspector told me that she would contact the manager of the care home.  I heard nothing from the CSCI, so I chased for a progress report.  Much to my surprise, I was told that the manager had informed CSCI that a meeting had been arranged and that “all my concerns had been resolved at the meeting”.  The CSCI believed the manager and closed the book.  There was no ‘meeting’ and my concerns were not resolved.  Far from it.

Then, the mental health care of older people team carried out an investigation into the circumstances surrounding the death of my relative in care.  I was excluded from all meetings, from everything other than an initial ‘interview’ with the investigator.

Then, the Local Authority ‘claimed ownership’ of the report – and continued to exclude me from all meetings.

The CSCI took a back seat, knowing full well that it would bring a cloud over the care provider, the CSCI inspectors, the Local Authority commissioning department etc. if all the details were to be ‘in the public domain’.  It all remains closeted behind closed doors.

How many similarities are there between the report into the circumstances surrounding the death of my own relative and the CQC report on Castlebeck ?

Try these for starters, although I have paraphrased some:

  • problems that need to be addressed at a corporate level – the company needs to make root and branch improvements to its services and processes
  • we have demanded improvements
  • Where there were immediate concerns about people’s safety action was taken.  In the case of Winterbourne View this action led to its closure.  In the case of the care home I was dealing with, it was not allowed to admit new residents for a year, a massive improvement plan came into existence which had to be worked through before any new admissions were allowed.
  • lack of staff training,  poor care planning, failure to notify relevant authorities of safeguarding incidents
  • The registered provider did not have robust systems to assess and monitor the quality of services provided in the carrying on of the regulated activities.
  •  The registered provider did not identify, assess or manage risks relating to the health, welfare and safety for the people who use this service.
  • The registered provider did not operate effective recruitment procedures.
  •  The registered provider failed in relation to their responsibilities by not providing the appropriate training and supervision to staff, which would be required to enable them to deliver care and treatment to the people who use the service.
  • Medication issues
  • Communication issues
  • There was a lack of leadership and management and ineffective operation of systems for the purposes of monitoring of the quality of service that people receive.

As for staffing issues, there are so many people in the real world aware of the fact that care homes are endangering people’s lives by running their operation with too few staff, poorly trained, badly paid, unsupervised staff.  Families are aware of it – what took the CQC so long?

How many Castlebeck’s are there in the world?  I know of one providing Care in the UK!  An animal that is growing daily, getting bigger and fatter and likely to become even fatter.  As long as everything shabby and shoddy is kept hidden, the world will never know.

It took an undercover reporter to shock the CQC into action!  Disgraceful.  I know I’ve banged on about this one before, but it really does begin to make the CQC look even more ridiculously toothless than some of us know it to be.

Why should the Castlebeck report be in the public domain – yet the damning report into the neglect of my own relative is concealed from view?  I wonder whether Andrew Lansley might like to comment on that one!!

As for Paul Burstow’s statement, “as a Government we intend to ensure that that doesn’t happen again” – I’m sick and tired of hearing that one.  Because it does happen again – and again – and again.

Helga Pile, Unison’s head of social care, said: “Elderly care is a service where mandatory regulation is vital to protect their interests. The privatised model means that the time carers can spend with each person is minimal, forcing corners to be cut, and employers see basic training as an expensive luxury.”

“It is not right to try to get elderly care on the cheap.”

The rich care providers grow richer – the people in need of care are neglected and die as a result.  The CQC is part of the problem.

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A care home or a disaster waiting to happen?

This is not something I’d planned to write just yet, but the shocking abuse of people with learning disabilities at Winterbourne View shown in the recent BBC Panorama programme, and the reasons behind the demise of private care provider Southern Cross have troubled me enormously,  so I’ve revised my plan.  I will do all I can personally to raise awareness of the crisis in care that is slowly being revealed.  With help from everyone involved and interested enough to care, we will bring about a change for the better.

I had intended to work my way slowly through the failings of the so-called care system that have affected my own family and my own life before reaching this chapter, but the world has changed, so I will start at the end.

The horrors of the torture of adults with learning difficulties at Winterbourne View long-stay/residential hospital have caused many people to ask questions.  The regulator CQC has so far not come up with answers but has promised an internal investigation.  Paul Burstow, care minister, promises action to safeguard vulnerable people in care.  Andrew Lansley, health secretary, managed to use the scandal to plug his questionable Health and Social Care reforms in his statement on Winterbourne View, and he talks of a ‘serious care review’ (sic).

John Healey, shadow health secretary, can manage only this empty comment on Southern Cross: “Thousands of very vulnerable people and their families will be worried sick by what’s being reported about Southern Cross.”  Ed Miliband is turning into the invisible man, so I can’t find anything of interest that he’s said over the last week – but he did get married recently so the honeymoon may be reason for the sound of silence.

It’s almost as if this bunch of ‘representatives of the people’ have only just arrived on the scene from another planet – but, no, they’ve all been on one side or other of the political washing line for years now.  Wearing blinkers, and all turning a blind eye to what so many real people have had to put up with.  Yes, I’ve written long and clearly worded letters to all of them over recent years, but – just like the CQC did to Terry Bryan, the senior nurse with the big whistle that nobody bothered to listen to when he blew it loudly in their ears – they all stick their heads in the sand, delegate matters downwards to someone who has a high qualification in the ‘copy & paste department’, who then creates a meaningless letter of reply quoting platitudes.  Pointless exercise – and a waste of an opportunity to ‘represent the people’ which is what they’re all paid to do.

I listened to BBC Radio 4’s Any Questions at the weekend.  Some of the panel don’t even know the difference between NHS care and social care, but they are the ones with the power to influence the audience, to make decisions about our lives.  Power is dangerous; power corrupts …. but that’s something I’ll leave for another day, and I will try to return to the abuse of power.

For far too long, the sound of silence has done its best to try to deafen and silence those of us who have not turned a blind eye.

