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.

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Alzheimer’s Society online forum aka Talking Point

I am so uncomfortable with the latest posts on the Alzheimer’s Society’s Talking Point forum that I just cannot walk away today.  Much as I would like to be able to do so.

It is almost unbelievable that the Alzheimer’s Society’s main forum continues to be beyond challenge, alongside its most vocal forum Moderator, the one who is there  24/7  influencing the mindset of people here in the UK –  even though she has not lived here for more than 30 years.

Again, and again, and yet again she stifles and strangles understanding of the situations that people are posting about.  She has not lived in the UK for over 30 years now.  She has never had any dealings with the care home system in the UK. She has never had any dealings with Social Services in the UK.   She has declared that she knows nothing about dementia services in the US, where she has lived for more than 30 years now.

And yet, and yet, and yet, the Alzheimer’s Society in the UK gives her permission to influence thinking here.  Post no. 50 or thereabouts, depending on whether she deletes it by the time this reaches you.  Or it may have been sanitised and/or moved out of public view into the Tea Room.

Her latest attempt to persuade and convince and influence thinking here is that she is now “trying to think of another long term illness like dementia and coming up empty.  The truth is, dementia is unique in its time frame and its effects.”  According to her.

Utter rubbish, and so far from what she calls “the truth”.   However, it may just indicate how ignorant she is of long-term illnesses with far more devastating consequences than dementia.

This has got to stop.

Why does the Alzheimer’s Society allow this to continue? It claims to be “Leading the fight against dementia”.  I am afraid that if the Alzheimer’s Society allows this strangling forum to continue to try to brainwash people, according to moderator  Jenniferpa, it will soon be losing the fight against dementia. And losing support along the way.

She even claims to  know more about our prison system and conditions here in the UK, than most of us do living here, in the UK.  She says that most of us here will have a relative or a neighbour or someone we know who has come to be in prison, here in the UK.  But that’s also been sanitised now, and hidden from public view in what the Alzheimer’s Society calls the “Tea Room”.  If you find your way into the Tea Room you may need more than a cup of PG Tips.

What should be more of a concern for the Alzheimer’s Society is that she does not even know the difference between “NHS Continuing Care” and “NHS Continuing Healthcare”.  A vital difference between the two, and yet the mainly vocal moderator is allowed to pontificate about it all, thereby misleading  people, confusing people, and diverting people away from vital information.

Does the Alzheimer’s Society know the difference between the two?  If not, why should we allow  the Alzheimer’s Society to allow so many people to be misled, misguided and mis-informed?

To use one of her favourite phrases “Could I just point out …” that the Alzheimer’s Society’s Talking Point online forum is not serving its members well.

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Care in the UK – 5 years on – Part 5

The day of your funeral arrived.   It took place late on a cold and dark January afternoon.  It was always destined to be a quiet occasion because you had outlived most of your relatives and friends, so it was to be just a small family affair.  The Service was elegant and personal, with a sprinkling of your good humour and more than a dash of our family history.

Your unexpected and sudden admission to hospital and death there had caused us enormous pain.  We knew by now that there would be a full investigation into the circumstances surrounding your admission to hospital within 10 days of arriving in the care home.  We had hoped to have the time and space for our last farewells to you at the funeral.  We were not even allowed that.  Care UK chose to intrude again in death as it had done in your life.

The Service ended and we followed the Minister out of the Chapel, only to see two people sat right at the back.  The care home manager and another person had chosen to invite themselves to your funeral.  Representing the care home Lennox House and the care provider Care UK  that had failed to care for you.

One of your family had already told the manager that she would not receive a warm welcome at the funeral, so it was disturbing to see that she chose to ignore that advice and that request not to attend.  The Minister spent quite some time talking with us all before he departed, as we stood outside, almost in the darkness, looking at the floral tributes.  Strange though it seemed at the time and strange though it still seems to us, the care home manager went to her car to get her mobile phone and took photographs of some of the flowers that had been designed to reflect part of  your origins.  You’ll know the images I’m talking about here.

Little did we realise though that her motivation for attending your funeral went far beyond the usual reasons for attending a funeral, albeit uninvited and unwelcome.

