Social workers are revolting

Social workers are distraught about the portrayal of social work in Eastenders.  The storyline concerns young Lola, and her baby Lexi, who was removed from her mother’s care by a social worker.

1. Social workers outraged by EastEnders storyline about baby Lexi – more here
“The British Association of Social Workers (BASW) is engaged in a battle with the BBC over a storyline in EastEnders.

Last Friday, the TV soap featured a social worker removing a baby from a teenage mother, Lola, apparently without sufficient grounds to do so.

The BASW immediately condemned the plot. It accused BBC producers of being “too lazy and arrogant” to get their portrayal of the child protection process right.’

2. Fury over Eastenders’ ‘misleading’ social work storyline  – more here

‘An Eastenders plot line has sparked outrage among social workers who have criticised the BBC for misrepresenting their work and putting children at risk.’

I’m not quite sure how 5 minutes (approx)  in total of a fictional TV soap can be seen to be ‘putting children at risk’ but I’ll no doubt get the message eventually.

3. ‘Eastenders’ portrayal of social work left me in tears’  – more here
‘I am sure I am not the only one to feel aggrieved by last Friday’s Eastenders social work story line, not least because accurate procedures were not followed [when a character’s baby was taken away]. Was it police protection, section 20? Where was the immediate risk to the baby? As a social worker, I was in tears, as was a colleague of mine, watching how our profession was portrayed on television.

As a result, I sent a complaint to the BBC ….’

Stick with me – it gets worse.

4. The British Association of Social Workers: – more here
Eastenders demonising social workers – BASW leads fight back
‘BASW has sprung to the defence of the social work profession after being inundated by complaints from members about an EastEnders storyline involving care leaver Lola Pearce having her baby removed by an oppressive social worker Trish Barnes, played by Tessa Churchard.’
‘Commenting on the portrayal Bridget Robb, acting chief executive British Association of Social Workers said: “It is disgraceful to see a publicly funded broadcaster deliberately spreading misinformation about the child protection process because it is too lazy and arrogant to get it right. We regularly give advice to programmes about social work storylines; we would like to know who advised EastEnders so badly.” ‘

Having just watched the episode in question, I wish the social workers in my life had been as harmless as the Eastenders’ social worker character, but more importantly as ‘kind and caring’ as the BASW seems to think they all are in real life.

Eastenders is a soap. It is fiction! Remember,  nobody is suggesting that social workers are all ‘lazy and arrogant’ on occasion/sometimes/frequently/often, are they?  Yet, the BBC scriptwriters are lazy and arrogant, according to BASW.

The reaction from social workers and from the BASW has done more damage to their cause than did the Eastenders episodes.

“Eastenders’ shabby portrayal of an entire profession has made a tough job even tougher”, writes BASW acting Chief Executive.  Talk about over-egging the pudding.  This is a portrayal of one single fictional social worker – not an entire profession – in a TV soap.  It’s not a documentary.

“BASW is also urging all social workers to vote against Eastenders in the National TV Awards, unless the programme’s producers can demonstrate a proper understanding of why the portrayal has invited such concern among social workers.”  Is that a mature response to a problem, or is it a childish foot-stamping reaction?

BASW quotes a whole load of abusive Tweets about the Eastenders episode in question – without providing any evidence of the reasons for those tweets, or the background of ‘who’ tweeted ‘what’ – but if it’s in the best interests of BASW, that makes it OK, does it?  Not in my view.

Perhaps BASW doesn’t need evidence.

Perhaps BASW and social workers really are lazy and arrogant.

Perhaps BASW and social workers have memory problems – they seem to spout the same ‘excuses’ when it comes to criticism of their profession, even when that criticism comes from Judges.

As here  just a couple of years ago.   ‘Courts distrust evidence from social workers.  Judges delay decisions in urgent cases affecting vulnerable children to hear from other experts, says report.  Courts are refusing applications to take children into care because some members of the judiciary hold social workers in such low esteem that they do not trust their evidence, it will be claimed this week in a major study.’

If social workers and the BASW want a realistic portrayal of a social worker on TV, they might be more than horrified.  Their shiny self- image might be seriously tarnished.  I’d even volunteer to write an episode or three!

To all those social workers who have been reduced to tears by about 5 minutes in total (so far) of a fictional portrayal of social work, my message to you is that I would like you all to be reduced to tears as often as I’ve been by the real-life actions of social services.    