Those responsible for the neglect and abuse of vulnerable adults in need of decent care have managed to create a system that arrogantly dismisses each and every major concern that is brought their way.  People ask how a care home could possibly exist that doesn’t provide decent care.  People ask who is responsible.  People wonder who is to blame when things go so badly wrong.   I’m not alone in knowing how these things come about – read on!!

They’re all in it together.  The care providers, the local authority care commissioning departments, the so-called regulator CQC, the formal complaints procedures that take away the will to live from those who dare to complain, the social services departments, the safeguarding of vulnerable adults units, the MPs who can’t be bothered to care, the Ombudspersons, the police who can’t find a way to help, the GMC, the NMC, the PCTs, the ICO – to name but a few.

After the scandal of Winterbourne View, someone asked “Is this the tip of an iceberg?”.  It is one hell of an iceberg.

Is what follows the description of a care home fit for purpose?  Or was it a disaster waiting to happen?

Please share any answers you may have, because I’ve almost lost the will to live too, but only almost.

A residential care home for 90 frail and vulnerable older people, many with dementia, described as a flagship, state-of-the-art care home, showing ‘the way forward for the future care of older people’, but where:

  • there were no systems in place for appropriate staff selection, staff induction, training, and on-going supervision
  • communication with GPs and other health services was seriously, dangerously and sadly lacking
  • new staff received no induction programme
  • pre-admission assessments, risk assessments did not reflect residents’ needs, follow-up assessments were not undertaken
  • care plans were not written up in a meaningful way, let alone looked at by the staff
  • the staff did not understand their roles
  • there were no systems in place to monitor hydration and nutrition
  • the nursing records did not reflect patients’ needs
  • the care plans did not identify needs
  • the record-keeping was seriously challenged and challenging
  • no charts available for the monitoring of decline in a resident
  • there was no system in place for clinical supervision and performance appraisal
  • nursing staff without chronic disease management training
  • no records kept of any training that was provided, if any was provided
  • no knowledge of or training for diabetes management in place
  • no system in place for routine monitoring of diabetes, swallowing or breathing difficulties,
  • unsigned and undated and often illegible records kept, with entries that were meaningless
  • a total lack of understanding of the need for and reasons for accurate medical/clinical records to be kept
  • MAR (medication administration records) with entries unsigned or countersigned, and changes made without signature or date
  • no records available to give details of the suitability of the staff to be employed in their positions
  • no records available to give details of the employment status of the staff.

I can’t list any more now – but I trust you get the gist of this particular disaster waiting to happen.

Was that a care home fit for purpose?  Or was it a disaster waiting to happen?

But nobody noticed.  Until it was too late.

And yet, the care provider provided the care home with nursing and many others; the local authority commissioning department commissioned it and allowed it to open – so delighted was the local authority that it gave several 25-year contracts to the care provider to provide such services; the CQC/CSCI inspected and found all to be in order – before the ship sank, that is; the social services department found it suitable for vulnerable elderly people to be placed there – but placing them at even greater risk.

Unsurprisingly, the ship hit the rocks.

Then, and only then, did they all go behind closed doors, into a huddle, impose a massive action plan, close it for a full year to new residents – that’s the best that could have been done, although there were calls in the area for it to be closed in its entirety.  But, hey, the local authority had entered into a 25 year contract.  The care provider was in splendid ignorance – at first, but is no longer so innocent.  The care provider is not a novice to this business.  That is one of the most distressing and most depressing aspects of it all.  How many other care homes are there, being run in a similarly shoddy fashion, with careless care being provided to some who because of age, disability or illness are at their most vulnerable and who deserve good care.

My patience has been tried and tested, almost to the point of exhaustion, as I worked my way through each and every stage of the complaints procedure, before being allowed to progress to the next stage, and I haven’t yet reached the end of it all.  It is obscene, offensive, corrupt, squalid and unworthy of the word ‘care’ for this system to be allowed to exist, with absolutely no accountability, nobody prepared or willing to accept personal responsibility, and all behind closed doors, so that the wider world remains unaware of what is being perpetrated and perpetuated.

Over the weekend, I decided to look back over quite a few years.  From just a couple of years:

published 13 June 1998 : ‘In the short term, decentralisation shifts responsibility for funding care to individuals. In the long term, the combination of decentralisation and privatisation may make the costs of care higher than they need be to government and society. In the USA, the loss of control over the finance and delivery of long-term care seems to have increased the cost to government and decreased quality and access for individuals. The effects of these policies have not been adequately studied and understood in either country.’  (Allyson Pollock and Charlene Harrington.  I do wish we would learn to listen to Prof Allyson Pollock!)

published 4 April 1999 : ‘Local authorities have to get as many placements as possible with insufficient money,” he says. “If care is going to be determined by people undercutting each other, we’re going to be in an appalling situation.

published 8 September 1999 : ‘Care homes may be forced to close due to government quality measures.  Care home owners are demanding urgent talks with the government because of fears measures designed to improve quality will lead to home closures.

published 11 November 1999 :  ‘Training has been the Achilles heel of social care with about 80 per cent of the workforce unqualified and an absence of clear employer responsibilities and targets. But a five-year training strategy by national training organisation TOPSS England aims to change this.’

‘It sets training standards and new qualifications for local authorities and the private sector covering a social care workforce of approximately one million. It draws together NVQs and post qualification training, spanning care workers in nursing homes and social services directors. As well as setting targets for training and qualifications, the five-year action plan aims to predict what future skills will be most in demand and how the government, employers, and employees should pay for the training.’

‘And the picture of training to emerge in other areas is little better. Only 19 per cent of staff in homes for people with learning difficulties were qualified and only 23 per cent of staff in homes for older people.’

‘Andrea Rowe, manager of TOPSS England, says the new regulatory regime will be judging care homes on the quality of their training as well as service standards being developed by the government. “They will lean on homes and close them down if they don’t meet the new service standards,” she says.’

