The Verdicts Out - Its Bad News !!!

germain

Registered User
Jul 7, 2007
342
Hello all,

Just read on the BBC website that the court has agreed with NICE (with a couple of reservations)

Is this the end or can we do more ?
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Not what I heard, (11 am on ITV). They said that the court had ordered a review of t NICE's judgement.
 

germain

Registered User
Jul 7, 2007
342
Quotes from the BBC news website

"Campaigners failed in a bid to force the NHS to fund Alzheimers drugs in people with early stage disease. However NICE has been told to re-write guidance on how the disease is assessed. The court upheld NICE's decision that the drugs are only effective in later stage disease"

I just wish I could have told the court how my Mum got 4 years of her life back because of reminyl !!!
 

said

Registered User
Jul 4, 2006
643
London
Hi all

We do not yet know the outcome of the Judicial Review of the NICE decision to restrict access to Alzheimer’s drugs to those in the moderate stages of Alzheimer’s disease.

We understand that the decision is currently being read out in court.

We realise that there has been reports about the judgement on the BBC website, but these have not yet been confirmed by our solicitors and staff at the court.

As soon as we have confirmation of the judgement, we will update the home page.

Said
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Just checked both wesites, Germain. ITV haven't got their version up yet, we'll have to wait for the lunch-time news.

Isn't it amazing that they can interpret things so differently? It was all good news on ITV.

I agree about Reminyl, John had six good years which we might not otherwise have had.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
ITV have backpedalled on the 1 o'clock news. Guess it's bad news after all!:(

You can leave comments on the ITV website. Huh!!!!!!
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Thanks, Said. It's so disappointing.

And painful, too, that the views of hundreds of carers have once again been ignored. I guess they know that we cannot possibly go on strike!
 

Margarita

Registered User
Feb 17, 2006
10,824
london
:(

at lest the Alzheimer's society did try they best

strange that it has be unlawful , discriminated
'Today we have won the very important point that NICE guidance is unlawful because it discriminated against significant groups of people.
and NICE can still withhold medication back

The campaign goes on :)
:)
 

DickG

Registered User
Feb 26, 2006
558
84
Stow-on-the-Wold
The outcome of the review confirms what I have always thought that politicians will profess support but at the end of the day they hide behind the decisions of quangoes they appoint.

The government has ultimate reponsibility and only they can order NICE to review their decision. So that is that.

Dick
 

Margarita

Registered User
Feb 17, 2006
10,824
london

Tash

Registered User
Jan 8, 2007
251
39
London, UK
Margarita said:
I am finding it very confusing as the above quote is on the AZ society main page
Hi Margarita and all,

I've just got some information from the policy and campaigns team which will hopefully clarify this.

Basically, what happened is that the Society challenged NICE on three grounds:

1. The guidance discriminated against people with learning disabilites, language difficulties and people whose first language is not English.
2. NICE had failed to evaluate carer benefit adequately.
3. NICE failed to adequately assess the costs of long term care.

The Judge found in favour of the Society on the ground that the guidance was discriminatory against specific groups of people (points 1). She found in NICE's favour on all other grounds (2-3).

About the winning point (point 1):

The Judge found NICE's guidance was unlawful because it discriminated against people with dementia who have a learning disability, with language problems or who do not have English as a first language. In short she found that they had breached their obligations under the Disability Discrimination Act and the Race Relations Act. She ordered them to amend the guidance to reflect this and to communicate the changes to doctors and other interested parties.

What does this mean for people with early stage Alzheimer's?

Unfortunately the JR result does not mean that NICE will be forced to reconsider their guidance at this stage. This means that the recommendation from NICE is still that people should not be prescribed dementia drugs in the early stages. However, doctors still have the right to exercise their clinical judgement and prescribe where they think it is appropriate.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Tash said:
However, doctors still have the right to exercise their clinical judgement and prescribe where they think it is appropriate.
Thanks for the clarification, Tash.

I think the above point is worth stressing, and really hasn't been made clear before.

If the carer really wants the drug, and is prepared to argue their case, many consultants will prescribe it. Although they have to go along with it, many consultants do not agree with the NICE guidelines.

(Sorry, can only speak for Scotland really. I'd be interested in others' experience.)

PS. The problem, here at least, is that if the consultant prescribes the drug he has to be able to justify it to the PCT. One of the possible justifictions is carer stress.
 
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Nebiroth

Registered User
Aug 20, 2006
3,511
Part of this is because NICE places so much emphasis on what "stage" in dementia a patient is on...

But as we all know, there is no real way to "measure" dementia. The MMSE is a useful tool, but nothing more.

It makes far more sense for an experienced clinician to exercise their judgement and to take into account the opinions of carers.

For example, my dad did quite well on the MMSE - in the low twenties - and by that definition would fall outside of the NICE guidelines.

But at the same time, he would forget where the bedroom was, insist it was "morning, it;s dark outside because you're using American time", be wondering when his long deceased mother and sister would return home from the shops, and would ask me who I was and where was Richard, his grandson ( I am Richard, his only son, with no children of my own).

Arciept stopped virtually of that behavior. But NICE would argue that he shouldn't have had it as he wasn't bad enough.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Thank you for taking the time out to clear that .

1. The guidance discriminated against people with learning disabilites, language difficulties and people whose first language is not English
whose first language is not English
when they done Ist MMSE on my mother on returning to england no one ask if my mother English was not her first language .

Mind you my mother was already give Exbixa in Gibraltar , so I was worried that that they would not give her the medication on the NHS in England , but they did



Our doctor is also a consultant

is that if the consultant prescribes the drug he has to be able to justify it to the PCT.
the memory nurse said that if PCT pulled the funding that they give our doctor , then my doctor would not of been able to give it to my mother .

now year half on I can see how he could of justify it , she would of just drop , costing them more money in caring for my mother in care home .

Glad that my mother got that medication now , just proving to me what a better quality of life my mother has , compared to if she was not given exbixa , took me to see the program barbara john to really sink in the reality of AZ .

because they for the grace of god , could of been my mother .

Mum was lucky that it working so good for her, and was given the choice to take it .


2. NICE had failed to evaluate carer benefit adequately.
That so true , compared to 2 pound fifty pence' that a tablet cost , then how much it would cost in care home [late stage medication] most be more economic
 
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