Tag Archives: dementia care

John Redwood doesn’t care about care

Now we know where John Redwood MP stands or rather sits, when it comes to the Dilnot proposals and the future funding of care.  As long as it doesn’t need to hit his pocket, he doesn’t really care.

In his paper Care for the Elderly – The limitations of the Dilnot Proposals – Redwood tries to make the point six times over that Dilnot is all about protecting inheritances.  He uses the word ‘inheritance’ twice as often as it featured in the Dilnot Report, where the word was only used in connection with people who themselves had inherited.

One example given by Dilnot of how his proposals might work: Emma was born with a learning disability. Her mother died when she was 35; she then had to move into supported housing. She inherited £150,000 from the sale of her mother’s house. She died aged 52.

 Under the current system, Emma received all her care and support free of charge up until the point at which she inherited £150,000. From then on, Emma had to use these assets, along with disability benefits, to pay for her supported housing and care and support costs. By her mid-40s, she had spent down her assets to £14,250, the means-tested threshold, and received support from the state, without charge.

 Under our reforms, as Emma would have turned 18 with an eligible care need, she would be deemed to have met the cap and would receive all her care without charge for the whole of her lifetime. She would have contributed to her general living costs partly herself and partly through her disability benefits. She would spend half of the £150,000 on her general living costs, but could use the rest of the money throughout the rest of her life to improve her overall well-being.

This Guardian article – Redwood attack on cap for care bills of elderly dismissed – tells us more:

‘Asked whether this “unfairness” could be alleviated by taxing the rich a little more, the former Tory minister replied: “Some people might want that. I do not.”’

I am sick and tired of hearing and reading about ‘protecting inheritances’, especially whenever that talk comes from MPs many of whom have inherited a goodly fortune and who will never need to call out for care and support.  Also, it comes from social workers who should know better.  It destroys any ability to concentrate on the real issues of whether or not we, as a relatively prosperous nation, should provide a decent standard of care for those who have no choice but to rely on that which is handed down in the name of residential care.  We can find the money to pay for many things, as a proud and rich nation, wihout harping on about the inheritances of others.  What will be the total cost of the 2012 Olympic Games?  The tax-payer is never asked whether s/he would like to pay a bit more tax – we have no choice in the decisions of John Redwood.  He has the power to decide what happens to us – just by turning up at Parliament and voting.

When I first came into contact with a social worker, she never even had the guts to tell me that she had never worked before in the locality so knew nothing about it; that she had never worked with the mental health care of older people team; that she knew nothing of the service provision in the local authority area; that she knew nothing of dementia and all that dementia brings; that she was a locum.  Her first question was all about money – how much money my relative had in the bank.  If only she had been as open with me about her ‘status’ as I was about the status of my relative, I could have helped her.  Helped the social worker, I mean.  I could have helped the social worker to help my relative.  But all my requests to her were met with the phrase “I’ll see what I can do” – and that usually turned out to be absolutely nothing.  Meanwhile, she caused chaos in the life of a vulnerable person with dementia.

The next social worker I came into contact with was not allowed to speak until she had been CRB-checked, so sat silently at the first meeting.  When she gained her voice, it didn’t take me long to work out that she came from another country.  She was seconded to the same mental health care of older people team; she had never worked with vulnerable older people; her only experience was in the field of childcare and also adoption.  She didn’t want to blot her copybook, so she turned out to be the proverbial chocolate teapot.

A few months later, when I asked her what her next ‘career move’ was, she replied “To go back to Australia as quickly as possible”.  She had been using the system in her own best interests and for a brief while to enhance her CV.  She was gone soon, back where she came from.  Meanwhile, she too caused chaos in the life of a vulnerable person with dementia .

So when I hear about ‘inheritances’ from rich MPs and others who will never need to call on the care system for knowledge and support, or from social workers who know the system inside out but don’t always share that knowledge, I feel the need to ask those who care about these things to consider the ‘inheritance’ they leave behind.

The inheritance they leave behind can be devastating.  What a proud legacy.

Meanwhile, our coalition government (if they’re still around in 2017) will feather the nests of the care providers.  At the expense of those who’ve cared more than they ever did.

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The cost of care

In a funny sort of way, it’s comforting to read this BBC report about a care home provider having just opened a brand new care home providing “en-suite rooms, a hair salon, a library, landscaped gardens and a private dining  room for special occasions”.  It’s even more comforting to learn that all rooms will be equipped with sensors to alert staff if someone falls or has stopped moving.  Tht doesn’t guarantee the staff will respond, of course.