‘Private residential and nursing homes claim they face a financial crisis, pointing to a mounting number of receiverships.’

It appears that we have made no progress.  We being the real Big Society ‘we’ – each and every person involved in the decision-making process.   The ones to suffer are the ones in care.  They suffer neglect and abuse because of society’s inability to show that it cares. .

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Panorama – Undercover Care: The Abuse Exposed

It must be impossible to have watched the Panorama programme last evening without feelings of disgust, revulsion, horror and utter disbelief.  The torture inflicted by so-called support workers on adults with learning disabilities was reminiscent of a horror movie.

It’s available here if you missed it, and if you feel strong enough to watch it.  It certainly comes with a warning

Joe Casey, the investigative journalist working undercover as a support worker at Winterbourne View, shot footage on his hidden camera that is almost impossible to describe.  His article in today’s Daily Mail puts into words the scenes transmitted.

Winterbourne View is described as a hospital, run by Castlebeck, a company I’ve never heard of before.   Joe Casey uses the words ‘state-of-the-art’ hospital – I’ve developed an allergy to such descriptions now, because it was a ‘state-of-the-art flagship’ care home that was responsible for the neglect and death of my own relative.

According to Castlebeck’s website, Winterbourne View ‘is a purpose designed acute service, offering assessment and intervention and support for people with learning disabilities, complex needs and challenging behaviour’.

It is the staff at Winterbourne View who are in need of immediate assessment and intervention because of their own acutely challenging behaviour.  Now that some of them have been arrested and placed under police investigation they will hopefully receive a full assessment of their own needs for care, long-term care, with fully trained supervision, support and care.  Their mental health needs should have been addressed beforehand, by Castlebeck who employed them as ‘fit for purpose’.  I hope that not one of them will ever be allowed to work in the world of care again, once they have been dealt with in an appropriate fashion by our system of justice.  They are thugs – not support workers.  They don’t know the meaning of the words ‘support’ or ‘care’.

The management – if there is any – cannot plead innocence and ignorance of the situation.  Local and senior management must have known what was going on, but they ignored the whistle blown by a former senior nurse, Terry Bryan.  He tried to get them all to act – but they all failed to listen to his whistle.

As did the Care Quality Commission.  The horse has always bolted before the CQC gets anywhere near the door.  The CQC does not respond to complaints brought to it by us, mere human beings.  The CQC merely hands those concerns down to the very service that is at the centre of the concerns.   The CQC needs to establish a unit that deals in depth with each and every concern brought to it – and not just as another paper-exercise, which appears to be the only thing that the CQC currently has the ability to handle.  It only takes the CQC to ignore one single concern, like this one highlighted to the CQC long ago by a Senior Nurse, and you can end up with a torture setting being allowed to flourish.  That’s nothing to do with care – it’s all to do with neglect.  I accuse the CQC of neglect in the case of Winterbourne View.  To mention just one establishment that the CQC has neglected.

What is the point of a regulator if a regulator is incapable of regulating?

This was institutional abuse.  Abuse that was seen to be happening and so should have been prevented.

There are other kinds of institutional abuse that can never be seen until it’s too late, but they too can result in the destruction of life.  But the very systems within any care setting – that that the CQC and local authorities are meant to ensure are in place – can be absent and impossible for the person in need of care and/or their relatives to identify as being absent.  That’s what a regulator is supposed to be doing.  Ensuring that every single system is in place to protect those people who are at risk.

The Castlebeck website claims to be proud of its staff trainingCastlebeck has a very strong training and development programme. Staff are encouraged to improve their performance and the performance of others.

The company has appeared in the top half of the Nursing Times Top 100 Employers survey for the last three yeas.

Shame on them all, and heaven help those in the bottom half of the NT’s list.

Unless and until there is widespread recognition that the care system needs a thorough overhaul, nothing will change.  I’m sick and tired of hearing apologies, and “this will never happen again”.  It does.  It continues to happen.  Day by day by day – somewhere in the UK.  Oh yes, I have no doubt that there are good hospitals, good care homes, good care workers out there, but there are also too many shabby, sub-standard operations that are allowed to abuse people.

Alongside a radical shift in attitudes, the language of care also needs to change – I hold the CQC and its predecessor the CSCI responsible for the fact that the language of care is enabling abuse.

CQC statement:  “We apologise to those who have been let down by our failure to act more swiftly to address the distressing treatment that people at this hospital were subjected to.”

CQC has “spoken to the former member of the hospital staff, apologised for not contacting him earlier and offered to discuss his concerns.”

CQC says “We have asked Panorama to provide us with detailed information about the hospital to help us in our continuing regulatory work. We have also suggested that in future we would welcome earlier involvement by the programme in cases such as this so that we can step in to protect people as early as possible.”

Why would the CQC listen to Panorama any more than the CQC listens to people who bring concerns to the CQC?  Panorama is not the regulator.  The CQC doesn’t care enough to listen to those who are in the frontline and that includes staff blowing whistles, residents or patients complaining,  and relatives of those in care who are concerned.  But Panorama has the power to name and shame those who pretend to care.

‘National Minimum Standards’ – ‘Essential Standards’ – ‘Regulatory body’ – all meaningless words.

How about a new standard: Guaranteed Quality Standard without which no care home will be allowed to operate, without which no manager will be allowed to manage, without which no nurse or support worker will be allowed to work.

Where are the Required Standards?  Required standards of training for all support workers before being let loose to work in care?  Required standards of supervision of all staff?  Required standards of regulation?  Required standards of career progression for all care workers?  Required standards of respect for all care workers who provide good standards of care?

