At Last N.I.C.E is brought to court

Replies

By SocialHeretic

Re: At Last N.I.C.E is brought to court
Tue 26 Jun 2007 14:03

Seconded ...... whatever the government spends our monies on is a politicial decision ..... when denying it's citizens potential life saving \ expanding medications , and support services , that's social injustice.

By Shldvds

Re: At Last N.I.C.E is brought to court
Wed 27 Jun 2007 06:02

I agree with all that you say, Jay. This drug should be made available for anyone who needs it regardless of cost or how long the effect will last. If there is any chance at all that it will help improve their quality fo life in any way make it available.
Sheila.

By jeanette

Re: At Last N.I.C.E is brought to court
Wed 27 Jun 2007 09:02

Page 17 of the most popular daily newspaper!!
CARERS DO NOT COUNT IN ALZHEIMERS DRUG VERDICT ,SAYS RATIONING WATCHDOG!
so there ..you know now how important we are to this government!! We lose our C.A when becoming pensioners ,and only save this country at least 57 billion pounds per year in our caring roll, Drugs which could help us as well as our carees are refused for early stages of dementia and of course other diseases too ,and people who also have learning disabilities do not seem to come in the equasion at all! Where is the justice and where are our MPs who should be battling for us?? It seems quite wrong to me that a major charity should be having to help fund a fight ,when that money could be put to use by supplying help and care to all ages of people in all types of dementia!!
My thanks must also go the THE paper for raising money and awareness of our plight!!
Keep up the good work please!! THE DAILY MAIL!!

By mag

Re: At Last N.I.C.E is brought to court
Wed 27 Jun 2007 10:07

I totally agree with what has been said - it really is a scandal that those who make decisions deem that £2.50/day is too expensive for what is potentially a life changing drug for dementia sufferers and those who look after them! £2.50 wouldn't pay for a snack for a hardened criminal in prison, neither would it go very far in treating drug addiction! How dare they deny help to those who have had no choice in the matter of illness!

Thankfully, there are those who will raise awareness and fight for a deserving cause.

Mag

By heather

Re: At Last N.I.C.E is brought to court
Wed 27 Jun 2007 12:16

A dear friend of mine, whose much loved husband suffers from Alzheimers, age only 61, gave me a different point of view on all this. Because she is a doctor and 'knew all the right people and how to do it' she got all the drugs for her husband and the progress of the disease slowed down for about 6 months.

However for her, her beloved husband 'died' a couple of years ago and what she has in its place is a frankly rather unpleasant stranger who shares her home and her bed. She now wonders very much if she did the right thing trying to extend the progess of this disease, given the lack of quality of life for her husband and the devastating effects on herself and her young family.

I had never thought of this like that before and thought I would share it. It is 20 years since I cared for someone with dementia; its by miles the most difficult thing I have ever done and I just think we ought to be willing to hear all points of view, however controversial they may seem.

By jeanette

Re: At Last N.I.C.E is brought to court
Wed 27 Jun 2007 12:36

hi Heather ,I may be wrong but have never read these drugs are life savers ,but quality of life 'savers' so your friend was infact helped by having an extra 6 months with her 'real' husband. Others have said the benefit of these drugs last as far as five years ,but each individual is different!! If you had been talking ..antibiotics ,then that is another 'ballgame' altogether!!.What I do know is that there are supposed to be other forms of help available, but in my situation (very young person with L/D and dementia) there isnt!!
the word alzheimers is continually used ,but that is only one of many forms of dementia,but these drugs can be used for all types as far as i know. (but there again might be wrong)
would love a hosted chat on the subject!!
I do agree with you all sides should be heard!,but who is going to do anything practical about the problem? Will it make any difference to the Caree or the carer? At this moment of time ..I doubt it!!

By lulu

Re: At Last N.I.C.E is brought to court
Wed 27 Jun 2007 17:09

I believe it is about "quality of life" that matters.
I was asked to let you know about one MP who is trying hard to change things.
We are very grateful that he is a member with us in chill4us.
best wishes and good luck to all who are fighting.
Wendy

"A Norfolk MP is to have a showdown with health bosses next week in a bid to end drug rationing in the NHS.

Dr Ian Gibson will meet board members from the National Institute for Clinical Excellence (Nice), the government watchdog which makes decisions on which medicines are available for patients.

Dr Gibson said: “I want to see an end to all this drug rationing in the health service. I will be meeting board members to see if we can get funding for drugs. To me it is simple - if a patient needs a drug that will make them better, or at least relieve some symptoms, they should be able to get it.

“I understand they have to work on a budget but I want to see if we can get secured government funding so no drugs are withdrawn.”

