Patience a virtue?

Patience may well be a virtue but it may also tarnish your spirit.

This blog of mine has been silent for many months now, because I was patiently waiting and hoping that Care UK might just find it possible to be as virtuous as my patience has been since 2007.  Sadly, I now know that is not to be.  I waited and hoped in vain.  Foolishly, I gave the benefit of the doubt to Care UK.  Back in 2007 when I allowed my relative to be placed into one of its care homes, I placed my trust in Care UK.

From when my relative died, then through all the investigations and reports written by the Local Authority – with input from all and sundry –  and right through to the end of the hearings at the NMC in 2013, I continued to trust.  After the conclusion of those NMC hearings, with two nurses being struck off the NMC register, and two more having serious conditions imposed on their ability to continue working in this country as nurses, I asked Care UK to do the decent thing.  We entered into what began as meaningful and purposeful correspondence.

Since then, I have been passed around like the proverbial parcel.  Kicked about like a football.  I lost count of the number of times the goalposts were repositioned again and again. I’ve been bounced from Care UK to solicitors to financial bigheads to insurance policies, then back to bigheads and even bigger heads.

Care UK has shown itself to me to be a business stripped of humanity.

Fortunately, over the last year or so, I’ve been able to put my thoughts and feelings into another blog – far removed from this one, and not on Care UK’s radar, as this one has been.  But over the last few weeks and months, I’ve received so many kind comments about this particular blog, that I have decided to return to it and to resurrect it.

I’ll be back soon.

The value of a life in a care home

The Health & Safety Executive publishes a very sad story here and it is indeed a message to all those – including care providers –  who fail to understand the importance of systems, care plans, risk assessments, record-keeping, staff training and communication.  To mention but a few.

“The UK’s biggest care home provider has been ordered to pay £170,000 in fines and costs after a vulnerable resident choked to death on fish and chips during an entertainment evening at its Chorley premises.”

“The company, of Groves Road in Douglas, Isle of Man, was fined £125,000 and ordered to £45,000 towards the cost of the prosecution.”

“Our hope is that the seriousness and financial implications of this case for the company will ensure that nothing like this will ever happen again at a Four Seasons or any other care home. This would mean that Rita’s tragic death will not have been entirely in vain.”

A caring care home with a pub in the garden

A care home that listens to the residents and fulfils their desires.

“A “pub” has been set up in the grounds of a care home in Shrewsbury after residents were asked for suggestions for the garden.

Coton Hill House expected requests for flowers or benches but pensioners instead called for somewhere they could enjoy their favourite tipple.

The opening of Ye Ole Coton Arms summerhouse was celebrated with a barbecue and free bar.

It will stay open for the rest of the summer.”

Thanks to BBC News for this uplifting story.  I sincerely hope that summer lasts a very long time this year, extends to the Christmas period and well into the New Year.

“”It is free of charge to all residents, and, as expected, is proving to be very
popular with them.”

Congratulations to Coverage Care Services Limited.

May the residents go from strength to strength, and may their elbows enjoy the exercise.

I’ll be raising a glass to Alison Gough and all at Coton Hill House.

Thoughts on diabetics’ access to blood glucose strips being restricted

A timely reminder appeared on the BBC website today in the form of this piece bearing the title Diabetics’ access to blood glucose test strips ‘restricted’, which led me to the Diabetes UK report Access to test strips – A postcode lottery? (Aug 2013) .  The Daily Record from your short time in Care UK’s Lennox House care home featured heavily at the NMC hearings that started in February 2012 and concluded in April 2013.

One entry in the Daily Records was a strange entry, written almost as a post-script afterthought once you’d been admitted to hospital in a diabetic coma.

That entry (unsigned, by the way) gives the results of a urine test, and alongside is bracketed the following: “There was no available glucose strip since the GP does not prescribe according to Deputy Manager & Home Manager”.

Does that not appear to be a peculiar entry in a record of care?  It almost looks like an attempt to validate the absence of care.  The full urine test results were indeed alarming.  I’m not a medic but it didn’t take me long to work out which parts of the results should have rung bells.  But the care home didn’t find them sufficiently alarming to call an ambulance, because they waited  another 15 hours before doing so, by which time you were in a desperate state, with spasms lasting nearly half an hour noted hours before an ambulance was called.

