Tag Archives: Winterbourne View

Alzheimer’s Society and the Horse fraternity

Over recent months or even years, many people have become irritated, bemused, frustrated, confused and perplexed by the Alzheimer’s Society’s online chat room also known as Talking Point.  Posts have been dumbed down and members dumbfounded by many of the decisions made by the appointed representatives of the Alzheimer’s Society, working and operating its online forum.

Many people were hoping that things had changed, once the Alzheimer’s Society had rid itself of what it perceived to be irritating members who were brave enough to challenge the Administrative nonsense going on.  Similar to the way that Julie  Bailey and ‘Cure the NHS’ have challenged the brick walls of care, resulting at long last in the Francis Report.

It is so easy for the Alz Soc to ban forum members who challenged the ignorant actions of its Administrators and Moderators.  The Alz Soc compromised many members by editing and/or deleting their posts, even if they only referred to Winterbourne View, or … wait for it …. the British Geriatric Society, or even Peter Carter of the RCN.  All mentions were obliterated without being able to be questioned by the members.   Members who posted about BSE or CJD and dementia-linked situations were also deleted and obliterated.

It was all too uncomfortable for the Alzheimer’s Society to contemplate such matters.

It is far too comfortable for the Alzheimer’s Society to silence those members who had the guts to challenge matters.

It makes  me wonder how the Alz Soc will react if/when the latest horse-meat scandal comes to evidence a connection between dementia and the introduction into the human food supply of a drug called Phenylbutazone – a drug that is now only used in the care of horses but which was  previously used in the care of human beings who also happened to have arthritic/rheumatic joint problems.  The experimental use of Phenylbutazone in humans was disastrous and resulted in death, and it also resulted in Phenylbutazone being banned for use in human beings suffering from arthritis/rheumatism.  That was circa 1975, so it’s possible that any use of Phenylbutazone now in human beings is heavily restricted, controlled and monitored.  I hope so.

The Alz Soc shed the skin of those that it felt irritated by, namely those who posted examples of sub-standard care.  All mention of Winterbourne View was eradicated from the forum, as were posts mentioning Southern Cross, to name but a few.

Almost overnight, it became acceptable for people to name Stafford Hospital, to call social services ‘social circuses’, to talk of ‘lies and more lies’ when referring to social care systems that the posters had come by.  Even mention of MPs was suddenly allowed, whereas previous posts mentioning similar had been edited and/or deleted.  So members were thinking that things may be changing and on the up.

The forum Administrators and Moderators prod and poke and provoke.  Until such time as the Alzheimers’s Society’s appointed Administrators and Moderators can ban thinking members.  It’s so much more comfortable for the Alz Soc to leave its own comfort zone untouched and unsullied by those Members of the Alz Soc who would like questions to be answered.

The latest example goes beyond the acceptable when it comes to caring about dementia.  [I choose not to use the word Alzheimer’s because it denies recognition of all other forms of dementia.  It also sweeps away most of the important factor that people living in the UK care about at present.]

It is all swept away by someone who has no idea what it means to be trying to achieve quality care in the UK.

Here, the Alzheimer’s Society’s online Talking Point forum:

“While this may be your view, that’s all it is – your view. Some care homes may be like this, some are not. To state that all of anything is untrustworthy is inappropriate in my view.”

Is that the view of the Alzheimer’s Society?  Is it the view of an appointed Alzheimer’s Society person?  Is that the point of view of someone who has not one single clue about what it means to be living in the UK with dementia and caring about those who are living in the UK with dementia, let alone those who are living in the UK and still dealing with the care home system that is so sadly lacking in quality and standards of care.

It is the point of view of someone – an online forum Moderator,  appointed by the Alzheimer’s Society –  who has never had any direct experience of the care home system in the UK, who has never had any experience of social services in the UK, who has never had any dealings with that which most people are dealing with when it comes to care in the UK.

But someone who  is still given full reign to spout about that which affects every single person living in the UK.

A virtual Queen of the World.