You remember that ‘Complaints Form’ that I mentioned here before?  The one that allegedly came into being on 31.12.2007 when we chanced to bump into the manager at Lennox House.  Well, after the funeral service  the manager must have driven at speed back to the office, where she signed off the Complaints Form at 18:00 hours, with the words “Resolved” and making references to things that were allegedly said at the funeral.  The form indicates that no further investigation would be required by Care UK as the complaint had been ‘resolved’.  Wrong, wrong and wrong again.

The same Complaints Form made reference to things that she could not possibly have known then, because even we didn’t know then some of the things mentioned on this form and we were the first to know them, later.  Nobody else knew these facts then when the Complaints Form is supposed to have been created and completed.  Contemporaneous?  I doubt it.

But we didn’t know about all of this until July 2008.

Almost her parting words as she left the cemetery, the manager said again “We’ve taken steps to ensure that this kind of thing never happens to anybody else”.  The same words she’d used twice before and said to me on 31.12.2007.    They resemble those oft-used but empty words “lessons have been learned”.  Except that the lessons are never learned well enough to ensure that this never happens again.

I wanted to say to her that – while I could appreciate the benefits others would undoubtedly derive from those steps – they  are steps that should have been taken long before you arrived in that care home.  They’re the most basic elements of care, fundamental to a place that calls itself a ‘care home’.   The elementary fundamentals of care.  Without them being firmly in place, nobody has the right to use the words ‘care home’.

The Investigation would take its course, I said, so we should wait for that before making any comments on it all.  It was a funeral, after all, so everyone was polite, as you would expect of us.  We didn’t know then that there would be two Investigations, both of which revealed much of the same, but with one revealing far more than the other,  including many of the most basic lessons that needed still to be learned.

You only had one chance in that care home.

You deserved better care.

(To be continued)

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Care in the UK – 5 years on – Part 4

The next days were spent making arrangements for your funeral. 

I began to follow up some of the questions I’d already asked in mid-December 2007 of the Mental Health Care of Older People Team, part of Camden and Islington NHS / Mental Health and Social Care Trust.  Their social worker wrote to me the day before the funeral to inform me that she’d no longer be the allocated worker, but that her Deputy Manager would be coordinating the “on-going enquiry” into the circumstances leading to your admission to hospital. There was to be a comprehensive investigation under their Adult Protection Procedures.  I asked to be allowed to attend all meetings and to receive a copy of the Report of the Investigation.  The Deputy Manager of the MHCOP team said she didn’t envisage any problems with that request; she knew by then that I’d want and need to stay fully involved.

I’d contacted CSCI (now the CQC) on 20 December 2007, while you were still alive,  to tell them of my concerns about your care, or rather lack of it.  It took them a while to find the right department dealing with Lennox House.  CSCI had not been notified of your sudden admission to hospital on 8 December 2007,  so the inspector I spoke to said they would write to the manager of Lennox House and to me.  I heard nothing back from CSCI, so I phoned them again on 21 January 2008,  to be told that CSCI had indeed written to the manager after my phone call and that they’d received a call back from her to say that she would reply in due course. 

But CSCI  received no response from her, so they contacted her again on 21 January 2008.  That’s when I first discovered that the manager told CSCI, that very day,  that she had ‘arranged’ a meeting with me on 31 December 2007 (as I mentioned here) and that all my ‘concerns had been ironed out’ at that so-called meeting.  That is far from the truth.

Your social worker had a few busy days too, round about 20/21.12.2007, and when I received a copy of your notes (much later in February 2008) I was able to know more.  According to the notes, she’d apparently tried to phone me so many times but had never been able to reach me or to leave a message for me.  Strangely enough, many other people had managed to do just that.  I knew nothing of Adult Protection Procedures or the ‘Form AP2’ that was completed then.  Islington’s Adult Protection Coordinator was busy too, but I did manage to speak with her just the once. 

When I received your notes, sent to me on 12 February 2008, I read that the Adult Protection Coordinator had advised your social worker on 2 January 2008 – well before the funeral – that your family had the right “to request an inquest, though MHCOP would not do this”.    (They are the exact words used in the social worker’s notes.)

Why is it, do you think, that absolutely nobody at all cared enough to pass that vital piece of information to your family?  Not one person told us that we had the right “to request an inquest, though MHCOP would not do this”.  

MHCOP (Mental Health Care of Older People) were well aware that there were serious concerns about the lack of care provided to you by Care UK’s so-called care home Lennox House. 