When I arrived in A&E, soon after your arrival there, I was asked to explain how your diabetes had come to be ‘so out of control’.  I didn’t know that it was out of control, of course, but the hospital for some reason thought that you lived with me and that I was responsible for your care.  Not so.

When I asked the manager to explain to me what that entry in the Daily Record meant, she said that the GP refused to prescribe test strips for the care home, and that Care UK also refused to supply them.  That’s the point at which I offered to pay for a full year’s supply for the care home so that no other person would suffer the way you did.

During the investigation into what happened with your care, the investigators were told that test strips had been bought from a well-known chain of chemists – but no evidence could be found to support that.  Not even a petty cash record.

However, at the hearings at the NMC, there were other and different rationales put forward.  One proposed by the manager was that your diabetes was ‘diet controlled’ and not medication-controlled.  Not so.  When she saw you, allegedly just before she left the building, you were “warm and pink” and you gave no indication of distress, pain or suffering.  What a shame she didn’t have the time to act on your urine test result, that she was surely informed of before leaving the building.

You were not in a position to monitor your own glucose levels.  Vascular dementia made that impossible for you, and in any case your previous GP (not the one providing services to Lennox House) had monitored you regularly, as had your clinic appointment regime.  You never missed an appointment.  It was the responsibility of the care home to monitor your diabetes – that’s what care homes are supposed to do.  Care.

Another memory has been brought forward by today’s reports.  The GMC (General Medical Council) was informed by the GP involved that she had no knowledge that you had diabetes, and that had she known she would have carried out the required test and had you admitted to hospital.  The NMC was told a very different story by the nurses involved, namely that the GP had indeed been informed of your diabetes when she visited you (and prescribed an antibiotic for a suspected UTI).  They can’t all be right, can they?

Again at the NMC hearings, mention was made by the manager and other nurses and their representatives  that there had been no training in diabetes at Lennox House, before your arrival there.  It was even said that there was no specific training in diabetes given for a couple of years after your death.  Not so.  Would nurses never have heard of  Hyperosmolar Hyperglycaemic State (HHS)  (previously called  Hyperglycaemic Hyperosmolar Non-ketotic Coma (HONK) or  Diabetic Ketoacidosis  (DKA) ?

Diabetes UK calls the restricting of access to test strips a lottery.  You definitely did not win the lottery in Care UK’s Lennox House care home where your diabetes was neither monitored nor tested, whether by strip or by other means.

Barbara Young, Diabetes UK Chief Executive,  said “Rationing test strips to save money does not make any sense, because  it is putting people at increased risk of complications that are hugely expensive to treat.”

You’d be a fool to argue with that.

I sincerely hope that Home Secretary Theresa May, recently diagnosed with diabetes, will not find her access restricted.  If she does have that experience, she will no doubt take steps to ensure the restrictions are lifted.

Care in the UK makes progress

Last week saw the final stage of the hearings, at one of numerous NMC locations that have hosted the fitness-to-practise procedures, into the lack of nursing care provided to you during the time you were in Lennox House care home, Holloway/Islington, in 2007, and just before your death.  Appropriately enough, we were directly opposite the Old Bailey for the finale.

Over the main entrance to the Old Bailey, which opened in 1907, figures were placed representing fortitude, the recording angel, and truth, along with the inscription

“DEFEND THE CHILDREN OF THE POOR & PUNISH THE WRONGDOER”

As I sat in the hearing room on the 5th floor of the building,  those words were directly in front of my eyes all week.

On 17th April 2013, Sheila Ali the former care home manager / nurse  was struck off; her name is removed from the register of nurses allowed to provide nursing care to people.   She wasn’t present to hear the decision because, overnight, she decided suddenly to withdraw from the proceedings, and to remove her instructions from the barrister who had represented her.  When he announced this to the hearing, he was invited to leave.  He left.  So neither of them was present to hear the decision.

On 19th April 2013, Dahlia Dela Cerna/Enriquez wept as she received a 2-year caution order, having been found guilty of misconduct and with current impairment.  That’s the first time she’s shown anything that resembled human emotion.  They have all shown callous disregard for you – and for me.

On 21st December 2012, Catherine Igbokwe was struck off,  having been found guilty of misconduct and with current impairment, so her name was removed from the register.

On 21st December 2012, Maria Rholyn Secuya/Baquerfo received a 3-year caution order, having been found guilty of misconduct and with current impairment.

