Tag Archives: Talking Point

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

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.


Filed under Alzheimer's