One of our esteemed (not always) MPs – was it Iain Duncan Smith? – suggested that  unemployed people in receipt of benefits should be forced to work in the community in places like care homes.  Well, my message back would be that you show no respect for the world of care, no respect for staff who might be good support workers if given support themselves, and no respect for the people in need of care.  Because you could end up with utter chaos – but, I am presuming that all the staff working at Winterbourne View were carefully selected, CRB checked, trained and supervised, especially the most senior thug of them all.

And all this on the day that Southern Cross is in desperate trouble, with the begging bowl out now, all because Southern Cross failed to get its priorities right.  It failed to remember that it’s there to provide care.  If Lansley and Burstow and our Demolition Government don’t care enough to care, they should be ashamed of themslves.

How about begging for guaranteeed standards of decent care for those in need of care?  But we shouldn’t need to beg for that, should we.   It should be a basic provision made available by a civilised country.  If we really care.

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CQC’s dynamic system of regulation

When I saw Mark Easton’s report on BBC News at Six yesterday about the changes in the way care homes in England are to be inspected, it made me wonder – yes, yet again! – whether the world has gone completely off course, heading for a major collision.

Then I read Mark Easton’s blog ‘Care and the Community’ and the words used by CQC have thrown me completely.

We rely on people who use services and those who care for and treat them to tell us about the quality and safety of services. This feedback is a vital part of our dynamic system of regulation which places the views, experiences, health and wellbeing of people who use services at its centre.

Dynamic system of regulation?  Dynamic?

Dynamism presupposes energy and effective action –   not exactly characteristics for which the CQC has ever been renowned.  Lethargic might be a more appropriate adjective to describe the CQC.

The CQC and its predecessor CSCI have been short of a dynamo – or even more than one – for  years, and there’s not much chance of new-found energy coming via a system of informal regulation which will rely on the already depleted energies of older vulnerable care home residents and their relatives.  It’s unfair to place such a burden on their shoulders.  But it will make it easier for care providers to cough out the old chestnut “well, nobody else has complained”.

Care Services Minister Paul Burstow said in Mark Easton’s report “…. we’re determined to actually make sure responsibility sits where it should be, with the commissioners, with local authorities and with the providers”.   Burstow almost implies that those commissioners, local authorities and care providers never had any responsibility in the past to ensure quality care in care homes.  So what were they commissioning, authorising and providing?  Crap Quality Care in the UK?

Anyone who has ever tried to shake awake either CSCI or CQC and to try to get some kind of dynamic action from them will be in a state of severe shock now.  It has never been possible in the past to get anything that resembles ‘concern’ from CSCI/CQC, so I have little optimism for the future.

Especially as the cuts currently being forced through in local authorities up and down the land will make dynamic localism an empty promise.

But if the plans to abolish councils’ legal duties to provide social care come to fruition, there will be no care homes.  There will be no care.  Social care will be gone into the hands of the private providers, available only to those who can afford to pay the charges of those private providers.  I wonder what it will be called if it becomes a discretionary rather than obligatory provision of care.    Local care?  Discretionary local care?  Survival of the fittest via neglect of the needy?

Is that a civilised way to support vulnerable adults in need of care?  It wouldn’t be allowed if it were cats and dogs we were talking about, so it should not be considered good enough for older people.

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Johann Hari’s plan to solve our care home crisis

Johann Hari, journalist and columnist at The Independent, has come up with a 10-point  manifesto to transform the shabby system of care of the elderly in place at present.

Very recently, he wrote an extremely moving account of the last ten years of his grandmother’s life in care, as she suffered atrocious treatment in various care homes.  His article – My grandmother deserved a better ending than this – was apparently the catalyst for the tsunami of emails he received from relatives of people in care homes and from care workers, all sharing their own experiences.

Today Hari cries out again in The Independent, with a list of proposals that some people may think are unnecessary, judging by some of the fatuous comments on his previous article.  But sadly, some of us know only too well how essential this manifesto is – and how long we have been waiting for it.

I do so hope that he will attract more attention than those of us who have been pleading for years now, begging the ‘authorities’ to take positive action to improve the care system.  But our cries were bootless.

Please listen, world, please listen now.  Trust us, believe us, listen to us, hear what we have to say and improve the system once and for all.

It’s not necessary for me to comment on the ten ‘Acts’ of Johann Hari’s plan.   But I applaud each and every one of them.  If I could add just one further point to your plan, Johann, it would be one single acronym for the care system to acknowledge and to live by:

HOT as in HONEST OPEN TRUTHFUL

Be honest – be open – be truthful. Because so far, our so-called care system has been far from HOT.  It has been frozen into inactivity.  Heartless, uncaring, and deaf.

I’ve tried to do my bit to improve some of the Acts too, as have so many people before and since.  I failed miserably in part, because the might of the local authority is great.  As is the might of the mental health care of older people team, able to engage and pay for massive amounts of legal advice when I challenged the shoddy standards of that particular mental health care of older people team, and their ‘convenient’ interpretation, use and abuse of the Mental Capacity Act.  (I’m still working on ‘others’ involved.)

That legal advice was all paid for from the public purse, of course.  The tax payer and the Council tax payer paid the price of that.  All to preserve the dignity and reputation of the local authority, the care home provider, the CQC/CSCI, and the reputation of all the other weasels involved.

My relative paid the ultimate price.

I would have preferred the ‘authorities’ to have spent that money on care, rather than on legal advice to protect their puffed-up selves – and to protect the puffed-up care provider.

Where were you then, Paul Burstow?  Neither you nor your predecessor was willing to listen then.  You are all there when it comes to talking about money and funding, but you’re strangely absent when it comes to the discussion of care standards and quality of care.

The CQC/CSCI is blind, deaf and toothless.

The policy in place to protect vulnerable adults from abuse carried the name ‘No secrets’ – but secrets is precisely what the authorities operate, preserve and protect.  In their own best interests – but not in the best interests of the vulnerable adults.

We should be ashamed that such a manifesto is necessary – but it is absolutely essential.  We are supposed to be civilised – but we are not.