The documents in the above links are very long but very detailed.  Words I’ve heard used to describe the hearings include ‘complex’, ‘extremely involved’, ‘complicated’ and ‘very difficult’.  The decision documents are just that too.  Presumably to deter people from reading them in full, and in detail.

After you died, over 5 years ago in December 2007, there were lots of investigations and reports written, some of which I have never been allowed to see.   No matter how hard I’ve tried, the words written have all been kept behind closed doors, far away from the eyes of those who cared about you.  We, your family, have never been granted access to the full reports of the investigations by Islington local authority.

It was on 1st October 2008 that I first referred these nurses to the NMC.  The hearings at the NMC began on 6th February 2012 and concluded almost 15 months later  on 19th April 2013.  Once I had been called as a witness and had given my evidence, I attended every single day as an Observer.  So I observed and heard every single word spoken in public.

Needless to say, I’ve heard things said that I have never known about.  I never knew before now, for example, that the care home manager Sheila Ali had been in Lennox House all day on 7 December 2007 without bothering to come to see you or to dial 999, even though she had apparently been alerted to the fact that you were in spasm for long periods, unable to speak, unable to swallow, unable to move.   She didn’t care.

She didn’t care much for those residents mentioned in this article in the Daily Mail in August 2008, bearing the gruesome title ‘Care home boss suspended after dead bodies of two pensioners ‘are left for days’.  That was 8 months after you’d died.

It goes without saying that there were many other revelations at the hearings too.  No wonder we have never been allowed the full knowledge of your last days.

It’s been extremely difficult for me to sit through those sessions, but I owed that to you and I had to represent you.  It was the only thing I could do on your behalf and in in your absence.  Your voice was taken from you by  Care UK and its so-called care home, Lennox House.

I’ve found it hard to be told, by the legal representatives of the nurses involved, “You have no need to be here” – “These proceedings are nothing to do with you” – “You are not involved in these proceedings”, and so on.  I had every need to be there; the proceedings had much to do with me and with you; I will always remain involved.  There’s more I have to tell, and tell it I will.  Honestly, openly and transparently.

They took away your voice.  Nobody took away my presence.

Care Circus is back in town next week

Well, here we go again.

Next week the Care Circus is back in town.

The latest batch of NMC hearings is about to stir its loins again and get on with the work that it was charged with handling long ago on 1 October 2008.  That was only a few very short months after you died, thanks to the rubbish care that came your way, courtesy of Care UK and Lennox House so-called care home in Islington, London.

It was also a few very short months after I’d asked so many questions of Islington’s Mental Health Care of Older People team, and then Islington’s Social Services, and then the CQC (or CSCI as it was called back at the beginning of 2008), and the Coroner’s Office, and Islington’s Safeguarding of Vulnerable Adults Team, and  most of all of Care UK … well, you will know how many questions I asked of them all, each and every one of them.

They don’t like answering questions, do they?  Especially if those demanding but necessary questions are likely to cast a very dim and dark shadow over their (lack of) accomplishments.

Last December 2012, the NMC decided that one nurse involved in your demise should be struck off, from their register of nurses allowed to nurse in the UK.  Another nurse was delivered a 3 year caution order, requiring her to be on her best behaviour.

Next week, 15 to 19 April 2013,  the Circus is back in town.  Fifteen months after the NMC hearings first started, looking in depth at the circumstances surrounding your rapid decline, within 10 days of arrival in that so-called care home, Lennox House, and your admission to hospital in a diabetic coma.  You died 3 weeks later.

The  final 2 cases, still waiting in the wings, are to be dealt with by the NMC next week.

One case  is that of the care home manager, who is mid-way through an interim 9 months suspension order, placed to allow time for her to seek permission for a Judicial Review in the High Court, of the NMC decisions thus far.  The High Court refused permission to seek a Judicial Review.

The clowns will all be wearing their costumes.  Their faces will all be heavily disguised beneath the cake of their make-up.  They will all have their props to support them.  Their scripts will all have been written, re-written and then written again.  Edited, heavily edited, and then edited again.

You weren’t allowed to write a script of  your own, were you?  Let alone edit it.

The script of your final years, months and weeks of your life was snatched from you.  Grabbed by thugs.  The uncaring, unqualified, untrained, unmonitored, unsupervised, unsuitable thugs who were charged with the most basic and fairly simple duty of looking after you.

Next week, they will still be wearing their masks, their costumes  and their heavy make-up.