Arrogant and lazy in the extreme were the social workers in my life.  Manipulating and re-writing their ‘paperwork’, and doing so on the instructions of their Team Leader who instructed them to make sure it was ‘watertight’.   He accidentally sent me a copy of his internal email – and also of the massive legal advice he’d had to seek to allow him to validate (not!)  his despicable actions.  Making decisions about a mature person, vulnerable because of her dementia – decisions made totally against the Mental Capacity Act 2005, hence the need for the paperwork to be re-written and waterproofed, on the instruction of their Boss.

Making decisions in a ward round that had long-lasting and devastating consequences for my relative – even though they had been warned by me about the possible consequences of the abuse of their powers of social services.

I used the words “if you do that, she will die”.  I was right.  They were wrong.

It took me years to get an explanation and a half-hearted apology from the Team Leader who was no ‘new kid on the block’’  He’d been around the block many times by the time his destructive power entered my life.

Apology?  I use that word loosely, but it went along the lines of the fact that the Mental Capacity Act is enormously difficult to understand, even for (so-called) professionals.  It included words like ‘new to this’, and ‘challenged’ but ignoring important matters like failing to do the decent thing, failing to consult properly with family, making decisions and fabricating paperwork to match his despicable directives.

It’s taken me more than 5 years to deal with the consequences of those decisions too – and my ‘dealing’ with it all is still serious, still ongoing and yes, I’ve shed more than a few tears over those 5 years.

The social workers in my life, and in the life of my relative, all colluded and contributed to the serious decline and unkind death of one gentle harmless kind individual.  Such was their arrogance; so great was their intransigence; so incompetent were they all.

That’s what I call shabby, irresponsible, despicable social work.

I won’t be shedding a single tear over the fictional portrayal of one fictional  social worker in Eastenders.

The BASW and its many social workers shouldn’t be shedding tears either.  They should all grow up and act responsibly and honestly, rather than hide behind their tears.

Bet you all that one single droplet of my tears is far more genuine than your accumulated and congealed tears.

Why I despise the so-called system of care for vulnerable people

I’ve been fairly controlled over recent weeks, months or even years.  I suppose I’ve been waiting and hoping for a chink of light to emerge, for a culture change to emerge, for a way forward to emerge in the so-called system of care that we have allowed to be in place.

However, I am reaching screaming point.  Hardly surprising.  When someone is destroyed because of absent systems of protection, and when it then takes almost 5 years to work your way through to a full understanding of why the so-callled system of care for vulnerable people fails to provide decent care so very often – that’s when you reach screaming point.

Time and time again, the CQC comes up with yet another report as it did today, with a report into the ‘care’ afforded to people with learning disabilities.  Or rather the lack of  care.  I’ve read it all, but there’s not much hope for real change.

Week and month after week and month, our government comes up with …… not one single plan to improve things.

Year after year, the same old same old same old gets published in the press, reported on radio, featured on TV.

Still nothing changes, so I need to scream now.  It won’t change anything – but it may just help me to scream.

[Next section of this particular blog post: Deleted temporarily pending the return of sense to the world of care.]

Therewith, I will leave this one for today.  But not for long.

NMC hearings schedules – aka close to Care in the UK

I omitted to post this :  NMC Hearings Schedule – 6th to 17th February 2012 – at Euston House, London.

All in the best interests of Care in the UK.

More later, but click here for the charges.  Same as above link – but I wouldn’t want anyone to miss it.

Legal nooks of care, whistleblowing, cotton in ears & velvet soles on boots

“Behind the most ancient part of Holborn, London, where certain gabled houses some centuries of age still stand looking on the public way, as if disconsolately looking for the Old Bourne that has long run dry, is a little nook composed of two irregular quadrangles, called Staple Inn. It is one of those nooks, the turning into which out of the clashing street, imparts to the relieved pedestrian the sensation of having put cotton in his ears and velvet soles on his boots.” –  The Mystery of Edwin Drood by Charles Dickens

That was “one of those nooks which are legal nooks”.

I was born and grew up not far away from that ‘legal nook’, long enough ago to have experienced the peace and quiet of the City of London on a Sunday morning (then!).  Little did I realise that I’d be reminded of Dickens’ description when I read the report on whistleblowers from Public Concern at Work – Speaking up for Vulnerable Adults : What the Whistleblowers Say.