Don’t stop reading yet – because it gets better by the line.

A 12-week induction training period – including dementia care –  for all staff, and that means all staff including the handyman.  Is that 5 days a week? No, surely not.  Is that one day a week for 12 weeks?  No, doubt it.  Is that one hour per week for 12 weeks?  Sounds more likely …. but as long as that  12-week induction training period remains undefined, it may sound great but it could grate later on.  So it could be as little and as meaningless as possible.  But affordable, as far as Anchor is concerned.

The staffing ratio is to be one carer to five residents, so that customers can be cared for the way Anchor wants them to be cared for.

Residents will be able to choose what they eat and when they eat it.  So presumably they will also be able to choose when they go to bed, rather than being treated like little children and made to undress and get ready for bed at 7 pm.

This is all designed for the so-called baby boomer, property rich generation, who will be self-funding their care for the foreseeable future.  Jane Ashcroft, chief executive of Anchor and head of the English Community Care Association, says: “They have higher expectations, they have grown up in a world with all the mod cons and been to hotel rooms with all the modern facilities.

“They will demand that for themselves and also their parents who are in the system now. It is about offering a wide range of services to cater for everyone’s needs.”

So, anyone who is not in that baby boomer, property rich generation will not be so comfortable, because they won’t get a look in once the trend moves towards luxury care homes for self-funders only.  Yet, they and their relatives also have high expections of the word ‘care’ and of the world of ‘care’.

Hang on a minute!  Wait a minute!  Shouldn’t the standards of care being offered in this brand new Anchor care home, West Hall, West Byfleet, be the standards of care that every single person needing care home care should be able to expect?

Or is it only to be made available to those paying £1425 per week?  There are already many care homes charging £1000 plus per week but not providing anything like that staffing ratio of 1:5.  I know of one care home where the staffing ratio in the nursing section was one RGN plus one brand-new healthcare assistant to 28 people in need of 24/7 nursing care – neither the RGN nor the healthcare assistant knew much about the word care, though.

This all sounds great, especially when you read that  West Hall care home was only built because Anchor could largely finance it itself through its reserves.

Reserves that have already had a fair old contribution from local authority funds.  An earlier BBC report told us that Surrey County Council paid about £2.5m in 2010 to healthcare providers for beds it did not use.  The authority said then that it was “worried” by the figure paid to health firms Anchor and Care UK but was working to renegotiate the contracts.  “Under the terms of the contracts, the council pays the companies for the use of  1,000 beds. Last year, about 10% of those beds were not needed.”

How long has this been going on?

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Who’s keeping a finger on the pulse of care in care homes for the elderly?

The results of a ‘care homes survey’ carried out by PULSE make for interesting reading.  Interesting, but also shocking for anyone who has ever questioned the standards of care in a care home with nursing.

A significant minority of the 100 PCOs responding to Freedom of Information Act requests do not provide even basic care-home services, with 14% providing no access to tissue viability nursing, and 10% have no access to continence advisers.

The investigation, which involved submitting three separate FOI requests to each PCO, reveals the patchy nature of services across the NHS, as well as the headline findings of soaring numbers of serious incidents and sharp funding cuts.

Of the GP practices that responded to the survey:

67% say that the funding they receive for the care of patients in care homes is not adequate for them to provide a safe and effective service.  14% say it is adequate; 19% don’t know.

61% say that the arrangements for the medical and nursing care of patients in care homes is not organised satisfactorily in their area.  26% say it is satisfactory; 13% don’t know.

41% say that on unscheduled call-outs, they ‘sometimes’ receive the information and nursing back-up they need.  9% say they always receive it; 28% often; 19% occasionally; 3% never.

40% provide once a year medication reviews for patients in care homes.  33% once every six months; 17% once every three months.

60% said they were ‘sometimes’ left with no option but to prescribe antipsychotics to patients with dementiathat is unacceptable, a totally unacceptable way to treat patients with dementia, if ‘treat’ is the right word.

42% rated the nursing care of patients in their local care homes for the elderly as acceptable.  5% ‘very good’; 23% ‘good’; 23% rated the care ‘poor’;  6% rated the care ‘very poor’.

44% rated the nursing care of patients in their local nursing homes as acceptable

48% had observed Staff sloppy or unprofessional in their local care homes.

