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Discussion in 'ARCHIVE FORUM: Support discussions' started by noelphobic, Jan 23, 2007.
Thanks for that link , GOOD !! just what I needed to read
NICE think they can play god with medication for people with dementia / AZ,
Lets all mediate on the thought that the judge who see the case has a love one with Dementia AZ
Its good to see this happening at long last.
But what we need is a sympathetic Judge who really wants to listen to the true reasons behind this desicion, and not to someone who was given a job by a government to cut costs at any expence.
If NICE get away with this, other treatments will get the chop, which is a great shame because most of us have spent all our working lives paying taxes, and now I feel that because we can not do so any longer our medication is being withdrawn.
I have written to many MPs over the last few months and have only found one so far who was sympathic. But the general answer seems to be that NICE was set up by the government to do a job, and they are suceeding. The sad thing is that this is being condoned by all three parties, so we don't stand much chance.
I have already written to my own drug company with an offer to help if needed.
We will just have to hope that we can win.
NICE aren't just involved with medication for people with dementia. They make decisions on treatments for a lot of other conditions including cancer and diabetes.
Someone tell me I'm wrong ... but NICE are a bunch of theorists, clever as they are ...... non? I think I'm with Margarita here ... if NICE was made up of a forum of sufferers and carers (from whatever disease), not statisticians, would their decisions be different......???
Hi Tender Face,
I am sure many of us are thinking along the same lines as yourself and Margarita and find it very hard to work out what these people in NICE are doing.
I know its not just us that is getting the problem, but we seem to be getting the worst of it.
I like many other would like to know what qualifications some of these people have, both medical and educationaly, because there dosn't seem to be much between them. When the same medication is available overseas and in Scotland but not here, one has to ask why and it can only be to do with money sadly.
Still hopfully one day we will get there without them.
All the Best
Yes indeed. It is all down to what they call "cost benefit".
In the case of people with dementia, the equation is "Do people in the early stages cost the NHS more than it would cost to give them the drugs? and the answer is probably no. Only in the later stages, when more intervention is required, do the "benefits" outweigh the "costs".
The benefits to the people with the disease and their loved ones/carers is usually ignored. Indeed, if you look at the NICE website, you will find that every single instance of the evidence provided by carers etc that quality of life could be improved is met by the blanket term "not cost effective".
Interesting to see that the NICE ruling about drugs for people with bowel cancer has just been upheld.
For myself, I think that everyone on that NICE committee should be made to live with and care for someone in the early stages for a week or so, rather than viewing their nice tidy statistical tables.
There are reports in the press that four million people Britons are prescribed statins, at a cost of £1 billion. They now say statins are ineffective for women and for men over 69, and may in fact be harmful.
Where is NICE on this issue, and when they are withdrawn can Alzheimer's sufferers have the money?
Problem is that Mental Health is the "Cinderella" of the NHS.
If there are going to be cuts and cost-savings, this is where they will be.
Much of this is because of the stigma that mental illness of all types carries, plus a general ignorance that mental illness isn't as "real" as other illnesses.
I also tend to think that - again the main cause is ignorance - most people don't know how devastating dementia can be to the patient/their carers and also most people don't think they will get it at all, or only when they are very old.
Heart disease is something "tangible" and "real" that people can more easily relate to.
For myself I think that New Labour should ditch it's wretched ID card scheme and give the billions to the NHS instead.
Tell my Dad who is denied drugs through cost and probably a care place when the time comes "never mind you have your ID card to prove you are elligible for services".
It makes me so angry!!!
Slightly off-track but in a similar vein. I was talking to a doctor last week who had worked in a hospital that employed specialist care assistants, mainly to work with dementia patients when they were admitted or had to have tests, she was saying how short sighted the powers that be are as over the year the amount of medication required whilst hospitalised, the time spent persuading patients into MRI scanners etc was lessened and the time required in hospital was less but they turned round and said the specialist care assts were costing too much and withdrew funding, they could not see that over a longer period of time the money saved and time saved would be much more than the funding required for the assts....... sometimes I despair, it all sounds so familiar to NICE
Everything is to do with funding when you fall ill. This affects the Social Services as well and all care.
Thanks to the way that Government funding works, no-one considers long term cost savings that can be brought about by extra expenditure in the short term. More, the long-term benefits may well help more people - but they don't help this year's targets.