There are far too many disturbing quotes from the report – which is very user-friendly so you’ll have to read it yourself – but here’s a few that grabbed me, from the 100 cases looked at:

• Year on year we receive the highest percentage of calls to our helpline from the care sector (15%).
• In care, 55% of all calls were about abuse.
• In 40% of all our care cases, concerns were initially ignored or denied by the organisation.
• Additionally this is a sector with many workers who may be considered vulnerable due to low pay, low awareness of rights and lack of access to or knowledge of support.
• Within the care sector itself, over half of the calls we receive are about abuse. The most common concerns being: physical abuse, lack of dignity, neglect, conduct of staff, verbal abuse and medication administered incorrectly or not at all.
• the vast majority of workers in the care sector (80%) have already raised their concern when they call us and over a third of these concerns are initially ignored, mishandled or denied by organisations
• care workers often do not realise that they are actually “blowing the whistle” until they encounter difficulties when having their concern addressed or are mistreated personally
• whistleblowers struggle with the lack of feedback from organisations regarding how their concern is being handled
• we also receive calls from workers across the adult social care spectrum including: social workers, safeguarding teams, volunteers, students, cleaners, doctors, nurses and other professionals.

And that’s all from the first couple of pages of the report!

The report looks at physical abuse, medication concerns, neglect, financial abuse and so on, and works its way through various case stories, all demonstrating the need for safeguarding vulnerable people in care and also the workforce providing that care.

It has allowed me to understand more of the reasons why I have needed to bang my head against a brick wall in recent years.  It also confirms to me what I sadly had to learn the hard way: that – in my own experience of dementia care – the local authority (all departments from the care commissioning team through to the Safeguarding/Adult Protection unit), the mental health care of older people multi-disciplinary team , the CSCI/CQC regulators and the care providers all colluded to care far more for themselves, to protect their own best interests above all others, than they ever cared for my relative’s best interests, and the best interests of other vulnerable older people in this particular part of the world.

They closed ranks in their own ‘legal nook’ to such an extent that I’m almost in need of care myself, because they have almost managed to transform me into a vulnerable adult, by their own sins of commission and sins of omission.  Almost, but not quite.

Not for the first time, I ask why everything can be hidden behind the word ‘confidentiality’.  We now have the vulnerable being cared for by a vulnerable workforce, according to this report, so it’s hardly surprising that nothing changes for the better.

It’s as if the whole care sector has become anaesthetised, numbed and indifferent to all that is going on under the umbrella of care.  I have been planning to write more about my own experience of dementia care, and this report has sharpened my resolve, so I will go back to the beginning and work my way through it all, chapter by chapter, stage by stage.

“…. the sensation of having put cotton in his ears  and velvet soles on his boots ….”

The cotton may still be in their ears – the velvet soles of my boots will have to be removed.

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.

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.

The Patient Resident deserves better care

If, as I suspect, the Comprehensive Spending Review allows the growth of independent care providers, my plea to everyone involved, in a professional or personal capacity, is to keep on demanding quality care.  Shout loudly and clearly, with the emphasis on the words quality care.  Until, that is, we achieve a standard of domiciliary care and residential care that we can be proud to call care.  Then keep a watchful eye.

The case of Jamie Merrett 37-year-old tetraplegic patient, who suffered brain damage when his ventilator was switched off by mistake at his home in Devizes, Wiltshire last year, is disturbing on many levels.  Sadly, there are numerous others who suffer the consequences of equally appalling care.

The Nursing & Midwifery Council code Standards of conduct, performance and ethics for nurses and midwives requires a registered nurse to ‘recognise and work within the limits’ of his/her competence. As far as I’m aware, that includes agency nurses as well.

Both Violetta Aylward and Ambition 24hours (the agency that provided her services to Jamie Merrett) share the responsibility for their actions.   I just hope that Ambition 24hours does not escape suitable punishment.   ‘One of the leading UK nursing agencies, Ambition 24hours, part of the A24Group, specialises in the provision of specialist nursing jobs for registered nurses and healthcare assistants for both temporary and permanent placement within NHS Trusts, private hospitals, nursing and residential homes, HMP Prison services, mental health and learning disability environments’.

Ambition 24hours needs to revise its ambition and to make care and control of itself its Number 1 ambition.  Only then should Ambition 24hours be given the right to provide care to vulnerable people.

It is not unknown for care home nurses/agency nurses/care workers to be well aware of the fact that their manager is making demands of them to carry out duties for which they are unqualified, untrained and unsupervised. The culture of care is such that they carry on regardless. The Patient Resident suffers the consequences – and perhaps dies as a result.

Then, everyone sticks together with the kind of superglue that takes years to dissolve. That’s what creates the foul smell of the ‘for profit’ culture – if you will forgive my language.

The nurse is protected by the manager or agency; the manager’s protected by the care provider’s regional manager; the regional manager’s protected by the care provider; the local authority’s ‘bed manager’ is protected by the commissioning department; the local authority’s protected by the LGO; they’re all protected by CQC – and so it goes on. Every single one of them has another layer of protection.