But nobody cared enough about you or your family to tell us that we had that basic human right.  There were a few other things noted that they could have transmitted to your family too, but nobody cared enough to tell us.  In the best interests of whom was that decision made to withhold vital information from us?

According to the notes, MCHOP were faffing around trying to work out whether there was anybody available in MHCOP with the ‘capacity to conduct an investigation’.  Not wishing to be facetious, but I do wonder whether they meant the ‘mental capacity’ or the ‘physical capacity’ to conduct an investigation.  In the event, an Independent Nurse Consultant was commissioned by MHCOP to carry out the investigation and to write a Report.

The social worker signed off on 8 January 2008 and departed by writing that she would no longer be involved in your case as “the only remaining work is the completion of the POVA enquiry”.  POVA was the Protection of Vulnerable Adults.

You deserved better care.

(To be continued)

 

 

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Care in the UK – 5 years on – Part 3

This day five years ago, 31 December 2007, was a difficult one for many reasons.  I know that you won’t wish me to go into the detail of some of those reasons here.

We drove to London again and spent 4 hours at the Whittington Hospital dealing with various formalities. Most of the morning we spent in the PALS office (Patient Advice and Liaison Service) and talking on the phone with the Coroner’s Office and with one of the hospital doctors involved in your care.  We grabbed a coffee and  left at about 1 o’clock, having decided that we did not want to have to return to that part of London again in the near future.

That’s why we went – on the spur of the moment, unplanned and unannounced – to Lennox House to collect your belongings and avoid the need to go back there again.  While you were still alive, just, I’d already asked the manager to send me a copy of everything on your records.   On 20 December 2007 I received a copy of a document that Care UK calls the ‘Daily Record’ .  It was only 9 pages so I asked the manager to copy and send everything else.  It was the only document I’d seen then, but it gave a good indication of the very days when you must have been desperate for help, but no indication of any help being given.

We parked the car and were able to walk straight into Lennox House.  So much for security.  The manager was at reception, but she didn’t recognise us.  She’d only met us once before,  back in August 2007 when we went on a recce to Lennox House, just one of the care homes we looked at.  There was no reason she should have recognised us.  I introduced myself and explained that we’d come to collect your belongings.  She said she’d just been speaking with your niece on the phone and she was planning to collect your things.  It was easier for us to do it there and then, as that niece doesn’t drive.  She also said that she was just writing a note to me, to accompany the paperwork I had asked for.  I said I’d take it all with me and save her the trouble of posting it.

We went to your room, and packed your things; a few were missing, especially two rings.  I asked for them – but I was assured you had not had any rings on your fingers when you arrived in Lennox House.  It was an uncomfortable thing to hear, because we ‘d bought one of those rings, the ruby ring, for your 80th birthday.  The sapphire and diamond ring had been on your finger for the last 60 years –  more years than I care to remember.  I’d noticed you were wearing both rings when we last saw you there, in November.  Eventually, the staff managed to come up with one of the rings.  The other one never surfaced.

We went down to reception.  I was asked to go into the manager’s office, while “His Lordship” as you always called him took your things to the car, before returning.  In that office, I was subjected to an inquisition.  I was expected to go through every single line of the Daily Record and explain my concerns to the manager, as she wrote alterations on the pages.  I thought I’d already done that on the phone earlier in December, but I still had to go through it all again.  It became impossible for me, and I left the office in tears saying I just couldn’t go on with it.  We had spent 4 hours at the Whittington Hospital, and I was exhausted.

I told the manager much of what we’d been through when you were in hospital, including being asked to explain how your diabetes was so out of control.  I’d already spoken with the GP who hadn’t bothered to look at the meds you were taking, when she’d been called to the home, and who told me she was not aware that you were a diabetic.  If she had been given a list of the meds you were taking it would have been obvious to her that you were a diabetic.  If one of the nurses had told the GP you were a diabetic, she might have treated you differently.   (She’d never met you before, as you were new to the care home and new to the surgery providing services to that care home.)  Interestingly, it was only from that Daily Record that I discovered the GP had spoken with Lennox House (on 14 December 2007, while you were in hospital) before she returned my call to her that day.

