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Have you ever been to H.A.D ?
Report by Sue Filby

Hertfordshire Action on Disability Centre HAD, is based in Welwyn Garden City. Until last year I knew about the centre but had never actually visited. Then in September I heard that they were having an Open Day at the Centre so I decided to go along and see for myself.

Since my relapse last April I was trying to come to terms with the difficulties I was having in everyday activities such as bathing. My biggest problem was that I was no longer independent, as I was unable to drive having lost the feeling in my feet. I had become reliant upon my husband and my father to take me to all the places that I used to go to without any thought; the supermarket, doctors, dentist, library and Branch meetings. Peter and I discussed getting hand controls for the car but as our car was due to be changed in December I was reluctant to do anything until we had the new one. Then came the thought, how do I cope with hand controls after all these years using my feet?

At the Open Day I was surprised at the number of companies displaying all the different aids for the disabled. Some of the things I saw, especially for bathing, I didn’t know existed. There was a unit on display that combined the toilet with a shower and dryer so you did not have the problem of toweling yourself dry.

Moving between the different marquees I came upon Matt Miller sitting in the Centre’s dual controlled car. I explained my problem and my worries about changing to hand controls. ’No problem’ says Matt. He then went on to explain what I had to do in getting permission from the DVLC and that he was employed full time at the Centre to give driving lessons, not just to those learning to drive but for people who wanted to learn how to use hand controls. My saviour! Matt advised that the average time to get used to the controls was six hours, so I started my lessons in November to give me enough time to become proficient before I took delivery of the car.

The day of my first lesson arrived and I was a little apprehensive but Matt put me completely at ease and the time just flew past. At the start of my lesson Matt asked if I wanted him to pick up my bad points as we went along. As I had been driving for 30 years I thought I had probably picked up one or two! It was just like being 17 again, but I must say Matt did it in a very gentle way, and since I have been back driving on my own I have found I have changed some of my ways in driving. After my second lesson, I had managed so well, we
decided I probably did not need the six hours and I had my last lesson two days before I got the new car.
So, my experience of changing to hand controls was, as Matt said ‘No problem!’

The Centre has a number of aids on display, there are different types of bath lifts and seating, different shower layouts and toilet aids. There are numerous wheelchairs, scooters, electric armchairs and walking aids. There are also the more everyday items available such as kitchen equipment, cutlery, cushions and what I call knick-knacks. The cost of the equipment seems to be at a much lower price than that in other disability stores or catalogues. I have found the staff are very helpful. Recently I was refused a stair lift by Social Services, when I made enquires at the Centre they gave me the name of two companies and advice to the type of lift suitable for me. There is also a notice board at the Centre advertising second-hand items for sale, at some very reasonable prices.

The Centre offers many more services other than those I have talked about here, but this has just been my experience of the Centre.

If you would like further details of the services on offer you can telephone 01707 324581 or look on their website at www.hertsaction.dial.pipex.com

MS Nurse—update
Report by Pamela Little

The meeting of the MS Self-Referral Committee, held at the end of January, discussed the proposed bid for an MS Nurse at the Lister Hospital.

This bid has been put forward by the Hertfordshire MS Therapy Centre who have been offered funding by the Sylvia Adams Trust. The MS Society would match this funding, thus providing in total 50% of the cost of the nurse between the two MS charities. The Primary Care Trust, as it will be in April, would need to provide the other 50% of the funding and give an ongoing commitment to meet the cost of the nurse in three years’ time when the MS Society’s MS Nurse Fund scheme comes to an end.

At the time of going to press the PCG/T is still considering the scheme and ways of funding the nurse. Current health policy is more in favour of a multi-disciplinary team approach which means we could not have a nurse dedicated just to MS patients. This means that a bid for a nurse through the MS Society’s scheme is out of the question. It also means that the PCG/Ts will lose out on £60,000 funding over the next three years. The PCG/Ts loss is our loss as we will not get the MS Nurse we so desperately need.

Negotiations continue and further meetings to discuss the project are planned for March, so although it is hard to remain optimistic, we shall continue to fight for our nurse.

(not so ) N.I.C.E. News

There was further news during December with regard to the NICE deliberations over Beta Inteferons and Glatiramer Acetate.

On December 22^nd 2000, NICE issued a press release stating their latest findings. A full copy of the Press Release can be obtained from Hazel or can be viewed at the MS Society Website at www.mssociety.org.uk.

Current state of play

NICE is commissioning new work to assess the cost-effectiveness of the drugs. It expects to complete this work by July. NICE’s normal consultation process will then take place, which means that a final decision is unlikely before the autumn. This move follows the MS Society’s successful appeal against NICE’s original negative decision.

What the MS Society thinks about this situation

The delay is unacceptable to people affected by MS. NICE will have taken two years to take a decision on proven, licensed, drugs which are already widely used in other developed countries. Meanwhile, certain people with MS will pass the point at which the drugs can be of use to them. The cost of the drugs is a known factor. What NICE doesn’t seem capable of doing is making a sensible assessment of the benefits of the drugs to individuals, and also of the offsetting savings which may result if people need less support from health and social services and from the social security system. NICE should not use this issue as a training exercise while it sorts out what procedures to follow. The Society will be calling on health ministers – Alan Milburn for England and Jane Hutt for Wales – to intervene to protect the interests of people with MS. The Society is also keeping the option of legal action under review. The Society is co-operating with other interested parties such the MS Research Trust and the Association of British Neurologists .

What can I do?

Ministers are acutely aware of the high public profile of this issue. This has only been achieved by hundreds of people contacting their elected representatives and local media. You may already have done this. It is worth doing it again – questioning NICE’s competence and saying Alan Milburn and Jane Hutt should intervene. If your Member of Parliament has been supportive, remember to tell them how much you value their support. Don’t forget that you can also contact your MP by phone – just call the House of Commons on 020 7219 3000

Information taken from MSS Website

We are fortunate that in our Health Authority funding has been made available for people with MS whose doctors believe Beta Inteferon is applicable. But for others less fortunate the waiting continues.

Do you have a view on this subject ? Use the link below to send your letters and comments to the Editor and we will publish as many as possible in the next copy of The Main Issue.