As they will continue to do year after year.  Uncaring as always.  Unkind in their presentation thus far.  Unwilling to admit that they failed miserably in their duty of care to you, for you and about you.  They didn’t care enough to care.

The chance to wear your dresses, your gentle make-up and to present your smiling face to the world was taken from you.  By the thugs of care.  The thieves of care.  The robbers of care.

HOT Care in the UK

The Francis Report calls for a ‘legal duty of candour’.  He mentioned honesty, transparency and openness too.

He may well have stolen my term for exactly the same kind of care that he’s calling for.

HOT Care.

I’ve been calling for HOT care for more than 7  years now.  As have those affected directly by the Stafford Hospital.  Cure the NHS.  Cure the Care too.

HONEST +  OPEN + TRANSPARENT = HOT

I first used the acronym HOT in my correspondence with Islington Local Authority’s Mental Health Care of Older People team, circa 2005 and many times thereafter.  I’ve called for that same HOT Care in each of my communications with Care UK since 2007 when my relative suffered at the hands of such cold care courtesy of Care UK.

Could we now find a way to move towards HOT Care in the UK?

Is it so impossible for us to expect/demand/require HOT Care?

More Alzheimer’s Society madness

There’s a lull in proceedings at present so I’ve been analysing my Blog stats and the search engine terms people use before finding me.  Fascinating reading it makes too.   The searches range from ‘fugitive nuns on the run in France’ via ‘do I have to declare that I’ve been removed from the NMC register if I apply for a job  as a nurse in a care home?’ to ‘what is a stalking horse?’ and  ‘what’s it like to work for the Alzheimer’s Society forum?’.  With a sprinkling of the obvious essay questions such as ‘describe how issues of public concern have altered public views of the care sector’ and ‘what does vicarious liability mean in nursing?’.

I’ve written  a few words about all of the above  – yes, even Nuns on the run- the alternative to residential care  – but I don’t seem to have mentioned what it must be like to work for the Alzheimer’s Society forum.  So here goes, and I confess here and now that I can only comment on the qualities you may need, Dear Searcher, rather than the reality of the life of a moderator or administrator on the Alzheimer’s Society’s Talking Point forum.

This selection of posts by moderators may give you an idea of the heartless, cruel person you need to become, if you are to succeed.

Moderator  1 starts a thread with: “Do not feed the troll. …. because they are cowards …. they never write over (sic!)  their own name and often reveal their trolliness (sic!) in the chosen ID.  ….. Trolls rarely answer a direct question – they cannot, if asked to justify their twaddle – so they develop a fine line of missing the point.” ( Mod 1 then cites Wikipedia as the source of her wisdom, so you had better change your thinking, Dear Searcher, and acknowledge Wiki as a source of wisdom.)

Moderator  2: “Thank you … we learn something every day …. 😎 …. and here was I thinking a troll lived under a bridge.”  (Sarcasm is a requirement for a successful application, Dear Searcher.)

Member interrupts this indelicate and immoderate session: “I’m just about to send you a PM (Private Message).”  (You will soon learn the power of the PM system, used and abused by Moderators galore, as they spread their message to their fan-club.)

Moderator 3: “It is my belief we currently have a troll posting to Talking Point.  This is a person who has mental health issues …. Our troll’s aim is destruction, pure and simple.  …. Make no mistake, they don’t even recognize they have a problem.  Sad but true.”  (So, Dear Searcher, you will also need to be as cruel as this moderator can be, even when she has declared openly that she has been taking medication for years for her depression.  Hardly surprising – she spends her whole life moderating the forum immoderately.  Perhaps that is another part of the job description.)

Moderator 1: “I agree with every single point you have made.  That’s why I started this thread.”  (Never disagree with Moderator 3 – that is not allowed.)

Moderator 4: “Thank you …. and thanks for starting this thread.  It’s reassuring to know the facts about trolls.”  (By now, Dear Searcher, you will realise that you need to demonstrate that you have the inner qualities of a dog, the kind of dog used for hunting foxes, now banned as a recreational pastime in the UK.)

Moderator 5: “It’s not me!”

Moderator 3 snaps rudely at a member who has a seriously ill husband and who is upset by this thread but who doesn’t know how to do quotes: “Can I ask something, B,  … because I’ve been wondering?  Do you not know how to do quotes or can’t you be bothered?”  (Rudeness is a requirement.)