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Filed under abuse, accountability, dementia

The Madness of Alzheimer’s Society

This being the season of goodwill, my goodwill message to the Alzheimer’s Society is that it should open a dictionary and learn the meaning of the words ‘support’ and ‘discussion’.  Some of us dealing with dementia in our relatives and friends wonder why nothing changes for the better where dementia is concerned; why progress is so slow; why so many people have to tread the same stony path that others have trodden.  The answer may lie in the Alzheimer’s Society’s online forum.

The AS’s  online forum Talking Point claims to be “an online support and discussion forum, for anyone affected by dementia. It’s a place to ask for advice, share information, join in discussions and feel supported.”

The AS has destroyed the true meaning of those words.   With its dictatorial monitoring, editing and censorship of posts, the AS only allows words to be used if  they match those chosen by the AS.  Anything that doesn’t conform to the AS’s desired point of view is amended, edited or deleted by the AS.  Without discussion.

The Alzheimer’s Society condones strange practices within the administration and moderation of its forum.  It allows the banning and removal of people affected by dementia who have been members of the forum for many years now.  At the start of this year, one much respected member (since March 2006) who had posted almost 5,500 times on the forum has been deleted.  She’d been a member for longer than some of the moderators who have now condoned her removal.  She had been extremely supportive of others, providing much care and help, much respected by other members too.  But zapped by the AS, suddenly.  Without warning.

The reason given?  It was deemed by the AS that she was not posting as the AS wished her to post.  No discussion; no appeal; just zapped.  The Alzheimer’s Society’s word is final.

The AS condoned the removal of words like ‘Winterbourne View’ from every single part of the forum.  The reason given?  It does not allow mention of care providers by name.  The strange AS Administrator who carried out that action failed even to take on board the fact that Winterbourne View is no longer; it is no longer a provider of anything.  It no longer exists. (It’s difficult to argue that Winterbourne View ever was a ‘care’ provider, but that’s another debate.)  The salaried AS employees spent time searching for and deleting all mention.  Same applies to Southern Cross – all mention of that has been deleted too.  Even though Southern Cross no longer exists, and is not a care provider.

Rules is rules.  Common sense has gone out of the window, as far as the Alzheimer’s Society is concerned.  Censorship rules.

The AS condones the editing of posts by its moderators and administrators, even months after they’ve been posted.  It makes one wonder how many other posts have been doctored to suit the AS, without discussion with the original poster, and without appeal to reason.

It is censorship gone mad.  What is the AS so afraid of, that it needs to do this to people who are trying to change the world of dementia care?

One forum member posted recently that they’d only just read the Terms and Conditions for the first time – something referred to constantly whenever a moderator wants to spank a naughty member.  The Terms and Conditions were described, by this member, as ‘draconian’.  They certainly are just that.  The ‘infraction’ system is also draconian and childish, in the extreme.

The membership is not allowed to voice any objection, on the forum, to their post having been edited and/or deleted – or they receive a ‘yellow card’ for doing so.  Then another.  Then a ‘red card’ ….. and so it wends its childish way along the path to destruction of anyone who questions.

The members are required to contact the mods or admins by PM to ask for explanation.  However, often no explanation is given.  The member is then zapped before they can blink.  Their account is deleted, just like their posts may have been.  There is to be no discussion.  The AS word is final.  Unexplained but final.

A member is not allowed to delete their own account.  The figures of true membership would then be very different, but it suits the AS to make it seem as if it has more support for its forum than it has.  In reality, just a handful of regular members use what has now become a chat room.

The same rules don’t apply to the AS chosen moderators though.  They are allowed to post whatever they choose.  No matter how arrogantly rude they may be.   Some are worse than others, especially those that come out after dark.  One AS chosen moderator even posted the precise location where one member lives, with a barb attached to her post, of course.  That surely should have received a ‘red card’ followed by deletion of her membership too.  But no.  She can do whatever she chooses to do, even though the AS knows that she is provoking, inciting, stirring ill-will and uncomfortable feelings all round.

