How we made a difference for people living with MS in 2011
Open Door - May 2012 pages 14-15
At the beginning of each year we take time to reflect on what we have done in the previous twelve months and ask ourselves, "Has it made a difference to people living with MS?"
Supporting people with MS
Living with MS can be a lonely business. The support and quality information that the MS Trust
provides - every day of the year - is invaluable. Thank you MS Trust!
Alan Beevers, diagnosed with MS in 2003
Since the MS Trust was established in 1993 we have learnt many things. We started out by producing an information pack for people diagnosed with MS and a regular newsletter. People responded to us with questions and it is this ongoing conversation that has helped us identify the areas of real concern for people affected by MS. People tell us that the information we offer is vital, but they also tell us that what the MS Trust really gives people living with MS is someone to talk to, reassurance and hope for the future. Whether someone is simply requesting a copy of a book or calling with a complex question about their MS, people can be assured that there is someone at the end of the phone at the MS Trust who wants to help. We have learnt that, aside from the symptoms, the hardest things to deal with when you have MS are the unknowns. We can't take away the uncertainty, but we can provide the facts and help people better understand their MS.
A vital element of our information service is that it based on evidence and can be trusted - particularly important with the breadth of information now available via the internet. In 2011 the MS Trust was awarded the Information Standard by the Department of Health meaning that our information has been certified as trustworthy health information. Another crucial factor in our information service is that it is accessible to all and provided free of charge. We answer enquiries via our freephone number, by email and letter and through social networking sites. Our books and factsheets are distributed by MS nurses and local support groups as well as direct from our office and are downloadable from our website.
This brings us to one of the biggest challenges we faced in 2011. Like many charities, the MS Trust has seen a drop in its income in the last few years and it has become significantly more difficult to raise the funds to pay for our work.
The MS Trust needs to raise almost £600,000 each year to fund its information service and demand is increasing all the time. Attracting financial support for our work is often difficult; we receive no government funding for this service. It is difficult for those not affected by MS to understand the impact of the condition and how important reliable information is. We want to ensure that our information and support remains freely available to all, but we need your help to do it.
Supporting MS services
I have been a specialist nurse in MS since 1997 and throughout that time have been supported by the MS
Trust. The MS Trust is always at the forefront of any campaign or strategy to improve MS care. Even more
importantly they provide a quality service to those with MS.
Nicki Ward-Abel, MS specialist nurse
The MS Trust is committed to supporting and developing MS specialist services in the UK because we believe that this will result in the best care for people living with MS and we know how much people value the health professionals who support them.
We work hard to produce evidence to identify what is required and demonstrate the value of specialist services. Once services are in place, we provide specialist education and continuing professional development for health and social care professionals to ensure high quality services are maintained. Whilst many people assume that this will be provided by the NHS, unfortunately it is not, which is why the MS Trust's education programme is a vital factor in building MS specialist services in the UK.
In 2011 we funded research to help us define the value of MS specialist nurses and to help us map where services do and do not exist. Through our MS Nurse Support Programme, we provided one to one mentoring and advocacy to specialists facing reviews of their services and a range of tools to help them audit their own services and to demonstrate their own value.
2011 also saw us complete our third audit of MS services in partnership with the Royal College of Physicians. We found there has been no major improvement in many aspects of service provision for people with MS since 2006 and that one third of NHS trusts have no plans to improve neurological services in the next year. The MS Trust is determined to improve services for people with MS by continuing to monitor progress in the NHS and provide evidence to show where services are lacking.
Making a difference together
We would like to take this opportunity to say thank you to everyone who has supported us in the past year and enabled us to provide vital support to people affected by MS and the MS specialists who work with them.
Every year demand grows for our services and our team of 29 people continues to meet those demands. In 2012 the MS Trust needs to raise £1.5 million to fund its services.
2011 in numbers
requests for support from the Information Team
publications sent out
copies Primary Progressive MS Exposed sent out
views of the A to Z of MS pages on our website
health and social care professionals attended our educational events
readers of Way Ahead, our newsletter for health professionals
local resources listed on our map of services - www.mstrust.org.uk/map
miles run by the 454 runners who raised £248,827