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The ordeals of care in the UK

After I blogged my letter to Santa, the festive holiday season came and went and I thought I’d try to calm down a little this year, and take things more gently.  Things were going well – and then, I listened to Radio 4’s Face the Facts on the exploitation of immigrant workers in the care sector in the UK.  An excellent programme presented by John Waite.

The workers are exploited by the dubious agencies and unregulated gangmasters who hire them, rip them off before they even arrive here, and provide their services to the care industry, where they work with many vulnerable older people in need of good quality care.  They are treated like slaves, have no complaints procedures to help them, have to put up with and shut up about that exploitation as they go about their work.

It sounds so very similar to the way in which the ‘care industry’ in this rich, so-called civilised country of ours, treats vulnerable older residents in care.   Those residents are treated badly too, with no complaints procedures to change the standards of care.  They too have to put up with and shut up about sub-standard care, because of similar fears to those voiced in the Face the Facts programme by some of the workers interviewed.

The care industry is allowed to exploit staff, by paying below minimum wage, with no contract of employment, no security, no job prospects, no training, no future, force them to work 50-60 hours a week, force them to work for four months without even one day off ….  How on earth can care workers working under those conditions provide good quality care?  It is impossible.

Nobody cares enough to make a difference.  To make it different.  To  change things for the better – once and for all and for always.

This weekend was supposed to be a peaceful, gentle, averagely average weekend.  But yesterday, I read Johann Hari’s article in the Independent about his experience of residential care during the 10 years he struggled to find decent care for his Grandmother.

Today’s Independent follows up with the news that Paul Burstow, Care Services Minister, has condemned the ordeal of Johann Hari’s Grandmother as ‘appalling’.  He now promises ‘new checks on elderly care’, says that the Care Quality Commission (CQC) has been given extra powers to crack down on poorly-run homes, and that he’s determined to tackle concerns over the use of antipsychotic drugs.  I respect Johann Hari, and I have no wish to add to his personal struggles.  But, my question to Paul Burstow would be: have you not been made aware of the far worse ordeals that some people have to go through in residential care homes?  Why has it taken you so long to comment?  Or is it just that most of us don’t get our stories published in the press?  We struggle on, trying to improve things – but nobody listens to us.

Burstow urged people with complaints about the treatment of relatives to ‘come forward’.

We have been doing that for years, Paul Burstow, but nobody has been willing to listen.  There is a limit to the number of doors we can all bang on, shouting ourselves hoarse, if nobody listens and acts once and for all.

Yes, I am feeling very angry at present – and that’s nothing unusual when it comes to thinking about the lack of care we allow to be provided to our older people.

In the Face the Facts programme, Martin Green  (Chief Executive of the English Community Care Association) representing 5000 care providers could scarcely bring himself to use the word ‘residents’ – he could only refer to care home residents as ‘they’.  According to Green, he justified the ‘expensive business’ and cost of residential care by explaining that ‘they’ get accommodation, ‘they’ get food, ‘they’ get specialist support, ‘they’ get a lot of activities.   Martin Green needs to visit a few care homes pronto!

In April 2009 Ed Davey Lib Dem MP was of the opinion that the Gangmasters Licensing Authority (GLA) remit should be extended to cover vulnerable care workers too and he even signed an Early Day Motion (EDM1366) along with 93 other MPs.  But now that he’s Minister for Employment Relations in the ConDemOlition, he’s changed his mind.

His Statement to Face the Facts: There are no current plans to extend the remit of the GLA and we certainly do not need more licensing to be introduced into sectors such as the care industry. The government has no intention of burdening the majority of companies who run a reputable business with an expensive licensing scheme. Transcript of the Face the Facts programme is available here.

Frank Ursell, chief executive officer of the Registered Nursing Home Association, has apparently warned that homes – which rely on council funding for around two-thirds of their income – could be forced to cut spending on staffing, food or activities because of the cash squeeze facing the sector. He said “People talk about quality but then they pay peanuts. What is it exactly that they expect?”

Is £1000 per week for dementia care in a care home ‘peanuts’?  No, I don’t think so, Frank Ursell.  It’s a fortune.   It represents the savings built up over a lifetime of hard graft by many of the older people in residential care.  I know what I’d like to do with some nuts, including yours Mr Ursell!

Frank Ursell represents the interests of care home owners; Martin Green represents the interests of small, medium and large care providers.  Now, remind me, please someone – who is it that represents the interests of older people in residential care?  How often are their interests paramount in the thinking of the care industry?

A while ago, a report was issued detailing the ‘average amount of contact time’ any resident of a care home could expect to meet.  I can’t find that report now, so I won’t quote a figure, but it was a pathetically low number of minutes per day.  (If anyone can point me in the direction of that Report, I’d be grateful.)

As for staffing levels: There are no legal standards that we can refer to – staffing levels are supposed to be adjusted to match and to meet the needs of the residents in care.  Note the words: ‘supposed to be adjusted’ – the reality is very different, and a skeleton staff is the norm.

As for activities: virtually non-existent in the majority of care homes.  Hence the TV is always on and blaring, even though the residents may not be watching or even wanting to watch day in, day out.

As for Paul Burstow, please show that you care.  Convert your hollow words into meaningful action.  The residents of care homes don’t have time to wait for you all to deliberate, to make promises that never come to fruition, to waffle on endlessly about how appalled you are.

Decisive action is required.  Immediately.  Actions speak louder than words, after all.

That will be the only way we will ever believe that you care.

The weekend begins now.

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Anti-psychotics and vulnerable elderly people in care

This week’s BBC Panorama programme What Have The Drugs Done To Dad? has caused more questions than it answered for me, in some  ways, and it’s left me with a feeling that we really could do better, if we cared.