All except The Patient Resident, that is, and The Patient Resident has no layer of protection at all.  By the time the superglue comes out to cement all the guilty layers, The Patient Resident is beyond protection.  Too late did they all care.  Too late for The Patient Resident.

It’s only if you have the inner strength to spend 3 years or more, peeling away each of the layers that you discover the root cause. Nobody cared enough to ensure that each and every single layer was fit for purpose.

A for-profit multinational care provider or agency can import care workers from abroad who have only a minimal command of the language of those they are to provide care to, little knowledge of our health and social care systems, little incentive to go that extra mile. They have no job security, are paid a minimum wage, dare not speak the word abuse or neglect – they too are abused.

Unless, like John Adeleye, former dementia care worker/care home activity co-ordinator – recently departed from X Factor – the good publicity for his for-profit care provider former employer suddenly causes the care provider to care about him.  I hope he received a fat bonus from his former employer, Care UK, or at least a golden handshake for the good publicity he gave.

Care home charges are sky high for The Patient Resident. The Patient Resident is in need of care, so places their trust in the word ‘care’.  Neither The Patient Resident, nor his/her family, can possibly know the ins and outs of the care industry, at the very moment when they are looking for quality care.  It is only after a tragedy that the real truth emerges.  There was no such thing as care able to be provided.  But nobody noticed.  Nobody cared enough to notice.

Today, I’ve been reading about this new initiative called the Dementia Action Alliance made up of over 40 organisations committed to transforming the quality of life of people living with dementia in the UK and the millions of people who care for them.  Signatories to the Declaration have published their own Action Plans setting out what they each will do to secure these outcomes and improve the quality of life of people with dementia by 2014.

Why should it take you all that long?  Dementia’s been around for a century now, or rather it’s over a century since one form of dementia was given the name Alzheimer’s by Alois Alzheimer.  This troublesome elderly population has been growing older by the day for best part of a century too.   Get a move on!!

It’s interesting to note how many care providers are promising to provide the kind of care we all thought they were supposed to have been providing for years now!    Care UK even has the nerve to write into its own action plan: Whilst training has been recognised nationally as a key driver in achieving improved standards of care and delivery of care that is outcome focused, there is limited funding available to deliver this training – well, I could suggest a source of funding to you.  Have a look into your own company’s profits.    Have a look at all the profit you must have made from ‘cutting corners’ here and there and … round the corner.  Or even take a few of the £millions of compensation you have pulled in from the numerous contracts you failed to deliver, but for which you had negotiated 25-year contracts.  You’ll probably get more compensation from this latest one in Newcastle.

The Department of Health (DoH) and several care home groups have promised to reduce the use of anti-psychotic drugs to subdue dementia sufferers.  The use of ‘chemical cosh’ drugs for dementia patients will be cut and sufferers kept out of hospital beds, an unprecedented coalition of 45 organisations has pledged.  Please don’t leave that until 2014 too.

GET A MOVE ON!!!!

The Patient Resident and The Patient Resident’s family may not have the time to wait for you all to get a move on!!!!

The meaning of CSR?

CSR = Comprehensive Spending Review

CSR = Cheer Smirk Rejoice

LibDemCon MPs cheered –they smirked – they rejoiced.

LibDemCon MPs applauded, smiling, seeming satisfied that they had destroyed enough.

Coalition Ministers smiled even as their own departmental budgets were cut.

The poorest will lose a higher proportion of their income than the average, according to the government’s own graphs.  Brendan Barber TUC General Secretary said that the poorest tenth of the population would lose a fifth of their income because of Coalition cuts; the richest would lose just 1.5 per cent of their income.  He may now revise that estimate.

Some councils will go bust.

750,000  public sector job cuts are forecast.  Or more?

Twice as many women as men work in the public sector and 40% of all female workers are employed by the state.   Women have been encouraged to become gainfully employed, largely in the public sector, with young children being placed into childcare, another largely female industry.  The majority of care workers are women.  Not many male librarians where I live.  It’s rare to meet a male in local admin jobs either.  Is this a plan to send women back to the past?  Could that really be seen as progress?

An additional £7bn welfare cuts, on top of the £11bn already announced.

The convenient accounting that has gone on with the £2bn to social care (via the NHS in part) is a con!  That money is not ring-fenced, so it will just be swallowed up by the big local authority pot that has just been cut savagely via the CSR.  Goodbye social care; an unwelcome return of the poorhouse/workhouse. And don’t be fooled by this attempt to persuade people to use Personal Budgets.   They are enormously complex to operate, requiring most people who’ve tried them to turn themselves into employers, or to employ someone to manage the Personal Budget for them.  Or is that another part of the con trick?  The responsibilities of unpaid carers will increase; the burden of care will fall on their shoulders.  Their narrow shoulders, not the broad shoulders mentioned by Creepy Osborne.

