MS Trust comes of age!
Pam Macfarlane, Chief Executive, MS Trust
Open Door - August 2011 pages 12-13
The MS Trust is about to celebrate its 18th birthday - one of those milestones where it's good to take a look back and also to think about the future.
Many charities are the result of personal experiences. The MS Trust was started in 1993 by Jill Holt and Chris Jones. Jill had seen both her mother and aunt struggle with MS, whilst Chris, then a mother to two young children, had been diagnosed with MS in her 30s. Both had become increasingly frustrated that the needs of people with MS were not being met:
- Information, especially for the newly diagnosed, was woefully inadequate
- Applied research was under funded
- NHS services were poor
- The image of MS was unduly negative
It is their shared commitment to address these issues that has shaped the work of the MS Trust throughout the last 18 years.
Information
The Information Service has been at the heart of what we do since we began. Since 1997, Open Door has been central to this, bringing together the latest news and research along with views from the experts - people who live and work with MS.
The feedback and questions received by the Information Service have helped us identify the areas of real concern for people with MS. By working closely with health professionals, people with MS and their families, we have been able to develop a range of trusted, accessible and attractive books and factsheets that provide the information that people need.
Life has changed significantly in the last 18 years. We are now in the age of the instant response. There is certainly not a lack of information about MS today - a single search on the web will bring up millions of results and social networks allow for instant sharing of personal experiences. It is often difficult to separate the facts from the fiction and the challenge is filtering all this information into something meaningful. Today, our Information Service is more important than ever; here to help by distilling the hope from the hype and researching the answers to your questions about MS.
Research
The MS Trust has always believed in funding practical research to help people living with MS now. We were unique in this belief in 1993.
Projects we have supported over the years have demonstrated the value of physiotherapy, of exercise, of keeping people in work and of devices such as FES, which helps with walking. We continue to fund good quality, practical studies which are often pilot studies for larger trials. We also recognised that in order to get more specialised MS services, we would need to prove the worth of specific roles and so we commissioned research to prove the value of specialist nurses.
As a result of our funding of initial projects such as these, we have been able to influence the way everyone looks at the treatment and the services offered to people with MS.
Improved services
MS nurses at an MS Trust education course
Improving NHS services for people with MS is a huge challenge. Our three audits with the Royal College of Physicians have demonstrated considerable shortcomings in MS services. The MS Trust has used this evidence to influence on a number of fronts. We know many people still do not have access to specialist nurses or physiotherapy services, but we believe we have made some progress.
A core belief of the MS Trust is that the best results happen when the clinical expertise of health professionals is combined with the personal expertise of people living with MS on a daily basis. It is our job to help make that partnership work by providing all the information and support we can to both parties.
Our work with MS nurses began in the mid 1990s. At the time there were just three MS nurses but it was obvious that they could greatly improve care for everyone with MS. At a joint meeting of the Royal College of Nursing, Department of Health, MS Society and MS Trust, it was agreed that the MS Trust was best placed to develop a network for MS nurses across the UK. This led to an accredited education programme to increase their knowledge so that they could really make a difference for all people with MS.
Today this programme enables all new MS nurses and therapists to learn in detail about the diagnosis and assessment of MS, management of symptoms the input of other specialities and therapists. The course includes a session with a person with MS talking about their day to day life. Feedback often highlights this session as the one that really brings home the reality of MS to the group.
Our education programme also includes a specialist nurse meeting, an annual conference attended by over 350 MS health professionals, and study days throughout the UK. Our MS nurse support programme provides resources, education opportunities, and mentoring for MS nurses, particularly those whose posts are under threat. The work we have done to support MS nurses has led us to specialist training for therapists and we now support a Therapists in MS network across the UK. These education programmes are supplemented by Way Ahead, a quarterly journal for health and social care professionals working with people with MS.
Your support
Fundraiser Doris Ireland with members of the MS Trust team
For its size - currently 28 staff, many part time - the MS Trust has achieved a lot over the last 18 years, but our achievements wouldn't happen without your support and input to our work.
- You call our Information Service and challenge them with questions and tell us where there are gaps in information. And your fundraising and donations enable us to provide all our information free to those who need it.
- You've supported our campaigning to get more nurses, our help for people in posts under threat and our education programme which adds to their understanding of the challenges of living with MS.
- You have helped us change the attitude of others to life with a long-term condition - it's not about what you can't do, it's all about what you CAN do.
The future
In the last 18 years we've just scratched the surface.
- Of the UK population, 16% has a neurological condition, yet the NHS spends just 3% of its budget on neurology and MS gets just a tiny proportion of that.
- We need to understand what the changes to the NHS will mean for people with MS. We need to protect the role of MS nurses and ensure they continue to get the support and education they need. And we need more of them.
- We need to increase the investment in practical research - so that we can prove to the people who control the NHS budget the benefits of practical help for people with MS now.
- We need to continue campaigning for better MS services, access to new drugs and treatments and joined up health and social care services.
- Information presents many challenges. We all like our information presented in different ways. We want the MS Trust information available to the widest possible audience so we need to look at all of those ways. Print, website, phone, Facebook, Twitter, YouTube, email - we will be there.
Some of you will have been on the whole 18 year journey with us, some of you have joined us along the way. Our thanks to all of you who have - and continue to - inform, inspire and support our work.
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Disclaimer
Open Door articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.