The programme began with the statistic that 180,000 people with dementia are being given – as a matter of routine – powerful anti-psychotic drugs which in the majority of cases harm them and may be shortening their lives.  It was described as the scandalous abuse of some of the most vulnerable people in our society.

I must add a qualification here: some people are content that their relative with dementia is being prescribed anti-psychotics, both in residential care and in their own home.  It is not my purpose to deny them the right for that to be seen as appropriate in their own circumstances.  But the programme’s purpose was to look at the inappropriate over-medication of people in care, and the over-prescribing of anti-psychotic meds that were never designed or legally licensed for dementia.

Paul Burstow, Minister for Care Services, used the words ‘shocking’, and ‘unacceptable’, stating that these drugs kill people, cutting their lives short once they have already reduced the quality of their lives.  I have no reason to doubt Professor Sube Banerjee’s assertion that the drugs are being used much too often and much too freely.  If their use is beneficial in only one-fifth of cases, it’s serious cause for concern.

I have no personal family experience of the use of such powerful anti-psychotics for people with dementia, but I do have personal family experience of powerful drugs being prescribed for my own relative with dementia, and with a few other physical problems that were causing pain and distress.

Like Cheryl Byrne and Glynne Thompson who appeared in the Panorama programme, I too noticed a dramatic decline in the general well-being of my relative – even though I had no idea then what had been prescribed.  Within a matter of weeks, all conversation stopped; there was a huge change in awareness and sociability; posture went from upright to stooped; the ability to engage with anything at all was non-existent; agitation; insomnia; disinhibited behaviour; and the remains of what once was a definite joie de vivre went right out of the window.

My request, in the mental health assessment unit, to be allowed to know which medications my own relative was being given, was met with verbal abuse by the deputy in charge of the ward. No matter how much I explained that I was shocked to see such a huge decline in such a very short space of time, the brick wall of refusal came my way.  She refused to give me any information at all, even though I was listed as one of only two close relatives still alive and caring about a very vulnerable elderly person with dementia.

It was only after the death of my relative that I discovered – when I obtained a copy of the medical  records – that a doctor had written into those notes “this is a massive amount of NSAIDs and anti-depressants for a frail elderly person”.  They had prescribed  an opioid drug to control the pain and the patient.  Then, the anti-depressant was introduced to someone who had no history of depression at all – it was prescribed as a way of controlling the manifestation of ever increasing physical pain, discomfort and distress.   It made it easier for the staff in the mental health unit to manage – they could then manage to huddle round and watch TV, rather than needing to interact with their patients.

Neither the opioid drug nor the anti-depressant controlled the pain.  Did they control the patient sufficiently in the best interests of the nursing/care staff?  Did they contribute to a sudden death?

After watching Panorama, I looked around for more information about the use of anti-psychotics to control, to quieten, to make manageable those vulnerable elderly people with dementia and living in care homes.  What did I find?  This from the Alzheimer’s Society dated 3 December 2007, which was when Panorama last looked at the abuse of elderly people in residential care homes by over-medicating them.

Neil Hunt, then Chief Executive of the Alzheimer’s Society, said:

Today is D-Day for dangerous drug prescribing.  Sedating a person with dementia should be a last resort but too often doctors are turning to the medicine cabinet without considering the alternatives.   Today Panorama is shining a light on the widespread drug abuse of people with dementia, which has been hidden away for too long.  The first parliamentary inquiry into the practice is also an important step to uncovering the true scale of the problem, and we look forward to its findings.

Over 100,000 people are being prescribed these drug treatments that leave people with dementia in a zombie like state, robbed of their quality of life.   Research shows that anti-psychotics have minimal benefit and drastically increase the risk of death and stroke. It is absurd that we are wasting millions of pounds prescribing these drugs when this money would be much better spent training health professionals in dementia care.

Dementia isn’t only about memory loss; more than half of all people with dementia experience behavioural symptoms as part of their condition.

But I can’t find a statement from the Alzheimer’s Society commenting on this more recent  Panorama programme.

Three years on from 2007, when the Alzheimer’s Society called for an end to the widespread drug abuse of people with dementia after the 2007 BBC Panorama programme, we are now promised that within another year, by November 2011, the use of anti-psychotics prescribed to people with dementia will be reduced by two thirds.

Why should it take so long?  How many more people will have died before action is taken?

And finally, for anyone with an interest in the shocking statistics of medication abuse of vulnerable elderly people in need of care, click here for a read of this document from 31 March 2008, which also bears the name of Paul Burstow, then in  Opposition  and MP for Sutton and Cheam:

Keep Taking the Medicine 4 The scandal of the inappropriate medication of older people in care

Had it appeared just one day later, it would have appeared on 1 April.

No excuse for lack of action is acceptable, said Paul Burstow in Opposition.  He’s been arguing his point since 2001, and probably before that.  He was lonely in the House of Commons then – nobody listened to him, championing in debate the cause of vulnerable elderly people.  Now that he’s in Government and Minister for Care Services, he says that he stands by that statement, it is now his mantra,  and he nodded when told that he would be held to account in the future.

Please widen the scope of your concern, Mr Burstow.  Look at the abusive over-medication of elderly people, especially those with dementia and in care, in its entirety.   In fact, widen the scope of your concern to the abuse of elderly people with dementia in care.  Full stop!

Nobody listens to us either, so you should know how we feel.

Let’s hope that you are not Home Alone now, and that people listen and act.

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Councils’ body says cuts threaten home care for elderly

“Virtually all” councils in England and Wales could be forced to end home help for elderly and disabled people, the Local Government Association has said, according to this report from  BBC News.

Care Services Minister Paul Burstow said it was “wrong to scare people”.

But shadow health minister John Healey said: “This shows you cannot make big budget cuts without big consequences.

But you can scare people, of course, if you are a Big Budget Cutter who can’t see the Big Consequences for the Big Society that hasn’t yet been created.

Perhpas we would be better off with ‘virtual councils’.

