Personal perspectives from Chris Jones, retired Chief Executive, and Jill Holt on setting up the MS Trust in 1993 (A longer version of this appeared in Open Door May 2008)
Most charities are born out of the conviction of individuals and a frustration at a particular need not being met. The MS Trust is no exception.
The two individuals concerned were Jill Holt and me. We had been involved in the MS world for some years through another charity, raising funds for MS research through selling Christmas cards.
Back in 1993, our shared convictions were that
- applied research was under-funded
- information, especially for the newly diagnosed, was woefully inadequate
- the image of MS was unduly negative
- NHS services left a lot to be desired.
Personal experience shaped those convictions. Both Jill's mother and her mother's sister had MS. Her aunt became severely and rapidly disabled and later, when Jill's mother was also diagnosed, she chose to cope with her MS privately. She withdrew from many activities, waiting for severe physical disability to overtake her. It never did - but she was emotionally and psychologically disabled from the moment of diagnosis.
When I was diagnosed in 1980, I could get no answers to my many questions. My GP didn't know; my neurologist thought I shouldn't know; the books in the library were out of date; the internet didn't exist. I couldn't access the information I wanted because I wasn't a doctor, but without medical training I couldn't understand it anyway.
When the charity we were working with closed in 1993, there was no funding for its research programme. After much deliberation, Jill and I decided we would try to generate enough money to support the research projects which would otherwise have folded. We therefore set up a small charitable trust to turn the trading profits into research grants.
Jill and I were part of a group of well-informed people with MS who continued to want good information. There was therefore considerable pressure on us to deliver not only research funding but also an information service. As a result, Open Door, our quarterly newsletter, was born.
With help from other trustees, specialist doctors, nurses, therapists, dieticians and people with MS, we put together our first publication - an information pack particularly targeting the newly diagnosed. It was an attempt to offer answers to the questions people had - the answers which were so hard to find. The challenge was to reach newly diagnosed people and so in 1995 we sent the information pack to every neurologist in the UK.
The response was amazing, not only from neurologists saying, "Yes please, send more packs", but also from nurses who were working for the first time with people with MS. The reason was beta interferon, licensed in 1995 and the first treatment to modify the condition rather than treat symptoms. All those people who had been told, "You've got MS; go home and learn to live with it", were asking for appointments with neurologists they hadn't seen for years because they had taken them at their word - gone home and not come back. Sadly, 80% of those people were too late for beta interferon, but they weren't too late to benefit from better symptom management which many had also missed out on. Neurology clinics became very busy places.
Because beta interferon is self-injected, the first pharmaceutical company to receive a license recognised that additional nursing support would be necessary and recruited 30 agency nurses across the UK. With other drugs also awaiting licenses, there would soon be more non-NHS nurses - at a time when there were only three MS specialist nurses working in the NHS in the whole of the UK. The challenge was to unite and bring together all nurses to improve care for everyone with MS, not just those eligible for the new drugs. For this reason, the Royal College of Nursing called a meeting of the company, the Department of Health, MS Society and MS Trust. All recognised the value that MS nurses could bring and their scarcity; all recognised that key to their success was an education programme to increase knowledge in a relatively new (for nurses) disease area. Either the MS Society or the MS Trust had to take on this educational role.
Somewhat reluctantly Jill and I agreed that the MS Trust would do so. Our reluctance stemmed from lack of knowledge and experience of nursing, but we felt that MS specialist nurses really could make a difference. We set to work to develop the expertise in-house to run an accredited education programme, produce a newsletter for health professionals (Way Ahead) and fund research to demonstrate the value of MS specialist nursing.
It was the beginning of a period of major expansion for the MS Trust, not only to develop the education programmes but also to meet the growing demand for information from both people with MS and health professionals.
Since then thousands of nurses and therapists have attended our education programmes, thousands of publications go out each year, and of course there’s the website. We've also become an increasingly loud voice in improving services for people with MS.
It just goes to show that, no matter how small the beginnings, you should never think you can't make a difference!