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MS Trust: past and future!

Chris Jones, Chief Executive
MS Trust

Way Ahead 2008;12(3):1
Chris Jones Chris Jones

After 15 years, Chris Jones is stepping aside as Chief Executive of the MS Trust; from August 2008 Pam Macfarlane will take over. Pam and Chris have worked together for the past four years, sharing a commitment to improving services for people affected by MS. Chris will continue to be involved with the Trust as a trustee and writes below about the background to the MS Trust.

"Back in 1993, the reasons for setting up the Trust were that:

  • applied research was under-funded
  • information, especially for the newly diagnosed, was woefully inadequate
  • NHS services left a lot to be desired.

The MS Trust was set up when ARMS (Action and Research into MS) ceased to operate. ARMS had funded MS research, at a time when no other organisations were making research a priority, and the primary reason for setting up the MS Trust was to support the research which ARMS' failure put at risk.

It also left an information gap which the Trust worked hard to fill. Our newsletter 'Open Door' was introduced and, with the help of specialist health professionals, we put together an information pack for the newly diagnosed. In order to reach them, in 1995 we sent the pack to every neurologist in the UK.

The response surprised us; it came not only from neurologists, but also from nurses working for the first time with people with MS. The reason was beta interferon. All those people who had been "diagnosed and adiosed" were asking for appointments; neurology clinics became very busy places.

In 1995 there were only 3 NHS MS specialist nurses in the UK. The first company to receive a drug license recognised that additional support would be necessary and recruited 30 nurses across the UK. With other companies likely to follow suit, it was important to bring together all nurses to improve care for everyone with MS, not just those eligible for the drugs. Everyone recognised the potential value of MS nurses as well as the need to develop an education programme to increase knowledge in a relatively new (for treatment!) disease area. With the encouragement of the RCN, the Department of Health and the MS Society, the MS Trust agreed to take on this educational and networking role.

So much for history; the MS Trust has grown and developed considerably since those early days. The growth in MS nursing has been phenomenal and, more recently, developments in the work of Therapists in MS has been equally gratifying. Nothing illustrates this more than our annual multidisciplinary conference now in its 12th year and going from strength to strength in quality of delegates, presentations and influence.

Change of leadership always gives an opportunity for stocktaking - a time to look back as well as forward. In re-examining our history over the past few months, we are in no doubt that our early strap line 'information, research and education' still holds true. Equally, we remain firm in the belief that the best possible outcomes for people with MS arise from well informed patients working with health professionals knowledgeable about MS. For this reason our new leadership team remains as committed as ever to supporting health professionals who work in the field of MS."

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