Otherwise  “virtually all” elderly and disabled people who depend on home care from their councils will be “virtually  neglected”.

Sad world we now inhabit.

I’m not feeling positively optimistic  about the future of care for  elderly and disabled people.

In fact, I’m virtually pessimistic about it all.

Forward to a real future we could all care about.  Not back to a past we thought we’d virtually and really left behind.

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Intermittent connections in the world of dementia and care

There is what is known as a ‘major Service Outage’ in my part of the UK, and many of us are struggling with creepingly slow broadband connections – all are up the creek without a paddle for the foreseeable future, and no amount of troubleshooting has so far been able to sort us all out.  I’m told I have an intermittent connection, but no boffin has so far been able to create the constant connection that I need.  And as those strangely disconnected moments turned into hours, then days and now weeks, we have all been driven to distraction.  So, many micro filters have been changed, routers powered down and powered up, settings have all been checked, lines tested … and so on.  The systems have all had a thorough MOT.

But the brain behind the broadband can’t send the right signals to the right place at the right time for a meaningful, reliable and constant connection to be established.

Just like dementia.

When the brain’s working properly all those little electrical impulses work their way along the nerves to and from parts of your body and parts of your brain.  The neurotransmitters help those signals to jump across the gaps between the nerve cells.  And language, movement, problem solving and memory all work according to plan, according to the blueprint.  The connections remain constant.

But, with Alzheimer’s disease, the brain shrinks as the number of nerve cells in the brain reduces.  You can’t grow new nerve cells, so as more and more cells die away, the problems of dementia increase.  The neurotransmitters are reduced too so they can’t send the same signals.  The intermittent connections begin to surface.

The brain needs a good supply of blood – via blood vessels – for it to function, but if the vascular system in the brain becomes damaged, because of diabetes, high blood pressure or heart problems perhaps, or a stroke, the blood can’t reach the brain cells, so they eventually die.  And then along comes Vascular Dementia to wreak havoc.  More intermittent connections surface.

It’s 100 years since Alois Alzheimer first described Alzheimer’s.  Very little of Alzheimer’s teachings had to be revised and, though 100 years older today, they have not been corrected or amended but only confirmed.  Alois Alzheimer was apparently an optimist.

Dementia is the word we use to describe the symptoms that occur when the brain is damaged by disease, the most common being Alzheimer’s Disease.  Vascular Dementia is the second most common form of dementia.

Dementia is degenerative, and the speed of decline varies. A person will become repetitive both in speech and movement, will look in a mirror and fail to recognise their own image, will also fail to recognise their own family and friends, will lose the ability to carry out everyday tasks (the so-called activities of daily living or ADLs), will often become verbally and/or physically aggressive, will become agitated, may suffer hallucinations and delusions, will gradually suffer severe memory loss, will often lose their speech entirely and in the latter stages they will lose the ability to swallow, the ability to move, the ability to breathe.

Dementia leads to death.  There is no cure.

For some unexplained reason, Dementia is  seen at present as a problem requiring social care rather than health care.  And that is where the intermittent connections in the world of dementia and care really begin to show themselves.

Paul Burstow, Care Services Minister and Liberal Democrat MP, had a crack at local authorities for jumping the gun and making cuts in care support ahead of next month’s public spending review.  He also told Community Care that “Every local authority has a responsibility to do its best to make efficiencies and protect the frontline – there are better ways they can do this than salami-slicing and slash and burn.”    I can only agree with him when it comes to salami-slicing – if only because I can think of a few salamis that I’d like to slice, all currently involved in the care industry and in the dementia care industry.

Mr Burstow is also upset by the low uptake of personal budgets.

The Princess Royal Trust for Carers published the results of its survey of 800 carers, who care unpaid for a sick and disabled family member, and found that over half (53%) of all carers who work earn less than £10,000 a year, with three-fifths (60%) having to spend all of their savings to support the person they care for. 89% say that they are financially worse off as a result of caring and, consequently, almost two-fifths (39%) fear they will lose their home.  Broke and broken: Carers battle poverty and depression.

Read these Quotes from Carers – the intermittent connections in the world of care are clear to see.

Today, Stephen Dorrell – the new Chairman of the House of Commons health committee – has urged politicians to face up to the way in which vulnerable elderly people are being forced to pay for medical care, health care, all because of the redrawing of the boundaries between health care and social care, without proper debate or scrutiny.

The debate surrounding NHS Continuing Healthcare – which is healthcare fully funded by the NHS, in any ‘setting’ so in hospital, in a care home, in one’s own home, in a caravan or even on a double-decker bus (privately owned, of course!) – is something that most people never need to come into close contact with, unless and until they or their relatives are old, and/or with health needs.  And especially, unless and until they develop dementia.  Then, for some strange reason, the connections of the professionals suddenly resemble our broadband problems: fully funded, but fully intermittent.

Many people are denied the human right to return from hospital to their home, by healthcare professionals and by social services.  They’re told they need ‘nursing care’ 24/7 in a care home.  They are then offered by the NHS £100 towards the cost of that nursing care, the Nursing Care Contribution.  But they are then also forced to pay £3500 per month or more for residential care, often shabby and sordid residential care.

All because they have health needs that are such that they can no longer live an independent life.  Residential care is the choice of last resort for so many people, because they can no longer be cared for at home.  And that applies especially to those with dementia.

They are often forced to sell their own homes – or rather their family is forced to sell the home, because by this time, the person needing 24/7 care is in no position to do so themselves – to pay the extraordinary costs of residential care.  Extraordinary costs, because nobody is ever given a breakdown of that cost, but it’s not normally a fair charge.  The quality of care provided is rubbish in many care homes, with enormously inflated charges, enormously inflated pre-admission promises of care, enormously low-paid workers, mostly immigrant workers, enormously low standards of training, especially dementia training.  But enormous profits for the care home industry.  (see the CQC announcement today today about some of the sordid care homes and agencies it has forced to close.  Many  other sordid care homes and agencies have survived the CQC axe – but only just, and only thanks to some very closely woven and constant connections.  There’s little chance of their connections becoming intermittent.)