40% found Staff lacking in compassion

72% found Poor quality of staff training

47% found Patients denied their dignity or sufficient stimulus

6% found Evidence or suggestion of abuse by staff

And yet:

65 & of those GP practices had not complained in the last year about the quality of care for residents in care homes;

23% had complained;

12% don’t know.

Astonishingly:

58% of those GP practices who had complained did not know whether the complaint was satisfactorily investigated by their primary care organisation

24% felt it was not satisfactorily investigated

17% felt it was.

Many more staggering statistics in the full survey report, but it is distressing to read that 53% of those who responded found that Mental Health Care services and 34% that Continence Support were being savagely cut for care home residents.

Dr Krishna Chaturvedi, a GP in Westcliff-on-Sea in Essex, said: ‘Our practice has served more than 10 residential homes for 20 years but due to the increasing stress, we decided to take all homes off the list after making several pleas to the SHA and PCT for extra support, none of which was forthcoming.’

Is this really what we mean by “CARE”?

The vast majority of people in need of residential care, with or without nursing, come from  a generation of stalwarts that grew accustomed to the understanding that if you want a job done properly, you should “do it yourself”.  And they did just that, for as long as they possibly could.   There are some things they no longer can do for themselves.  If Cameron and Clegg and Co. continue with their vicious cuts campaign, they will force that generation to suffer the consequences.

Is it time for the words care home to be erased from our vocabulary?

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How fair is Britain?

I’m half-way through reading “The Greatest Show on Earth” by Richard Dawkins.

I’m hooked!

Alongside, I’ve also been dipping into the first “Triennial Review “published today by the Equality and Human Rights Commission.  No, I haven’t read the full 750 pages yet, but I’ve read the transcript of the video overview, and a good few more pages too. 

Read more ….

I’m twice hooked!!

OK, I admit it was the word ‘triennial’ that grabbed me … for purely personal reasons.  I am approaching a first “Triennial Review” that is all my own.  Namely the Triennial Review that I promised myself I would conduct at the end of my 3rd year (yes, third year) into the circumstances of neglect that surrounded my own relative in need of caring care.  But neglect was all that came her way.  And she died a painful death, and an earlier than anticipated death, as a result of that neglect.

“It’s the job of the Equality and Human Rights Commission to help society make further progress.”  Would that be the Big Society that David Cameron keeps banging on about?  Or the other (only?)  Society that we all know of old?  And yes, I am quietly hoping it’s the second of those two options that the Equality and Human Rights Commission strives to help.

Can you help me also, EHRC?  Can you help me to achieve progress, as I work my way through the muck that is being delivered (almost daily now!!) from those who are supposed to care about ‘fairness’ and to care about ‘care’?  If you are able to do that, please get in touch and I will graciously accept your assistance.

Or are there two societies now?  One Big; one Small.  One where ‘fairness’ is defined by the Big Society backed by the ConDemNation, to the detriment of the Small Society comprising the little people?

“This October we are publishing our first ever such review, entitled ‘How Fair Is Britain’.

It describes the chances, choices and outcomes in life of people from all different groups.”  I’m still looking for a few words in the transcript: older, people, dementia, in care, but then I found some of them in the online summary.

Care and support:  (follow the link below if you care to read it all ….)

http://www.equalityhumanrights.com/key-projects/triennial-review/online-summary/care-and-support/

“As might be expected, we are more likely to need care as we grow older. We are also more likely to provide it later in life, as we have children and as our families and friends age with us.”

Don’t get me wrong, EHRC.  I applaud our past history of fairness, our well-known and well-recognised tradition of fairness and respect for other points of view, culture,  gender, race, sexuality,  religion and so on … that meaningful equality (as you call it) that we have achieved.  Historic prowess shouldn’t allow for complacency.

History is neither our present, nor our future. We must find the way to demonstrate today that we value and care enough about our history of fairness, our reliable traditions connected to our history of fairness, and our past celebrations of our ‘fairness’ to carry us forward to our today and to our tomorrow?

It is not enough though to express good intentions, what matters is making a practical tangible difference.  And you can’t hope to make change happen in the real world without looking hard at the facts.

I do appreciate that you’re also in a fragile state, EHRC, being – for want of a better phrase – currently under review.  But then again, I do wonder whether this fairness that we purport to attribute to this (as we would like to see it) fair nation of ours really does care, or even  whether the word ‘care’ may disappear from our vocabulary fairly soon, to be replaced by … neglect.