The manager told me that there were no available glucose strips in that home,  because the GP does not prescribe them.  The manager told me that Care UK wouldn’t provide them either.  To say that I was shocked, again, would be an understatement.  I volunteered to pay for a year’s supply so that no other person with diabetes would ever arrive in A&E in a diabetic coma, like you did.  With much of your bloods and tests ‘deranged’ .

I’m still trying to work out why those same words about glucose strips being unavailable are written in your care home notes, in the Daily Record for 7 December 2007.  It’s such a strange few lines to have been added to someone’s personal care record.  After all, you weren’t the only resident with diabetes, so  it strikes me as a very strange addition to your records.  Contemporaneous?  I doubt it.

The manager said “we have taken steps to make sure this never happens again”.

That was too late for you.  You only had one chance.

What I didn’t know until much later (namely July 2008)  was that a ‘Complaints Form’ came into being on this day, five years ago.  Its purpose was to indicate that ‘a meeting had been arranged’ to discuss my concerns, all of which appear to have been resolved that very day.  I learned from CSCI (Commission for Social Care Inspection) that a ‘meeting had been arranged’ this day, 5 years ago, to discuss my concerns.   It must be the first ‘meeting’ where people stood to ‘discuss’, rather than sat comfortably.   CSCI asked for a copy of the minutes of that meeting.  CSCI is now the CQC (Care Quality Commission).  There were no minutes – because it was not a meeting.  It was a chance encounter.   (More about this all another time.)

I left Lennox House in tears.  This day 5 years ago.

You deserved better care.

(To be continued)

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Care in the UK – 5 years on – Part 2

This day, 5 years ago, was obviously a day of quiet reflection for us, as will be today.  It’ll give me a chance to update this blog over events while you were in intensive care.

All we could do when you arrived in hospital, on Saturday 8 December 2007, was sit with you in ITU, where you were transferred once you had been stabilised in A&E, and once we had discussed with the Consultants.  Questions were beginning to formulate in our minds, caused by the very questions we were asked by the Consultants, but it was a weekend so there was no chance of contacting the social worker or the care home manager.  We left messages on the social worker’s answering system.

The first question we were asked was to explain how your diabetes had come to be so out of control.  Our answer: we never knew it was out of control.  It was as if we were being held responsible.  Only later did we discover that, for some unexplained reason, the paperwork indicated that you lived with us, rather than that you lived in Lennox House in London.  That was our first realisation that the paperwork needed to be looked at with a close eye.  We were asked many more questions, of course, and we were told much about your condition on arrival.  Shocking was your condition.

On the Monday, still in ITU, I had a sudden thought.  The social worker had declared herself “the decision maker” when it came to deciding where you should live.  We were not even invited to the ward round meeting where this important decision about you was made.  She was “the appointed decision maker”, she said.

So, I wondered why she had not responded to my phone message.  After all, surely she should be making decisions now too, shouldn’t she, if she had taken so much power away from us, and from you.   But the social worker was conspicuous by her absence and by her silence.

Then, you were moved into isolation because it was decided you had C-Diff (Clostridium Difficile).   So you spent the next few days in isolation, with us as close as we could get to you.

Still no contact from the social worker.

We had to leave you to go to the funeral of a dear friend, and we were away for a couple of days.  I managed to speak with the social worker and with the care home manager.  I was polite but firm when I asked the care home manager to explain to me exactly what had happened in the days that I hadn’t been with you.  The social worker told me that she had asked for a report from the care home, so I asked to see a copy of it when it emerged.  I never did get to see it.   I also asked the Lennox House care home manager for a copy of every single page of the care home notes, records, paperwork that arrived with you, paperwork that went with you when Lennox House care home sent you by ambulance to A&E.

When I mentioned that you had C-Diff, the care home manager told me that you had had an episode of C-Diff when you were in Highgate Mental Health Unit’s assessment ward, just before discharge from there. That was news to me.  I said I found it surprising the care home had accepted you, and I asked why it hadn’t been mentioned before.  Her words will never leave me.  She said that it often happened that people arrived in the care home with C-Diff, but it wasn’t necessarily mentioned on the paperwork.  She said the same applied to MRSA.

To say that I was stunned would be an understatement.  I was beginning to get used to shock.

I learned that you had been seen by  a GP  – the manager said you’d been seen the Wednesday before admission to hospital.  Not true.  A GP had only been summoned  by the sending of two faxes – yes, faxes – two hours apart on Friday 7 December 2007.  But nobody declared that when the first investigation was carried out.  (More about that another day.)