The hoops and hurdles that have to be faced by those who challenge the decision-making process (also known as the National Framework for NHS Continuing Healthcare) are so complex and complicated that the so-called professionals can’t even work their way through them all.  And then the family members who find the inner strength to challenge it all are forced to spend years, and years and years being humiliated by the Primary Care Trust (PCT) and Social Services (SS).  It comes to resemble a game without rules, like Snakes & Ladders with venom-filled snakes hissing and spitting at the poor souls who try to climb the rungless ladders.

Except that there are rules.  There are legally binding rules that should not be broken.  But they are being wilfully broken, by the NHS, the PCTs, and the SS.  Aided and abetted by governments, one after the other.  They are all in it together, to paraphrase David Cameron.

“We are clear about what we must do … in a way that protects the poorest and the most vulnerable in our society, in a way that unites our country rather than divides it, and in a way that demonstrates that we are all in this together. Prime Minister David Cameron’s speech on the economy, Milton Keynes, 7 June 2010,

Dementia is an extraordinary disorder of the brain, a disease of the brain, a most devastating illness, for which there is no cure.  People die of and with dementia.  But dementia is not being acknowledged as a disease, an illness, a destructive force, removing from a previously capable and competent human being each and every single quality that defines a human being.

We as a civilised country ought by now to have found a way to create the constant, reliable connection between needs and service provision.  Dementia care still suffers from a ‘major service outage’ of a kind that paralyses those with dementia and their family members caring for and about them.

I am sick and tired of reading, hearing and watching our government, our ministers, our politicians, our healthcare professionals, our social care professionals and so on, all cry out in shock horror about the problems of caring for the elderly that we are facing, but they continue to do nothing to correct the ills of their ill-defined system.  Actions speak louder than words.  If we really are all in this together, then we should not be so lily-livered about sharing the responsibility for it together, via taxation.   All that is required is for the connection to be made, between health needs and care.  Between dementia and care.

After all, tomorrow it could be any one of us – even you – with dementia and needing care.

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From foster care of children to care of vulnerable elderly people – we care!

A news item from Communitycare.co.uk caught my eye the other day.  ‘Name the bureaucrats who hamper fostering, says minister’ – the minister being Tim Loughton, Children’s Minister at the Dept of Education, who has called on foster carers to tell him which councils are “excessively bureaucratic” when it comes to allowing them to make day-to-day decisions for the children they foster.

Loughton says he plans to demolish some of the ‘myths’, as he sees them, surrounding fostering.  A laudable approach, even though those myths are more fact than fiction according to foster carers.  Even more laudable if he really does manage the ‘cultural change’ that Jackie Sanders, communication manager for the Fostering Network, called for.

I’ve just watched the Tonight programme, and learned a lot about the hurdles that potential foster carers are required to go through, via the fostering panel.  The ‘vetting process’ includes an intensive investigation and examination of a potential foster carer’s early life experience, their family history, their suitable training, CRB checks of themselves and any other family members who may come into close contact with a fostered child, assessments of the suitability and safety of their home, their financial situation; references are all thoroughly checked, medical and mental health checks carried out, schools contacted for information, plus social worker interviews and visits.  To name but a few.  I would not for one moment criticise the need for each and every one of those safeguards.  Where vulnerable children are concerned, they certainly deserve the quality care that may only be ensured by such a volume of ‘risk assessments’.

Gradually, I found myself seeing not the young, vulnerable children featured in the programme, but elderly vulnerable adults living in residential care homes.  I began to wonder  whether  a similar cultural change is perhaps something we should be demanding of Tim Loughton’s counterpart.  Not in the Department of Education, but in the Department of …. ….

Where’s your equivalent, Tim Loughton?  Where is the Older Person’s Minister?  Who is he or she?  And has s/he made him/herself known to us all?  Paul Burstow’s the Minister for Care, but that encompasses old, young and in-betweeners.  So perhaps you’re our man, Mr Burstow.

I challenge you now to provide the same safeguards for all elderly people in care: a vigorous and rigorous vetting process for all care providers and all paid caregivers, encompassing their past history and regardless of the 30 year contracts they may have been handed.  A full and detailed assessment of the suitability and training of all those taking charge of our older persons.

Make that full and detailed assessment available in the public domain for anyone to access – that really would show the loopholes in the current system!   The CQC– and its predecessor the CSCI – failed to provide the safeguards that should surround each and every residential care home for vulnerable elderly people.  The standards of supervision, training, and care for and of vulnerable elderly people are all too often abysmal.

But who cares?

We care.

We really do care.

The person in need of care cares.

The family and friends of those in need of care care.

The family and friends of those in residential care homes care.

But who cares enough to listen to us?

Who cares enough to care about the shabby standards of care that are being allowed to continue?

Who cares about the elderly vulnerable people of this rich country of ours?

One of the young people in the programme, Anita Johnston, said she realised that ‘something needed to change’ in her life in order to make it a life worth living – “so I did”, she said.  She changed.  She managed that change in herself, with the help of her wonderful and caring foster parents.  “Without them, I wouldn’t have a hope”, she said.

Without a similar change in those involved in the care of our vulnerable elderly people, we don’t have a hope either.

Anita Johnston, I wish you a happy and successful future.  With your caring attitude, with the respect you manage to show, with your wisdom you must have a great future ahead of you.  Would you like to become Minister for Older People?  You’d do a grand job!!

You could then demolish some of the ‘real myths’ that surround care for older people.  All is not what it should be there – so your refreshing caring presence would be more than welcome.

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PS. to Tim Loughton – your website biography needs a rapid update!  Or do you still see yourself as a Shadow?

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