Member replies to Moderator 3: “It might have escaped your notice but we, (husband) and I need help.  As do lots of others who are not so verbal as you are.  …. You do not listen!’

Moderator 3 replies to same distressed TP member: “Look, …. We have a person posting on the board who the moderators have good reason to believe is not trustworthy.  In the past, members have exchanged email addresses with this person only to be harassed by them.”

NB.  I have it on good authority that was a lie from Moderator 3, and that the person in question had never harassed anyone by PM or by email.  Moderator 3 then went on to tell more lies. but that’s what Moderator 3 has a nasty habit of doing, all in her own best interests, of course.

This unsavoury and tasteless exchange of posts, largely by moderators but with a few normal interjections by normal TP members, went on for some 70 posts or so, with mention being made by an administrator of the police almost having been called in to deal with this person’s allegedly threatening emails and PMs.  (Telling outrageous untruths is another requirement.  But of course, once you become an Alzheimer’s Society appointed moderator, you will be beyond challenge.  You will be allowed to get away with virtual murder, and there’s nothing the normal membership can do about that.  You will soon adapt to the slaughterhouse that is called Talking Point.)

These are just a few of the qualities you may need, Dear Searcher, if you are to want to apply to work on the Alzheimer’s Society’s online forum.  Surely the Alzheimer’s Society cannot be proud of allowing its moderators and administrators to post like that on what is supposed to be a forum providing support and care for its members.  The Alzheimer’s Society ignores totally the voice of the members.

But fear not, Dear Searcher, the Alzheimer’s Society received a big fat donation of more than £670,000 from Santander in 2011 to fund the online forum Talking Point for 3 years.  It pays for an annual gathering in London of the moderators, the one living  in the US, the one living in Canada, and all the others in the UK, all expenses paid, of course.

Compare and contrast that £670,000 being squandered on a sometimes sad and feeble chat-room, dominated by Moderator 3, with the fact that the Alzheimer’s Society is now planning to charge  dementia sufferers £10  to receive a befriending visit from a Volunteer Befriender.  That’s £10 per visit.   The Alzheimer’s Society says that dementia sufferers can apply for and use a Personal Budget from their local authority to pay for the visit.  That decision is not being received well be the Alzheimer’s Society’s online forum  supporters.  They are voicing their objections here. 

Funny way to run a charity.

Care in the UK – 5 years on – Part 1

Five years to the day after you died, I am now able to tell the world of the circumstances surrounding your sad death.  I’ve had to keep it fairly close to my heart for reasons that will become obvious.

You arrived at Lennox House, a so-called care home provided by so-called care provider Care UK, in Islington/Holloway, London on 28 November 2007, having spent the previous 4 months incarcerated (against my will, and against your will too) in a hellhole of an assessment unit.  Your vascular dementia was too challenging for all but you.  The extra-care sheltered housing recommended as eminently suitable for you was eminently unsuitable for everyone, with or without dementia.  Thanks to the Notting Hill Housing Group, and thanks also to Islington Council’s commissioning department who didn’t seem to know what they’d commissioned.

So, within a year of what they called ‘independent living’ but which was, in reality, ‘independent dying’, we were persuaded to agree to you and all your needs being assessed.  How wrong we were.  But we had no way of knowing, of course, that the social worker was not being HOT – honest, open and transparent.  Your needs weren’t assessed at all.  You were merely drugged up to the eyeballs, to keep you controlled.  Within 3 months – when even a couple of the staff asked us why you were there, when you were so lively, cheerful and chatty, even though you quite rightly wanted to get out of the place – you became a gibbering idiot.  We were given the big refusal when we asked what medications you were being given that could have had such a dramatic impact on you, in just a few weeks.  We persevered and discovered that you were on Buprenorphine, an opioid painkiller.  That was one hell of a kick in the teeth, for you; you’d only ever taken paracetamol before to deal with your back pain.  But your back pain turned out to be osteoporosis.  So I extend my thanks to your GPs who never bothered to look further than their noses, until we insisted on further investigation.  Not that it was severe enough for that kind of painkiller.

Then along came Amitryptiline, alongside the Buprenorphine,  and they worked their evil on you.   There was nothing we could do.  Nobody would listen to us.