You were moved out of isolation and ITU to a general ward.  You regained consciousness only briefly, and one day they managed to get you from bed to chair.  Just the once.

You spoke only two words.  “Thank you.”  The last words you ever spoke.

Tomorrow is another day – and it certainly was, 5 years ago.

You deserved better care.

(To be continued)

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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)

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The Madness of Alzheimer’s Society

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Care in the UK over two weeks in December 2012

1 December 2012: TENS of thousands of vulnerable people are being physically and mentally abused by the very people meant to be caring for them. Disturbing figures reveal that 130,000 adults were ill treated – usually at the hands of carers or family. Abuse most often took place in their own home or care home.  Read more here.

1 December 2012: Abuse of elderly patients by NHS staff rises by a third in one year with a  shocking 36,000 offences reported last year alone.  Read more here.

1 December 2012: Care home regulation criticised by Norman Lamb.  Regulation of the care sector is not fit for purpose, care minister Norman Lamb has said as he unveiled proposals on English care homes for consultation. He also said there was a “significant lack of corporate accountability for the quality of care”. One suggested measure involves companies having to open up their books to inspectors to ensure they are financially sound. Read more here.

1 December 2012: Care home companies could be forced to open books to prevent another ‘Southern Cross’ collapse.  Read more here.

4 December 2012: Care home job advertisements ‘encouraging’ criminals to apply.  Convicted criminals have been encouraged to apply for jobs in care homes looking after frail, elderly people.  Read more here.

4 December 2012: Ann Clwyd, Labour MP tells of inhumane treatment and says she fears normalisation of cruelty now rife among NHS nurses.  Ann Clwyd has said her biggest regret is that she didn’t “stand in the hospital corridor and scream” in protest at the “almost callous lack of care” with which nurses treated her husband as he lay dying in the University Hospital of Wales in Cardiff.  Read more here.

4 December 2012: Melton Court care home to be closed by Friday. The manager of a South Yorkshire care home, which has been ordered to close by Friday, says she is in talks with two potential new providers. The 21 residents at Melton Court in Maltby have to find new homes, after it emerged the owner is in prison. The Care Quality Commission (CQC) revoked Ishtiaq Zahir’s licence and said the home is operating illegally.  Read more here.

5 December 2012: A PENSIONER with Alzheimer’s died after she plunged down a lift shaft when the door was left unsecured, a court heard yesterday. Annfield Plain company faces health and safety charges after tragedy.   Read more here.

5 December 2012: Wrexham – Concerns over care at mental health hospital.  Read more here.

6 December 2012: Leicester – Dementia sufferer ‘left in agony’ at George Hythe House care home in Beaumont Leys, court hears.  An 89-year-old dementia sufferer was left in agony for four hours with a broken thigh  because a care home supervisor could not be bothered to assess her, a   jury heard. Sarah Bewley was “too busy” doing paperwork to see the woman after she suffered a fall, despite several requests from a care assistant, it was claimed.  Read more here.  See below.

7 December 2012: Regulator moves closer to setting up ‘negative register’ of adult care staff.   If the proposals are approved by government, a national code of conduct would be applied to workforce and the HCPC would consider serious complaints made about individual professionals; any decisions to uphold a complaint would be made public, as would the resulting sanction.

A “negative register” would be maintained of those found unfit to practise.  Read more here.

7 December 2012:  Leicester – Jury clears Leicester care home boss of neglect charge.  After the not guilty verdict was announced, Judge Lynn Tayton QC said: “This case raises very worrying issues, particularly concerning systems that seemed to be in place which created a situation in which no-one took responsibility for the care of this lady.  “She was left in severe and unnecessary pain for a number of hours.”I hope those in charge of the home have looked at the systems and the staff training.” Read more here.

7 December 2012:   Chorley, Lancs – A care-home worker and her husband who subjected  their children to years of horrific abuse were facing jail yesterday after being  convicted of cruelty.  Read more here.
8 December 2012: Wolverhampton – An investigation has been launched into safeguarding at a care home, which helps people with mental health, drugs and alcohol problems.  Read more here.
8 December 2012: Derby – A national health watchdog has issued a damning report on a privately-run Derby care home.  The Care Quality Commission has told the company  that owns Cleeve Villas Nursing Home, in Wilson Street, to do more to protect the safety and welfare of residents – or face legal action.  Among the problems identified were:
  • No organised stock control system of medicines
  • Failure of staff to update crucial medical documents
  • Care plans reviews not completed on time
  • Failure to ensure prescribed medicines were always available
  • Medicine doses not being documented, meaning it was unclear whether medications had been administered
  • No appropriate systems in place for the safe disposal of medicines when they were no longer required.