The spending review currently being imposed by our Married-by-Convenience Coalition Government may well demolish all of our hopes for ‘fairness’, especially fairness in old age.  If we allow everything that has become known as caring care to be scrapped without decent consultation and without decent consent, then the Older Person will be thrown out with the mucky bathwater.

Do we really care?  If so, why don’t I believe you?  Why is our ‘caring care’ not visible?  Why have I spent 3 years of my life trying to establish whether or not we/you/they really do care?

Have we evolved enough to care?  Or are we in need of another “Blind Watchmaker”?

Will I be thrice hooked?  Ever?  Never?

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The time has come ….. e’en though I’m no walrus!!!

I’ve ben fairly restrained thus far in my adulterated vitriol …. which otherwise would have been sent hurling and spitting towards those so-called support services that came my way over the last few years.

The last few years, that is,  of my own life when I forded the shallow waters between an otherwise normal life and the abnormal life across the shallow water of someone needing care and support.  The indescribable chasm ‘twixt the normal world of most of us and the abnormal world of dementia.     So different are those two ‘worlds’ that I cannot even begin to find the words to talk about it all.   Yet.   
But I am hoping to find a way, a route map, the Ordinance Survey Map, if you will, of my own personal walkings through the world of dementia and dementia-care.

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Seven steps to end the scandal of malnutrition in hospital

A poll of 1,000 nurses for Age UK found just under a third did not feel confident that malnutrition would be noticed by staff.

Fewer than half said their hospital screened patients on arrival, as guidelines recommend.

Age UK has published a report Still Hungry to Be Heard – The scandal of people in later life becoming malnourished in hospital four years after the last campaign ‘Hungry to be heard’.

Age UK’s seven steps to end the scandal of malnutrition in hospital
Step one
Hospital staff must listen to us, our relatives and our carers
Step two
All ward staff must become food-aware
Step three
Hospital staff must follow their own professional codes
Step four
We must be assessed for the signs or risk of malnourishment
Step five
Hospitals should introduce ‘protected mealtimes’
Step six
Hospitals should implement a ‘red tray’ system
Step seven
Hospitals should use trained volunteers where appropriate

It’s not rocket science; it’s basic care.  It would be a positive demonstration of caring care if our government introduced compulsory monitoring of nutrition/malnutrition in hospitals.  And compulsory monitoring of the care and attention needed by people with dementia when they are in hospital wouldn’t go amiss either.

From The Seven Ages of Man, via the Seven Stages of Dementia, to the Seven steps to end the scandal of malnutrition in hospital.

More on the power of seven another day.  And a promise to those of you who have demonstrated that you care, there will be more about the Nuns who fled from the prospect of being placed into residential care, far away from where they would have chosen to live.  I’m watching you, Sisters, past and present and future.  There is more to come, but meanwhile, I’m off!!  To distant climes, and for a spell of relaxation.  Miss me, perhaps!  Or not, as the case may be.  It may not make one iota of difference to you or to me, while I am in far off regions.  Close to the powerful Nuns, but not that close.

Back whenever.

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

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

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

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

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

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

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

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

But who cares?

We care.

We really do care.

The person in need of care cares.

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

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

But who cares enough to listen to us?

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

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

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

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

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

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

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

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The furnace of dementia care in the UK

The Seven Ages of Man became fixed in my being when Miss Edwards, our fearsome English teacher, forced me to abandon my preferred 4-line poems.  She had insisted that we should all learn a verse of our own choosing, every single week.  On Friday afternoons at 2 pm precisely, Miss Edwards would call upon her victims-of-the-week to stand before the class to recite the poem they had sweated over.

I was never that good at poetry recitation, and Miss Edwards was well aware that I’d taken the easy option for just about as long as she was prepared to tolerate.  I was instructed to try harder.

‘Twas on a Friday afternoon when I beheld Miss Edwards and took her breath away.  By dashing away with the The Walrus and the Carpenter – word-perfect from start to finish.  Admittedly, I took my own breath away too!  I was fairly popular that Friday afternoon – few of my classmates were called upon to recite their own verses.  Miss Edwards needed a long weekend to recover from the shock.  In my innocence, I had little idea of the possibly deep but enormously relevant – now – interpretations of Lewis Carroll’s work.  A dementia care satire, perhaps.

Miss Edwards left me alone for a good few weeks before pouncing again, as all good teachers do.  I was plucked – and You are old, Father William came to my rescue.  I was in my Alice phase.