It's all about this year's budget.
And so it goes on...........the health authority I work for have brought in a bunch of accountants to 'cost cut' jobs, ooops sorry - 'defer jobs' (new NHS speak for redundancy!). So any time soon you could find yourself talking to some far flung call centre about your appointment etc., you know how it goes when you are trying to sort out your bank account, well you aint seen nothing yet. And your case files going the same route for typing up of reports etc., Be afraid, be very afraid
Cate, that sounds horrendous. I hate call centres. NHS24 is bad enough, but I really do not want to discuss my diverticulitis with someone in India whose English is dubious.
Oh for the good old days, when the lovely, cuddly family doctor would call round and give you some magic pills from his black bag!
Hi Cate, I got the message early on that costs were important, and that once one's over 65' services either stopped or were curtailed. When my wife was dix with Alz she was seen by a Psychologist monthly. At her last appointment, Sept of '99 I was advised he was being transfered to Birmingham and future appointments would be taken up by one of two other men. In mid Oct of that year I tried to make an appointment and was told: "We will not be seeing your wife anymore." When I asked why; "She's over 65 and we do not see patients after that." She was 65 on the 7th Oct '99!
However things appear to be looking up. We had a visit out of the blue from an OT, we saw one of them around three and a half years ago. This young American girl was giving me tips on how to give Jean physio. It was very nice of her to leave me a four page instruction on Passive Range Of Motion Exercises. It's a fun read:
Stop ROM exercises if person feels pain. Ask the person right away if he feels any pain.
Use good posture while doing ROM exercises. Standing or sitting as straight as possable will help breathing. Keep your stomach muscels tight and pull your hips into a straight line under your shoulders.
I'm laughing out loud reading this. If Jean was, or becomes capable of performing these exercises it'll not be long before I'll be having her with me on my morning runs!
This has got to be off an American internet site, as the full site details are given at the end. Shame they wasted time and fuel when they could have phoned the website details to me. I'll give it my best shot, never say never, and my motto with Alzheimer's is: Always expect the unexpected. Keep wining you all. Padraig.
Well I havent laughed so loud in a long time.............crazy isn't it........you must let us know how its going........especially if Jean gets her trainers on and goes with you for that morning run
Personally I could shoot the b....y lot of them, but thats just my opinion.........Oh for the NHS I started working for nearly 35 years ago (ooops giving away my age a tat here )
Your totally right Skye, those were the days when your GP knew you personally, the receptionist wasn't the devil incarnate..........and Sister ran the Ward with an iron fist...........yes they were hard task masters, but you saw more nurses than b....y 'suits' in the corridors, and the 'super bugs' wouldn't dare appear in 'Matron's' hospital........and yes I appreciate that medicine has come a long way.............but dear God at what cost.
Keep up the fight Padraig............dont let the buggers win.
Love to all
Hi Cate, There's a lot of talk now about being British and Britishness. As an outside observer I consider to be British is to be a member of the Monty Python club. Since my wife got Alzheimer's I have, and am experiencing situation comedy, and seeing it so helps me no end. When I took my wife for her EEG I had to outline her condition; stiff, can't move nor speak. The Expert asks me "Can she feed herself?" Felt like saying:"Ask her"
I have had two letters from the local hospital, one yesterday Sat. One to change my wife's appointment to the 1st Feb 10.15 at the Stroke Clinic. The Other for me to attend the X-ray dep ref gall stones, on 1st Feb 14.00hrs. One is signed by an Appointments Clerk, the other by an Appointments Officer! I wonder if they all work at that Booking Center, I couldn't get through to?
People think the Passport and Immigration Office is a comedy of errors. Well I always knew that. I recent years our daughter was refused a British Passport, because she was born in a Military Hospital in Germany, of an English mother and serving Irish father. She was refused a British birth certificate, while the Irish questioned why I was serving in the British forces. Result, German birth certificate!
Years later when she applied for a passport she was rejected, in spite of providing the office with my British Passport and letter granting me British Citizenship ( they needed to post me to Bahrain) She was married to a senior serving REGIMENT man and her eldest son has since completed two tours in Iraq and is shortly off to Afghanistan. She now has an Irish Passport, but could get a German one! You just gotta laigh. Padraig