Read more here.

Read the CQC report on Cleeve Villas here.

That list of failures is just the kind of thing most people don’t know about, so  awareness raised to the top is what we need in the world of care.

When it comes to the comment made by the spokeswoman for Cleeve Villas Care Services : “As a dedicated provider of care services, we at Cleeve Villas have taken on board the suggestions from CQC as to how to enhance our overall performance and have already taken steps working with a specialist healthcare consultancy to address these.”Our aim as always is to ensure the individual and complex needs of our residents are met.”

I don’t believe you.  Yet.  This is not the first CQC detailing same/similar problems.   What has taken you so long to show that you care enough to provide good quality care?

9 December 2012: Vulnerable care home residents are treated like “brutes or malfunctioning machines”, said Hilary Mantel, the author, as she spoke of the “utterly depressing” search to find accommodation for a disabled friend.  Read more here.

10 December 2012:  We haven’t a clue how much a care home will cost us.  The vexed question of how we pay for the care needs of Britain’s ageing population rears its ugly head so often that it is no wonder everyone thinks it is a pain in the neck.  Read more here.

10 December 2012: Star ratings: Families need reliable information on care home performance.  Read more here.

10 December 2012: Preventative care for elderly under threat.  Services have been cut or frozen by two-thirds of local councils since coalition came to power, according to ComRes study.  Read more here.

10 December 2012: A Birmingham care home is being investigated by council and health bosses amid  allegations of neglect.  Bramley Court Care Home, in School Road, Yardley Wood, is facing the probe  after a complaint was made about the standard of care given to elderly  residents. New admissions have been suspended while a joint investigation is carried out  by the city council and NHS Birmingham and Solihull.  It is not the first time the home has been in the spotlight over its  treatment of residents. In August a report by watchdog, the Care Quality Commission, found residents  were being put at risk of not receiving adequate food and drink.  Read more here.

10 December 2012: Winterbourne View scandal prompts new care guidelinesReport warns that care sector risks slipping back into institutional culture typified by Victorian asylum system.

The report warns that, elsewhere, staffing cuts caused by reduced fees paid to care providers are causing residents to be left alone for hours at a time and are fostering excessive reliance on use of drugs and on physical restraint, “often for minor perceived misdemeanours”.

Brendan Sarsfield, Family Mosaic’s chief executive, said: “We would argue that if providers don’t believe this has ever happened in their services, it just may be that they haven’t looked hard enough.  Read more here.

10 December 2012: Care home provider Family Mosaic has warned that the care sector is in danger of slipping back into the institutional ways of the past and is urging care providers “not to be complacent” and be vigilant for danger signs of abuse.  Read more here.

10 December 2012: Winterbourne View scandal: Government rethinks use of hospitals.  Norman Lamb said “”We need to have a situation where people who run care organisations – public or private sector or voluntary – know that they are accountable for the services they provide and there are consequences if they don’t.”  You can’t argue with that so let’s home he brings about accountability.  Read more here.

12 December 2012: Copthorne, Sussex – Care home boss suspended over death of patient.  A care home manager has been suspended by the Nursing and Midwifery Council over allegations she shredded a document to cover up a mistake which led to the death of a resident. The resident of  Orchid View care home in Copthorne was given three times the prescribed dosage of Warfarin, a drug used to prevent blood clots, over 17 days in 2010. Read more here.

12 December 2012: Stockton care home boss denies a catalogue of failures.  Meal times at the home were “appallingly organised” and 15 out of 17 patients  lost weight over a one-month period, the Nursing and Midwifery Council heard.  Read more here.

12 December 2012: York care home warned to make urgent improvements.  The Care Quality Commission has issued a formal warning to Mimosa Healthcare (No 4) Limited, which is the registered provider of Birchlands Care Home, that they are failing to protect the safety and welfare of the people using the service.  Read more here.

