Multiple Sclerosis Trust

The MS Trust's mission is to make a real difference for people with MS through the provision of information and professional education, by funding practical research and by campaigning for the improvement of MS services. We work to the highest possible standards and actively seek opportunities to work with other organisations to provide real benefit for people with MS.
Nov 6, 2012

Research shows value of personalised information

Our latest research project looked at the information needs of those who are newly diagnosed with MS and those who support them. Appropriate information around the time of diagnosis is important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone's experience is the same.

This research provides information about what is most important to people around the time of diagnosis and will allow us to develop better resources for people newly diagnosed with MS in the future. It also highlights to health professionals the information preferences and needs of people with MS and should allow them to work more effectively.

Key findings were:

  • Neurologists and MS specialist nurses were the key providers of information around the time of diagnosis
  • The need for information changes over time, not always in a predictable way
  • Information should be offered in stages or layers, so that a person can choose how much information they receive on a particular topic at any particular time
  • Positive, practical, up to date information is important
  • Information tailored to the needs of an individual is useful
  • Information should be delivered in a variety of formats
  • The evidence base, or lack of evidence, should be made clear
  • Information can be empowering but too much information, or information at the wrong time, can be detrimental
  • Some people need support to use certain information, for example, when choosing a disease modifying treatment
  • Charities play an important role, including signposting to other organisations
  • Information was lacking in some areas especially on benefits and local services

We are only able to continue providing information to people with MS thanks to the support of generous donors like you. Thank you for helping to fund our free helpline and we look forward to updating you again soon.

Links:

Sep 25, 2012

An ever changing world in MS care

MS is a complex diagnosis with an often fluctuating, variable and unpredictable pathway. This presents unique challenges to the health and social care professionals who work with people living MS. The impact of this complexity and uncertainty cannot be overstated.

MS specialist staff must keep up-to-date with the changing evidence-base, best practice, statutory guidance and therapies available to people living with MS. At present we are able to provide a limited number of study days and if more money were available, we would be in a stronger position to respond to new research findings. For example, research this year has shown that anxiety and depression are highly prevalent in people with MS, indicating that their mental health needs could be better addressed. The MS Trust would like to be able to develop an evidence-based master class in order to ensure that staff are better placed to address the mental health needs of people living with MS.

A relatively new factor that further complicates the support offered to people with MS is the creation of ‘neurological specialist’ services and posts. Where previously an MS specialist was available to people living with MS, they have in some instances been replaced with a ‘neurological specialist’ whose caseload is much wider than MS and incorporates other neurological conditions (Brain Injury, Parkinson’s Disease, Alzheimer’s, Epilepsy, Huntington’s Disease, MND, Spina Bifida, etc). The MS Trust already receives requests from some of these neurological specialists to attend some of the MS specialist master classes and study days but at present we are unable to meet this need.

Increased funding would allow us to develop and deliver a 3 day development module to ensure that neuro-specialist staff have the skills and knowledge required to support people living with MS and recognise their unique requirements amongst a wide and varied caseload.

We are grateful for your continued interest in our work to support MS specialist nurses and we look forward to updating you again soon.

Links:

Aug 3, 2012

Information needs at diagnosis - research complete

Our project on the information needs of people newly diagnosed with multiple sclerosis (MS) has reached the end of the research stage. 34 phone interviews, five face to face interviews and four focus groups took place. In addition, 26 people not selected for interview also submitted information. The majority (84%) were people with MS but family members also contributed.

Analysis of the responses is still underway. So far our research has highlighted factors that influence how people seek and use information after diagnosis including:

  • How they seek information in general (not just about MS)
  • Whether diagnosis was a drawn out process and largely expected, or whether it was quick and unexpected
  • What symptoms they are experiencing
  • The time needed to adjust to the idea of having MS
  • Support from friends, family or health professionals in using information, especially when deciding about treatments
  • MS nurses played a key role in providing information and supporting people to use it.

The MS Trust commissioned this research to help us develop better resources for people newly diagnosed with MS in the future. We will update you further on this project once the responses have been analyzed. Thank you for supporting us to provide the best possible information for people with MS through our helpline, website and free publications.

Links:

donate now:

An anonymous donor will match all new monthly recurring donations, but only if 75% of donors upgrade to a recurring donation today.
Terms and conditions apply.
Make a monthly recurring donation on your credit card. You can cancel at any time.
Make a donation in honor or memory of:
What kind of card would you like to send?
How much would you like to donate?
  • $10
    give
  • $23
    give
  • $57
    give
  • $275
    give
  • $10
    each month
    give
  • $23
    each month
    give
  • $57
    each month
    give
  • $275
    each month
    give
  • $
    give
gift Make this donation a gift, in honor of, or in memory of someone?