Then, much to Miss Edwards’ delight, came The Seven Ages of Man.  I’d grown and moved onto another stage.  To this day, I can still recite You are old, Father William and The Seven Ages of Man, plus a few bits of The Walrus, but by no means all.  This one has certainly stayed with me :

“The time has come,” the Walrus said,
“To talk of many things:
Of shoes–and ships–and sealing–wax
Of cabbages–and kings–
And why the sea is boiling hot–
And whether pigs have wings.”

Thank you, Miss Edwards.  I may not have appreciated your wisdom then, but I do now.

Recently, when I came across The Seven Stages of Dementia, I realised that I was unconsciously linking those seven ages of man to the seven stages of dementia care that sadly have been part of a more recent stage of my life, via the dementia of my own relative.  All flattened, compacted and condensed into one grim and fairly short period of the otherwise long, happy and strong life of my relative.

There were many players involved in this tragedy.  One shining unsullied star.  Other less desirable characters, all with their entrances and exits, some quicker than others.

All never-to-be-forgotten performances

  • Much mewling and puking
  • Much whining
  • Much creeping like snail
  • Cannon’s mouth ready.
  • Strange oaths, false promises
  • Spectacles mislaid
  • Fat pouch on side
  • Few shining faces.
  • No nurse’s arms
  • No honour, no grace, just disgrace
  • No chance of second childishness.
  • A furnace hotter than hell.
  • Sudden and quick in denial
  • Seeking the bubble reputation
  • Justice?
  • Oblivion

Sans purpose, sans control, sans care, sans everything

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Baby P and another knuckle in my experience of care

These words from Outside Left are causing me to remember that I have knuckles:

Slowly but surely, the true picture is emerging of widespread failure involving many people in different services.

I didn’t have a Baby P, but I had the equivalent of Baby P.  She had a longer life than Baby P, but an equally horrible death.  Baby P was only a baby; she was an 83-year old.  Baby P was neglected within his own family and by those who were charged with looking after his life; my 83-year old was never neglected within her own family, but was seriously neglected by those who were charged with looking after her life.

It’s almost 3 years on now since she was found to have suffered “sub-standard care” also known as neglect in a care home, and which resulted in her death.  A care home that was not fit for purpose.  But who cares?  Who cared about her?  I did, and I do.

There was indeed widespread failure involving many people in different services, in my own personal experience of ‘care’ aka ‘neglect’.  I’ll try to list a few of them:

  1. The Local Authority;
  2. the Mental Health Care of Older People Team;
  3. the Social Worker working for the first time ever on behalf of older people with dementia – a locum social worker who knew nothing of the locality or of dementia.  If only she had told us that then, we might have worked out a way to help her too, but we didn’t know it then;
  4. the next Social Worker  seconded to that same  MHCOP team from the Local Authority, but who seemed to have been ‘shackled’ sufficiently to render her in total awe of her job-providers and her experience-gaining-secondment from Australia (!);
  5. the extra-care sheltered housing, contracted by the Local Authority and recommended as ‘suitably suitable’ by the first Social Worker;
  6. the domiciliary care agency owning and providing domiciliary care to that same extra-care sheltered housing complex, which was run in the best interests of the agency staff working there and where the main focus was on independent dying, not independent living;
  7. the Assessment Ward of the Mental Health Unit via the NHS/PCT/Trust/Partnership …. changed its name so many times;
  8. the Local Authority’s Adult Social Services/Housing department with particular responsibility for housing those in need of care;
  9. the Local Authority’s commissioning department who are supposed to commission and contract safe residential care services;
  10. the CQC / CSCI departments charged with regulating, inspecting, reporting on and ensuring the safe regulation of residential care  homes with nursing and ensuring that they are/were all above board and safely guaranteed competent to receive vulnerable elderly people with dementia;
  11. the care home, who had no systems of protection in place;
  12. the care home provider with a 25-year contract to provide safe services to vulnerable elderly people with dementia;
  13. the Adult Protection Coordinator who could and should have helped us through the months that followed ….   …. ….
  14. All of the above agencies who had not realised that there were no systems of protection in place.

I can’t begin to tell you all how it feels to list the above, and I have to make a huge effort so as to avoid a further few ‘agencies’ involved.

I’m feeling almost weak at the knees remembering and trying to create a coherently readable list of all the agencies involved.

But they all failed.  From start to finish.  Each and every one of them failed.  Failed to protect and preserve life.

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