We wanted to move you away from that assessment unit.  I told the social worker in August 2007 that if they kept you there for long, you would die. I wasn’t far wrong, was I? But the social worker knew best, even though she’d only known you for months of your 83 years. Aided and abetted by her superiors, kept you there, until such time as the Mental Capacity Act came into full force on 1 October 2007.  We were told that if we didn’t like the decision made – by a show of hands at a ward meeting to which we were not even invited, but people who’d met you only once were able to show their vote – we could do the other: take it to the Court of Protection.  Thanks here to Doug Wilson, Phoebe Masso and a few others who were all involved in this strange kind of decision-making in their best interests, but not in your best interests..   We started to fill in all the appropriate forms for the Court of Protection.

We couldn’t bear to see you suffer.  So we agreed to your move to Lennox House so-called care home, so called state-of-the-art ‘flagship’ care home, the way forward for dementia care.  You arrived there, in the nursing section, on 28 November 2007, awaiting a bed in the residential section.  Your needs were then not for nursing care.  Still upstanding, still able to ask us questions, still able to say that you wanted to go home.  But it was clear to us that we would never be able to achieve that for you.  We spent the first few days with you, hoping that you’d settle and be able to regain your strength, and the fighting spirit you’d shown all your life.  83 years and a bit of a great life.

We phoned daily and were told you were settling in well; walking the corridors – that was your normal, as someone who could never sit still for long.  Always doing something, always on the move, always active.

Ten days later, at 0915 on Saturday 8 December 2007, we received a phone call telling us that you’d been admitted to the Whittington Hospital’s A&E department, as you were in spasm, had a possible seizure, and that you were needing oxygen “and we can’t give her oxygen here”.  That’s what Lennox House told us.  Before we left home to head for London, I took another phone call.  This time from the Whittington doctor, telling me that we would have to make serious decisions about the degree of intervention they should take.  The A&E Consultant told me that you were unlikely to live beyond that day.

He didn’t know you, though.  You managed to cling to life for another 3 weeks, before giving up your fight.  Before you lost your fight, I began asking questions as to what on earth could have happened in the 7 days since I saw you last.

I first asked the Alzheimer’s Society for help when I first realised that something had gone seriously wrong.  They refused me any assistance at all, saying that they didn’t get involved in this “kind of thing”.  I explained that I wasn’t asking them to get involved, just to point me in the direction of help and support.  That’s what I understood the Alzheimer’s Society to be all about.  But I didn’t know then as much as I know now about the Alzheimer’s Society’s  close connections to local authorities, and to care providers.  Nor had I then been told by a couple of the Alzheimer’s Society’s representatives that they thought I was what they called a troll, who had never had any connections with dementia, with social services, with care homes, and so on.  They have continued with that kind of unkind care too.  So I extend my thanks to the Alzheimer’s Society for showing me that they don’t really care.

I decided to go it alone from then on, expecting no support from anyone, but accepting any support that came my way.  For the support that came, I will be forever grateful.  As for the support refused or contorted by lies, I will be forever perplexed.

It’s taken me 5 years to get answers to some but by no means all of my questions.  Many will never be answered because people in positions of power seem not to understand those little HOT words: honest, open and transparent.  I’ve never heard so many untruths told.  And still being told too, after all this time.  So it’s not over yet.

Two separate investigations have taken place into the circumstances surrounding your neglect in care, with 2 very different reports emerging from them.

Last week, the NMC made some decisions, about the staff employed by Care UK and working then at Lennox House.

Catherine Igbokwe was struck off by the NMC.   She will never do to others what she did to you.

Maria Rholyn Secuya (nee Baquerfo) was given a 3 year caution order by the NMC.  She will have to be on her best behaviour.

Sheila Ali, the care home manager/nurse, is challenging the decision made thus far by the NMC, so her barrister has decided to seek approval for a Judicial Review. In the interim, she has a 9 month suspension order – but that may change.

The case of Dahlia Dela  Cerna (nee Enriquez) has been adjourned until next year.

This is all available on the NMC website of Hearings/Outcomes for 17 to 21 December 2012.  Available here in the public domain.

As are these two articles that appeared in the press:

8 August 2008 – Daily Mail article here.  “Care home boss suspended after dead bodies of two pensioners ‘are left for days’.”

Yesterday, 28 December 2012 – Islington Gazette article by Meyrem Hussein here.  “Pensioner ‘is left in agony for days’ at Holloway care home”.

So, that’s where I’ve got to, five years to the day after your departure from this world.

You deserved better care.

(To be continued)

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?