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lt is a genuine government grant scheme. l had my central heating installed FREE last week. My mum has had hers for a few years. We get so little help with our diseases, it's 'nice' to know that there is some help out there for us for free! l'm 'spreading the word' to everyone. One of my friends with MS has also had free c/h. and another has been given a boiler when her own stopped working.
Karen
A TIP FROM A MEMBER S NEUROLOGIST
To prevent an irritation at the injection site when using Aimspro to start with.
Should there be a droplet adhering� to the tip of the
needle after venting the air from the syringe, tap the
syringe with the fingertip to remove the droplet.
This prevents the serum from contact with the skin and does stop the itchiness etc.
Most should find this very effective.
I don't know how many of you will have read the article in The Times 13 01 07, '
When caring clashes with costs -
There is one section of the interview which I feel has real relevance for Proventus and it discusses the price or cost put on a healthy year of life. '...........the case goes to the heart of the nasty business: how does NICE put a value on human life? The pharmaceutical companies want to discover the secret equation by which NICE decides whether a drug will be cleared for NHS use. It is fiendishly complicated, but bear with us: at its heart is its attempt to put a price on one perfectly healthy year............How much is this worth?
Priceless, many would say, but NICE puts it at £30,000. Very roughly, if the extra cost of a new treatment to give one good year of health is more than that, there have to be exceptional circumstance for NICE to approve it.'
If this is the case, and should Aimspro, after all its trials, prove efficacious, at £19,000 per annum, funding on the NHS shouldn't be a problem: good. But somehow, I'm quite sure that it's not going to be as simple as this, and if there are any members of Proventus who can shed any further light of this issue, I'm sure that it would help our lobbying position greatly.
The Editor, PROVENTUS,
P.O. Box 80,
Ashford,
Kent TN23 9AT.
9 May, 2007
Dear Sir,
Multiple Sclerosis - The Hidden Disease
It would seem that those who are affected by Multiple Sclerosis might as well be invisible when one considers how little is done for them and how little progress has been made over the last twenty to thirty years, to develop viable treatments for this debilitating condition.
My wife was diagnosed as having MS in 1991, however, she did experience symptoms similar to those associated with MS about fourteen years earlier but the specialist at that time came to the conclusion that she did not have MS. No reasons were given, but fortunately she had no further problems until 1991, when she was diagnosed after temporary loss of vision in one eye. Although she is not wheelchair dependent, she has difficulty in getting about and requires help with most things around the house.
From the time she was diagnosed, my wife has only been seen by a neurologist about four or five times. Furthermore, she has not had any treatment from the NHS, apart from two courses of intravenous steroids, of which, only the first was effective. Because MS is an ongoing condition, even physiotherapy is not available, at least in the area we live.
My wife and I are fortunate that we can, in the short term, self fund Aimspro, which is making a noticeable difference in my wife’s case, but why should we be forced to self fund? Like most people, I have paid taxes and National Insurance.
Unlike Cancer Research, how often do we hear appeals to raise funds specifically for research into understanding and finding viable treatments for Multiple Sclerosis? NEVER! Multiple Sclerosis is clearly seen as a low priority condition but somehow this has to change.
Although there seems, at this moment in time, to be a number of potential treatments at various stages of research, I believe until a much greater effort is made in understanding the condition, it could be a long time before treatments are widely available to all in need. Therefore, I feel it is important to somehow stimulate interest in Multiple Sclerosis and raise the necessary funding to finance meaningful research.
The point of this letter is -
Yours faithfully
Gordon Ellis
Multiple Sclerosis-Throwing Stones
A man was driving his brand new sports car along the streets of the city and although he was very proud he was driving carefully just in case a child or dog should run out from between the parked cars.
Suddenly BANG – a brick had been thrown at his car and had squarely hit the side door. He stopped quickly, jumped out and ran to see the damage. There was a huge dent and a nasty scratch on the new paintwork.
Standing watching was the young man who had obviously thrown the missile that had done the damage – he grabbed the kid by the collar and was about to box him around the ears when he observed that the lad was in a very distressed state.
“What the devil do you think you are playing at?” the man yelled.
“Please,” sobbed the boy, “Please help me – I had to throw the brick to get your attention!”
The man enquired, “What are you talking about?”
“My older brother has fallen out of his wheelchair and I can’t pick him up on my own. Everyone is walking past not wanting to know my problem. Throwing the stone was my only way of getting someone’s attention.”
The man was amazed and quickly went to where the upset wheelchair and the boy’s brother lay on the pavement. Gently but strongly he helped to restore the boy’s brother and his wheelchair to the upright position. He checked that everything was OK and was overwhelmed by the gratitude he was shown. He got back into his car and drove off feeling fortunate rather than proud in his new car. It was a long time before he had the mark repaired as the memory of how it came about burned in his mind. He shared the experience with many friends and colleagues in the hope that they too had become alerted to the plight of others through his experience.
This is actually a true story and it happened in Paris.
Multiple Sclerosis-The Hidden Disease
None the less it gives a response to the question asked by Gordon Ellis “The Invisible People” – “Why are so many disabled people not seen, not heard and not spoken about?” SW
“We must become the change we want to see in the world”
Mahatma Gandhi 1869-