The moderators are immoderate enough to allow certain unfair comments to be made against a member – but only if it suits the moderators’ position, for whatever reason.  They have their favourites who can do no wrong, in their eyes.  They have their chosen victims who can do no right, in their eyes.

If the Alzheimer’s Society wants people affected by dementia to be able to share their experience of dementia in a free society, it must allow people to speak freely.  The moderators should be moderate, and should moderate sensibly, rationally and elegantly.  And with dignity and with compassion.  The current watchwords of dementia.  They should not feel the need to read every single post as it is posted, and then to alter it just to suit themselves.  They should not feel the need to amass a fan club amongst the membership, who are required to express their thanks to the moderators for ‘keeping us safe’.

The Alzheimer’s Society is destroying support for dementia, for its forum and for the Alzheimer’s Society.

The Alzheimer’s Society is consenting to the creation of a whole new generation of Stepford Wives.

Seasonal Greetings to those affected by dementia.  A plea to the Alzheimer’s Society to support them and to allow genuine discussion of the good, the bad and the ugly.

 

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Filed under dementia care

The Alzheimer’s Society – Sick Joke?

In March 2011, I wrote here of Private Eye’s  disturbing piece about the way in which the Alzheimer’s Society had closed down 240 regional branch committees, merging them into large regional centres, and then apparently seizing control of all the funds in those branches, and also branch property.  (No. 1284; 18 March 2011 – 31 March 2011; page 30.)  The Alzheimer’s Society didn’t care enough to reply to Private Eye’ article Fund razing, as far as I can see.

The Alzheimer’s Society funds, operates and manages an “online support and discussion forum, for anyone affected by dementia. It’s a place to ask for advice, share information, join in discussions and feel supported.”  Allegedly.  The forum is currently sponsored by Santander, with Tesco somewhere in the background, plus a few other sources of funding.  Probably Bupa, and many other care providers.

There was quite some discussion here on the Alzheimer’s Society forum about the closure of local branch committees and seizing of funds from local branches.  168 postings in total, so a fairly lengthy thread on the forum, with many questions being asked but many soft-fudge replies being given by the Alzheimer’s Society.  Then, before you could blink, the thread was locked, closed to further comment, because long-serving and loyal members of Talking Point – the name given to the so-called ‘support and discussion forum’ – were not happy about the platitudes being dished out to them by the Alzheimer’s Society.  They were confused, upset, fed up and disgruntled.   Many of them no longer support the Alzheimer’s Society or post on Talking Point.

A few weeks later, Private Eye (No. 1289; 27 May – 9 June 2011; page 30) reported that even more volunteers were being driven away from the Charity, with new breakaway groups emerging.  One group apparently wrote to the Alzheimer’s Society complaining that it was “utterly unacceptable and unforgiveable to write in such disdainfully bureacratic terms to anyone, let alone a group of women who have given so much of their time, energy and devotion to the very society you represent”.  Alun Parry-Jones, a former Alzheimer’s Society committee member was the chair of that breakaway group.  He also said “the society should be ashamed of driving out ‘the expertise and dedication of this group of stalwarts’.”   That piece was published in Private Eye under the banner Voluntary redundancy.

Again, the Alzheimer’s Society didn’t care enough to comment.

Now, Private Eye features a piece on the £2.4m given to the Alzheimer’s Society to train one million ‘dementia friends’.  The Eye (No. 1328; 30 November – 12 December 2012; page 30) headlines its piece with the words Sick joke.  Ernie Thompson, who started the old Sunderland branch in 1987, said “That the Society is now being paid to find new volunteers as dementia friends looks to me like a sick joke.  It was what we had been doing for years – only to be summarily dismissed”.

I wonder whether the Alzheimer’s Society will care enough to comment on that one.