12 December 2012: Wall Heath care home told to shape up or face enforcement action.  The Care Quality Commision (CQC) is demanding an improvement in the standards of care at Holbeche House after inspectors found failings during an unannounced visit in October.  The Wolverhampton Road home, which is run by Four Seasons (Bamford) Limited, was found to be below standards for the care and welfare of service users and assessing and monitoring the quality of services.  Andrea Gordon, deputy director of operations (central region) for CQC, said: “The law says these are the standards that everyone should be able to expect. Providers have a duty to ensure they are compliant.  Read more here.

12 December 2012: Nurse at Rodborough care home slept with vulnerable female patient and invited another to swingers’ parties. Trevor Rice, a senior triage mental health nurse at Park House Mental Health Resource Centre, was formally removed from his post by a Nursing and Midwifery Council disciplinary committee on November 23.   Read more here.

12 December 2012: A bungling nurse who was cleared to work in Sussex despite making a number of shocking errors is being investigated for a second time.   Nicanor Sindanum made national headlines after he was allowed to continue to work as a nurse despite being found guilty of 17 serious errors by a nursing panel while working in Scotland.   In June this year a nine-month banning order imposed by the Nursing and Midwifery Council (NMC) in September 2011 was revoked and replaced with conditions of practice order.  This meant that, despite his failings, Sindanum was allowed to start work for an Eastbourne care home so long as he told bosses that he had restrictions placed on him. But now it has emerged that Sindanum faces a second investigation for alleged failings dating from 2009.  Read more here.

13 December 2012: Slyne-with-Hest, Lancashire – Four people have been charged with offences under the Mental Capacity Act 2005 following a police investigation into the mistreatment of residents at a care home in Slyne.  Read more here.

13 December 2012: Wales – More should be done to reduce Wales’ reliance on using care homes as a way to look after older people, says a group of Assembly Members.  The assembly’s health committee has backed moves to help people keep their independence for as long as possible. Families need simple and accessible information about the options available for elderly relatives, it said. It pointed out that many elderly people who pay for their own care were unaware of the help available to them.  Read more here.

13 December 202: Panshanger, Welwyn, Herts -Massive arrogance’ jibe as ‘out of scale’ care home plans thrown out.  Read more here.

13 December 2012: Morpeth, Northumberland – Coroner hits out at care of woman in Morpeth home.  Mr Brown, recording a narrative verdict, yesterday concluded the fall “did  play a part” in Mrs McEwan’s death as the fractured femur caused immobility  which made her more susceptible to the fatal complaint. The coroner also found three serious failures in the care of Mrs McEwan.

He ruled senior carer Stephanie Wilson had left Mrs McEwan’s bed in an  elevated position, moments before she fell while trying to get into it.

Furthermore, Mr Brown said staff had failed by phoning a doctor’s surgery  instead of an ambulance after the fall, even though Mrs McEwan was in obvious  pain and in need of such care immediately.

Finally, the coroner said workers had been wrong to lift Mrs McEwan back on  the bed, saying they should have left her where she was comfortable until the  ambulance arrived.

Mr Brown nevertheless accepted that staff had been misguided and in need of  better training rather than motivated by malice.  Read more here.

13 December 2012: Croydon  – Are Croydon care homes up to the job of looking after borough’s most vulnerable?  Nearly a third of care homes in the south of the borough are failing patients and residents in one or more key standard, an Advertiser investigation has found.

Campaigners for better care say the findings paint a “dire” picture for sick and elderly people at a time when savings in care provision are set to be enforced.

Among those that are failing in one or more key standard are homes which charge elderly people up to £800 a week.

Stuart Routledge, chief executive of Age UK Croydon, said: “It is appalling that any nursing home should fail to protect the dignity and respect of their patients and residents.

“This survey underpins the urgency for social care funding reform so that those older people who struggle daily with chronic ill health, frailty and disability have the peace of mind that they will be well cared for at their time of need.

“In particular, this shows the dire consequences of a social care system that has been under increasing financial pressure over the last eight years and in many areas is now financially stripped to the bone.

“Staff across health and care services have a professional and moral duty to make sure the dignity of their patients and residents is enshrined in every action. This means involving people in decisions about their care, providing care that treats people with respect and helping people to be as independent possible.”

Read more here.

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The Alzheimer’s Society – Sick Joke?

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

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

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

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

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

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

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

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

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

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

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

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