Tag Archives: Alzheimer’s Society

Alzheimer’s Society and the Horse fraternity

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A virtual Queen of the World.


Filed under abuse, accountability, dementia

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.

1 Comment

Filed under care, dementia

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)


Filed under care

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.



Filed under dementia care

The Alzheimer’s Society – Sick Joke?

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

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

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

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

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

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

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

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

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

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

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


Filed under abuse, care, dementia, dementia care

Alzheimer’s Society – a peculiar kind of charity?

There’s a disturbing piece in the current issue of Private Eye (No.  1284; 18 March 2011 – 31 March 2011; ‘In the Back’ section; page 30) about the Alzheimer’s Society.

The article’s not available online, only an online taster:

Dementia Care – Fear and loathing at the Alzheimer’s Society as volunteers reject the charity’s new-found “professionalisation”, saying it ignores local needs.

According to the article, volunteers who have been fundraising for years via local Alzheimer’s Society branches are now leaving to start their own breakaway groups.  It would appear that the Alzheimer’s Society decided to abolish 240 branch committees, merging them into large regional centres, and the Society has apparently seized control of all the funds within those branches, and also the branch property.

If the content of the Private Eye article is accurate – and it is rare for The Eye to get it wrong! – it is shocking.

The Eye states:

In addition, some members who challenged decisions of their new managers were treated appallingly, sometimes locked out of the premises they had run for years.

One is Ernie Thompson, who started the Sunderland branch in 1987 and chaired it until it had an annual turnover of around £400,000.  His reward for years of unpaid work?  Changed locks and “everything ransacked and seized”, he says.

So much for charity!  David Cameron must  be invited to say whether this strange action on the part of a dementia charity falls within or without The Big Society.

No wonder Fund razing is Private Eye’s chosen headline.


Filed under dementia, dementia care

Anti-psychotics and vulnerable elderly people in care

This week’s BBC Panorama programme What Have The Drugs Done To Dad? has caused more questions than it answered for me, in some  ways, and it’s left me with a feeling that we really could do better, if we cared.

The programme began with the statistic that 180,000 people with dementia are being given – as a matter of routine – powerful anti-psychotic drugs which in the majority of cases harm them and may be shortening their lives.  It was described as the scandalous abuse of some of the most vulnerable people in our society.

I must add a qualification here: some people are content that their relative with dementia is being prescribed anti-psychotics, both in residential care and in their own home.  It is not my purpose to deny them the right for that to be seen as appropriate in their own circumstances.  But the programme’s purpose was to look at the inappropriate over-medication of people in care, and the over-prescribing of anti-psychotic meds that were never designed or legally licensed for dementia.

Paul Burstow, Minister for Care Services, used the words ‘shocking’, and ‘unacceptable’, stating that these drugs kill people, cutting their lives short once they have already reduced the quality of their lives.  I have no reason to doubt Professor Sube Banerjee’s assertion that the drugs are being used much too often and much too freely.  If their use is beneficial in only one-fifth of cases, it’s serious cause for concern.

I have no personal family experience of the use of such powerful anti-psychotics for people with dementia, but I do have personal family experience of powerful drugs being prescribed for my own relative with dementia, and with a few other physical problems that were causing pain and distress.

Like Cheryl Byrne and Glynne Thompson who appeared in the Panorama programme, I too noticed a dramatic decline in the general well-being of my relative – even though I had no idea then what had been prescribed.  Within a matter of weeks, all conversation stopped; there was a huge change in awareness and sociability; posture went from upright to stooped; the ability to engage with anything at all was non-existent; agitation; insomnia; disinhibited behaviour; and the remains of what once was a definite joie de vivre went right out of the window.

My request, in the mental health assessment unit, to be allowed to know which medications my own relative was being given, was met with verbal abuse by the deputy in charge of the ward. No matter how much I explained that I was shocked to see such a huge decline in such a very short space of time, the brick wall of refusal came my way.  She refused to give me any information at all, even though I was listed as one of only two close relatives still alive and caring about a very vulnerable elderly person with dementia.

It was only after the death of my relative that I discovered – when I obtained a copy of the medical  records – that a doctor had written into those notes “this is a massive amount of NSAIDs and anti-depressants for a frail elderly person”.  They had prescribed  an opioid drug to control the pain and the patient.  Then, the anti-depressant was introduced to someone who had no history of depression at all – it was prescribed as a way of controlling the manifestation of ever increasing physical pain, discomfort and distress.   It made it easier for the staff in the mental health unit to manage – they could then manage to huddle round and watch TV, rather than needing to interact with their patients.

Neither the opioid drug nor the anti-depressant controlled the pain.  Did they control the patient sufficiently in the best interests of the nursing/care staff?  Did they contribute to a sudden death?

After watching Panorama, I looked around for more information about the use of anti-psychotics to control, to quieten, to make manageable those vulnerable elderly people with dementia and living in care homes.  What did I find?  This from the Alzheimer’s Society dated 3 December 2007, which was when Panorama last looked at the abuse of elderly people in residential care homes by over-medicating them.

Neil Hunt, then Chief Executive of the Alzheimer’s Society, said:

Today is D-Day for dangerous drug prescribing.  Sedating a person with dementia should be a last resort but too often doctors are turning to the medicine cabinet without considering the alternatives.   Today Panorama is shining a light on the widespread drug abuse of people with dementia, which has been hidden away for too long.  The first parliamentary inquiry into the practice is also an important step to uncovering the true scale of the problem, and we look forward to its findings.