It appears that the Alzheimer’s Society neither supports nor wants freedom of thought and actions where dementia is concerned.  It only supports freedoms that the Alzheimer’s Society finds acceptable.  The Alzheimer’s Society is strangling its members.  There is now even an unbelievable attempt to control the way people write their posts on its Talking Point forum.  Posts are edited behind the scenes without prior discussion with the writer of the posts, and often leaving no visible trace of the reasons for editing; words are changed or removed from posts without discussion; mention of moderators’ actions is not allowed; people are gagged when they dare attempt genuine discussion.

Salaried employees of the Alzheimer’s Society are paid to delete all mention of tragedies such as Winterbourne View.  Every single mention of Winterbourne View has been edited out – and there were many.  The words “Winterbourne View” no longer appear on any post on that forum.  The disgust felt by reasonable people when the tragedy of Winterbourne View became known has been the catalyst for potentially huge improvements in the way care is provided to vulnerable people.  But it never happened, as far as the Alzheimer’s Society’s online support forum is concerned.  Terry Bryan would be more than upset, I fear, and rightly so.

Censorship has deleted Winterbourne View.  Alongside many other things deleted by the Alzheimer’s Society.

Is that another Sick joke on the part of the Alzheimer’s Society?

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Filed under abuse, care, dementia, dementia care

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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Filed under care, care homes, dementia care, neglect

…. Care home providers & their conveniently selective memory ….

There’s spin – and there’s spin.  There’s careful choice of words – and there’s very careful choice of words.  There’s spreading the message you want people to hear – and there’s spreading the message you know that others will repeat and spread for you.

This piece by Mike Parish, Chief Executive of Care UK, appeared on Care UK’s website on 1st June 2011, the day after transmission of the BBC Panorama programme ‘Undercover Care: The Abuse Exposed’ showing the torture of people living at Castlebeck’s long-stay hospital/assessment/treatment hospital Winterbourne View.   The day that Southern Cross was sinking further into the pits.  Parish expresses his disappointment and frustration “at the recent unfavourable media coverage of the care sector”.

The same article has appeared elsewhere  since then – spreading the message, just as Parish intended it to be spread.

Parish says “It’s undeniable that the news relating to Southern Cross’ financial difficulties and the disgraceful events at a Castlebeck home are deeply distressing.  However, these are not at all typical of care providers whether public, private or charitable, who generally provide outstanding quality of care.”  All care homes should always provide outstanding care – not just ‘generally’.

He goes on “We are entrusted wtih the ultimate responsibility of caring for vulnerable people ….”   It is indeed a matter of life and death.  Or does Parish mean the moral responsibility, for which of course there would need to be a sense of morality present in each and every employee of Care UK, including those workers being paid less-than-the-minimum-wage, not even a living wage by Care UK.  Are they also required to demonstrate their sense of moral responsibility?

“….. Investing in the skills of our staff and in our quality controls makes a difference to our customers and to our staff.”  It’s good to know that quality controls might be emerging in Care UK.

“…. Care UK’s quality ratings, as assessed independently by the Care Quality Commission, places it at the top end of the industry, with virtually all its services being rated good or excellent.”  I’m not sure why Mr Parish should show such pride in the CQC, right at the time when the CQC is desperately in trouble for many reasons.  Or perhaps it suits Mr Parish that the CQC can no longer be seen as fit for purpose, starved of staff and resources, abandoning inspections, and relying on the likes of Care UK to assess itself.

“….. We’ve maintained double digit annual growth rates for over two decades ….”  Great news – but only if Parish can put his hand on his heart and swear that he has never never never (triple negative!) cut corners to save a few (million) bob, on any aspect of care in any one of his care homes, starving the staff of the training and monitoring and even basic equipment (such as capillary blood glucose monitoring strips), let alone the knowledge of how to communicate effectively with the local GP.

“…. We can only achieve this by maintaining the quality of our care and thereby the trust and confidence of our service users ….”  See triple negative above!!

Parish has a very selective memory, or is it selective memory loss?  Has he chosen to forget another BBC Panorama programme from 9th April 2009 – Britain’s Homecare Scandal – where  “After thousands of complaints and over 900 missed calls Hertfordshire Council got rid of Care UK, just 10 months after they had been awarded the contract”.   Many other contracts have also been lost by Care UK.