Any government that can remove the mobility component of DLA from people in residential care cannot sink much lower.  At the moment, many people in residential care are allowed the grand total of £21 per week for ‘spending money’, after their care costs have been paid for.  That’s all they are allowed to retain.  Remove the mobility allowance and they will be trapped forever, within the walls of the care home.  Is that really the best we can offer and still call it ‘care’?

The IFS says spending review cuts are regressive and will hit the poorest in society, not the richest.

This is not what I call ‘fair’.  Nor are we all in this together.  The Big Society?  Not sure that one will wash any more!

By strange coincidence of the calendar, Nick Clegg has just been named Communicator of the Year at the PRWeek awards.  “The judges (sixty-two senior PR professionals) praised Clegg for his smart general election communications campaign that positioned him as a fresh alternative to the other political parties.

In fewer than 12 months, Clegg has gone from leading a party frustrated by a lack of media attention to the full glare of the world’s media, as he walked side by side with Prime Minister David Cameron into 10 Downing Street on 11 May.”

Style over substance; if Clegg was that good a communicator, the Liberal Democrats would have won the general election, as opposed to having to swallow everything they ‘communicated’ beforehand in order to shack up with the Tories.

Joanna Lumley won that same award last year.  “She was chosen by judges for her work spearheading the Gurkha campaign for settlement rights. As a figurehead she was able to move seamlessly from the media scrum to heavyweight political programmes such as the Andrew Marr Show, and had the clout to secure meetings at the highest political level.”

Joanna Lumley might make a better fist of government than this bunch of clowns.

Care home secrecy slammed

It is with some considerable personal pleasure that I have just read  in the East Anglian Daily Times that POLITICIANS have hit out over secrecy surrounding an Essex care home which was shut down amid abuse allegations.

If any politicians would like to ‘hit out’ over the secrecy surrounding Lennox House care home in Islington, they only have to ask me, and I will provide as much detail as has so far been available in the public domain – and I can provide far far more than has ever been made available in the public domain, if that’s what would help you, Politicians, to achieve honest, decent, caring systems of care for our honest, decent, caring vulnerable elderly citizens.  The rest is still shrouded in secrecy.

They have slammed a decision to bar the public from a meeting next week where lessons learned from the saga at Greenways Care Home, Colchester, will be discussed.

Well, in Islington family were barred from meetings too – let alone the public.

Why does this all interest me enormously?  Because my own relative was the person who suffered neglect, which is a form of abuse, in that Islington care home, Lennox House.  Nobody from our family was allowed to attend any one of the ‘meetings’ held.  We have never been allowed to see the full report either.

But the care home management, the care home provider, the healthcare professionals, the social care professionals were all invited to attend those meetings.  The care home management, the care home provider, the healthcare professionals and the social care professionals were all provided with a copy of the full report of the investigation carried out into the neglect of my relative.  So that they could all comment on  it and have any ‘amendments/alterations’ made before it was finalised.  That is one aspect of the whole mess that I will never understand.

The family of the person who was the vicitim of abuse in care, neglect in care,  was not allowed that same privilege.  No ability to attend meetings; no ability to contribute significantly to the final report; no ability to inisist on changes to that final report – other than simple factual inaccuracies, that is.

Our family member was no longer in a position to ask to attend meetings, to see the report before it was finalised – she died within 3 weeks of suffering that abuse/neglect in care.

The Safeguarding Adults team ‘chose not to inform the police’; they chose not to inform the Coroner either; they chose not to inform family that they had the right to ask the Coroner to conduct an inquest.

And yet, the whole situation was considered sufficiently serious for the then CSCI  to impose ‘enforcement action’ and to refuse new admissions for a year to Lennox House.  The CSCI inspection reports are all still available on the CQC website.

The perpetrators  are the ones to have been protected.  The care home provider that couldn’t provide care has been protected.

What was that policy called?  I remember –

NO SECRETS

No secrets: guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse

Our relative wasn’t protected.  She was dead before anybody thought about massive ‘action plans’ and ‘enforcement action’, all of which the Care Provider willingly complied with of course, and all of which will have been of benefit to the other residents and future residents.  Too late for our relative.

My thanks to Vern Pitt at  Community Care for bringing to my attention the fact that politicians seem to have opened their eyes.  Long may they stay open.

Open up please also the hearings/meetings/serious  case reviews/adult protection procedures to public scrutiny.  Otherwise we will never believe that you really care.  And then we too can see whether lessons have been learned.

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.