Over 100,000 people are being prescribed these drug treatments that leave people with dementia in a zombie like state, robbed of their quality of life.   Research shows that anti-psychotics have minimal benefit and drastically increase the risk of death and stroke. It is absurd that we are wasting millions of pounds prescribing these drugs when this money would be much better spent training health professionals in dementia care.

Dementia isn’t only about memory loss; more than half of all people with dementia experience behavioural symptoms as part of their condition.

But I can’t find a statement from the Alzheimer’s Society commenting on this more recent  Panorama programme.

Three years on from 2007, when the Alzheimer’s Society called for an end to the widespread drug abuse of people with dementia after the 2007 BBC Panorama programme, we are now promised that within another year, by November 2011, the use of anti-psychotics prescribed to people with dementia will be reduced by two thirds.

Why should it take so long?  How many more people will have died before action is taken?

And finally, for anyone with an interest in the shocking statistics of medication abuse of vulnerable elderly people in need of care, click here for a read of this document from 31 March 2008, which also bears the name of Paul Burstow, then in  Opposition  and MP for Sutton and Cheam:

Keep Taking the Medicine 4 The scandal of the inappropriate medication of older people in care

Had it appeared just one day later, it would have appeared on 1 April.

No excuse for lack of action is acceptable, said Paul Burstow in Opposition.  He’s been arguing his point since 2001, and probably before that.  He was lonely in the House of Commons then – nobody listened to him, championing in debate the cause of vulnerable elderly people.  Now that he’s in Government and Minister for Care Services, he says that he stands by that statement, it is now his mantra,  and he nodded when told that he would be held to account in the future.

Please widen the scope of your concern, Mr Burstow.  Look at the abusive over-medication of elderly people, especially those with dementia and in care, in its entirety.   In fact, widen the scope of your concern to the abuse of elderly people with dementia in care.  Full stop!

Nobody listens to us either, so you should know how we feel.

Let’s hope that you are not Home Alone now, and that people listen and act.

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Yvonne Hossack, Memory Lane, SPECAL, David Sheard, Delhi and Scotland – a mixed bag of goodies!

The London Marathon kept us occupied on what was a very wet Sunday morning here – only a virtual marathon, as watching and listening to it on TV is not the same as taking part, but I know my limitations!   The aims of all the fund-raising fun-runners, not to mention the challenges they set themselves on behalf of others, are always uplifting and positively encouraging.  So I thought I’d do some virtual searching for good news, especially good news about elderly care and dementia care, and I’ve managed to find a couple or three.

Solicitor  Yvonne Hossack, dubbed the Erin Brokovich of care homes, is  a candidate in the forthcoming General Election, standing for Stockton South as an Independent candidate. She has been a tireless campaigner over many years, striving to improve the lot of elderly people in care, and she has successfully fought care home closures.  There have been many attempts to silence her, but fortunately she refuses to abandon her strong belief that the elderly deserve decent care.   Nobody can argue with that.  Good luck, Yvonne.

Then I came across an old article about person-centred dementia care.  At first glance, it reads like a plug for Barchester Care Homes, but so much of it is the most basic common sense, it really does force you wonder why  such common sense is not always a feature of care homes.  So it’s good news that someone is hopefully putting in place person-centred dementia care.   A photograph album full of memories was the very first thing I put together for my own relative with dementia, when she first needed what I will call ‘a bit of support’.  I didn’t then put  name captions to the photographs, because she could name every single person and place, right back to 1930, even though she couldn’t remember whether she’d had her breakfast that day, or even what day it was.  Name captions were added to the pics when she went into residential care, so that the support workers would be able to use it with her.  That was my hope.  (If only!)

That article mentioned ‘Contented Dementia’  written by Oliver James, describing Penny Garner’s work with dementia and the SPECAL (Specialized Elderly Care for Alzheimer’s) approach to dementia care.  Again, much of that book is basic common sense and for a ‘beginner carer’ it gives encouragement and it reinforces many of the instincts you have to draw on, when trying to help and promote the well-being of a person with dementia.   The Alzheimer’s Society doesn’t approve of SPECAL, saying it ‘takes away choice and control from people with dementia, its ethos is counter to the Mental Capacity Act and it claims to offer the only alternative approach to caring when in fact it is one of a number of approaches‘.  When I read the book, soon after it was published,  I didn’t feel that it was claiming to offer the only approach – just one single approach.  (Why does the Alz Soc use the word ‘alternative’?  Alternative to what?)  The Alzheimer’s Society implies that SPECAL involves telling lies to people with dementia.  I’ve tried to work out where the ethos of SPECAL is counter to the Mental Capacity Act and I’m at a loss to understand the Alzheimer’s Society’s position, in spite of having read (several times now) the MCA cover to cover for various reasons.  Early in my own dealings with dementia, I realised that I was causing stress and distress to my dementia-sufferer if ever I corrected the ‘false beliefs’ that were expressed to me.  But if I went along with the flourish of ‘old memories’ as if they had happened yesterday, then the stress and distress was minimal.  It led to fewer tears, less confusion and more contentment.  QED: give it a go!

Back to my virtual hunting for good news:  I then came across David Sheard – more of that please!!  If every single care home, dementia-registered with the CQC, could be required to undergo (before receiving residents) the kind of training that David Sheard offers – what a difference that would make to dementia care.

I’ve been searching for good news on the dementia day care front.  Delhi is to have its own day care centre for Alzheimer’s – good news for India’s 6 million Alzheimer’s sufferers.  Staggering statistic.

And finally, from Scotland, news from the Dementia Services Development Centre –  which cheered me, for some reason.  Perhaps because I’ve not found anything similar elsewhere in the UK.

More  good-news-research to be done another day.

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