Has he also pressed the delete button on events at Care UK’s Lennox House in Islington, July/August 2008, and earlier too,  the care home where the then-manager was suspended and allowed to resign after the bodies of two residents were left in their beds for days?  As reported here in the Daily Mail  –  other reports are also available, such as this one from the Islington Tribune.

Or even the fact that the same Lennox House – which opened as a brand new flagship care home in the summer of 2007 – was subject to enforcement action and a massive ‘action/improvement plan’ and not allowed to accept new residents until May 2009, thanks to that wonderfully independent CSCI.   That was nothing to do with the residents’ bodies being left in their beds for days. Things were always seen to have gone very wrong in December 2007, just months after Lennox House opened.    CSCI/CQC reports available on the CQC website:

  • here in particular pages 6-8, 30-32;
  • here  in particular pages 6, 8, 13-15, 26-27;
  • here in particular pages 7-8, 13-15, 25, 27-28

In other words,  Care UK’s Lennox House was not fit for purpose when it opened and received residents.   Had it been, it would not have taken two years for it to demonstrate that it “continues to improve”, as noted by the CQC inspectors, and for it to drag itself up from a rating of  ‘adequate’.

I’ve never been enamoured of the CSCI/CQC for personal reasons and because of my family’s experience of care home care.  Their inspection reports have always taken 3 or more months to appear, rendering them even more meaningless than the toothless tick-box exercise they appear to have always been.  As some of us have had to find out, the hard way, a care home can go from ‘flagship’ to ‘wreck’ in the blink of an eye, or even from good to bad to absolutely disgraceful, to use a word from Mr Parish’s comments above.  Not that the CSCI noticed – until it had no choice but to be aware.

Mike Parish may also have chosen to forget this very recent revelation dated 6 May 2011:  ‘An elderly woman from Worcester Park, was left in severe pain from injuries caused by care home negligence while staying at Appleby House, a care home operated by Care UK, a leading independent provider of health and social care services. The company has now paid the woman’s family compensation as she has since died.’  ….. ‘

Mrs Cunningham’s daughter Janice commented: “I think this incident highlights the casual way the elderly are treated in some residential care homes. I believe Epsom General Hospital shouldn’t have discharged my mother to such a poor home.

It is terrible my mother had to endure the pain of the pressure sores.  People need to be vigilant when it comes to the care a home is providing and not believe all you are told by the homes’ employees. It pays to investigate yourself.

The above is taken from the website of Russell Jones & Walker  the firm of solicitors who represented the very best interests of Josephine Cunningham and her daughter.

There’s no smoke without fire could be a message for Mike Parish to remember.

Today’s Today programme featured a good interview with Christopher Fisher, Chairman of Southern Cross.   It’s worth a listen to hear what John Humphry’s describes as ‘semantics’, and what I’ve called above ‘very careful choice of words’.   Fisher squirms, as to be expected, accepts his full share of responsibility, still defends his ‘business model’, but can’t bring himself to say sorry for his actions over recent years.  He claims to have improved the standards of care over recent years – well, he’s also got a very conveniently selective memory, bearing in  mind that almost 30 per cent of Southern Cross’s care homes have breached minimum standards and have been served ‘improvement notices’ by the CQC.  He says that there were ‘issues in dealing’ with those standards of care, claiming to have invested heavily to improve training and support to employees.  He talks of ‘people occupying beds’.  Those people are not just occupying beds – the care homes have become their only home, where they expect to be assisted to live life to the full.   They didn’t realise they were meant to be contributing to your profit margins, whether or not you chose to sell off care homes, lease them back, and then all sell off your shares to make big profits to the tune of £millions.

For goodness sake!  The mealy-mouthed words of a weasel.

Nobody can blame all of the above on ‘unfavourable media coverage’ – not even Mike Parish.

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Filed under care, care homes, Care UK, dementia care, personal responsibility, professional responsibility, whistleblower

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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