Dr Gibson will speak about medicines for Alzheimer's, bowel cancer, brain tumours and bone cancer myeloma."

tinyurl.com

By SocialHeretic

Re: At Last N.I.C.E is brought to court
Thu 28 Jun 2007 08:23

Long but worth it :

NICE ignored thousands of patients who said Alzheimer's drugs had transformed their lives

By SAM GREENHILL

22:00pm on 27th June 2007

Health officials who banned funding for Alzheimer's drugs defied evidence from 11,000 sufferers and carers - their highest-ever response to a consultation.

Despite asking patients for their opinion and being swamped with thousands of moving testimonies of how the drugs had dramatically transformed lives, they failed to be swayed.

Instead, the High Court heard, the £2.50-a-day tablets which alleviate the devastating symptoms were declared not cost-effective and banned last year in England and Wales, while remaining freely available in Scotland.

It means 100,000 new Alzheimer's patients a year are denied funding for the drugs which can slow the cruel decline into dementia.

Alzheimer's sufferers are battling the NHS's "rationing" body, the National Institute for Health and Clinical Excellence (NICE), in an unprecedented High Court challenge made possible by donations from Daily Mail readers.

The court heard that the Alzheimer's Society supplied 4,000 examples to NICE detailing the benefits of the treatment to both sufferers and carers. In addition, NICE carried out its own consultation and received 7,000 responses.

Scroll down for more ...

Michael Fordham QC, for the Alzheimer's Society, told the court: "The responses set out quite clearly and in emphatic terms what this truly meant for the thousands of real people who are affected.

"If you, as carer, get your life back, and the victim is your husband or wife, you both benefit. Why are you asking for a public response if you are not going to take account of their answers when you quantify benefits?

"Why don't you rely on this material when your own guide, to your own processes, emphasises

just how valuable this evidence is? There was no document to show that it relied on any of this evidence."

He said the approach of NICE "simply defies human experience" and had "wiped out the clinical effect of a whole group of thousands of people who were relying on it".

More....

* Doctors vote to give women quicker access to abortions in early pregnancy

There is no cure for Alzheimer's but there are three drugs on the market - Aricept, Exelon and Reminyl - to treat the mild and moderate stages of the disease, and up to half those who try them see an improvement in their condition.

NICE, which is tasked with deciding on which treatments the NHS should concentrate its limited resources, decided the benefit of these drugs did not justify their cost.

As a result of its decision last year, the only patients to receive funding for the drugs are those who were diagnosed before the decision, and those considered "moderate" sufferers of the disease.

Though not available on the NHS, the drugs can be bought over the counter at high street pharmacies, with a prescription from a GP or consultant.

In its defence in court, NICE said the drugs, known as inhibitors, were a "long, long way off" being cost-effective for those with mild forms of the disease.

Nigel Giffin QC said: "There is no doubt the inhibitors were clinically effective, otherwise they would not have been licensed for use. But clinically the effect was a limited one."

When the drugs were first licensed, in 2001, they had been subjected to only 13 randomised clinical trials, but this later rose to 26 and meant a good deal more was known about them.

The hearing is expected to last four days with judgment being delivered in a few weeks.

A NICE spokesman said: "The independent Appraisal Committee and Appeal Panel considered all of the comments they received, but NICE has to act on the evidence. These drugs are simply not effective for all patients, and our job is to ensure NHS resources are well spent.

"If we spend NHS funds on drugs which are not effective, we take money away from other parts of the NHS. This would be likely to cause real injustice to people suffering from other serious conditions."

By jeanette

Re: At Last N.I.C.E is brought to court
Thu 28 Jun 2007 09:10

"If we spend NHS funds on drugs which are not effective, we take money away from other parts of the NHS. This would be likely to cause real injustice to people suffering from other serious conditions."

I look on this statement as a form of blackmail of the general public who have little or no insight to the drugs or Dementia!
The only people who should be listened to are those who have experienced the BENEFIT of these drugs!!
While on the subject ,let me also point out ,with these drugs and SUPPORT/ ASISTANCE/ HELP,lots of the sufferers can be kept in their own homes cared for by their families.Without those things supplied ,how much more will it cost to care for them in CARE? Lots more than a measly £2.50 max a day for a drug which improves everyones quality of life for a while!!

By SocialHeretic

Re: At Last N.I.C.E is brought to court
Thu 28 Jun 2007 09:30

The writing is on the wall.

Drugs are manufactured for profit ..... if there was no profit element , would drugs be manufactured using taxpayers' monies ?

As more and more new drugs coming onto the market now replace existing ones , and the price of the new ones are higher , will a form of rationing be introduced on the pretext of " Staying within budget " ?

If so , this will lead to a classic reality of " Under the NHS , everyone is equal ... but some are more equal than others " ..... those with the means to afford what's not available on the NHS.

Exactly the same has happened with support services .... it doesn't matter if it's a state department \ charity \ private enterprise providing a support service ..... if the cost is the same , and bears no relation to a carer's ability to pay.

We already have a two tiered system for the health \ support services , and that gap will become a chasm.