News - August 2012
Open Door - August 2012 page 3
Information needs research
Our project on the information needs of people newly diagnosed with MS, mentioned in previous issues of Open Door, has reached the end of the research stage. Thank you very much to everyone who volunteered to take part.
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.
A full article will appear in the next issue of Open Door and the report will be available on the MS Trust website. The MS Trust commissioned this research to help us develop better resources for people newly diagnosed with MS in the future.
Radio 4 appeal
Chris Jones, co-founder of the MS Trust, presented the BBC Radio 4 Appeal on 20 May. She talked about her own diagnosis over 30 years ago and about wanting better support and information for people with MS.
DH information strategy
The Department of Health (DH) has published a ten year framework for improving access to information in the NHS and social care, including access to GP records online by 2015, test results available electronically and booking or re-arranging medical appointments online.
The strategy highlights good, accurate information as vital to making choices about health care. The MS Trust holds the Information Standard, the DH quality mark that enables people to quickly identify reliable sources of high quality, evidence-based information.
Balance and mobility trial
The University of Plymouth is running a multi-centre clinical trial investigating different types of physiotherapy exercise for people with MS with mild to moderate difficulties with balance and mobility.
To be eligible, participants need to live within 20 miles of one of the following centres:
- Cumbernauld in North Lanarkshire
- Plymouth, Tavistock and Newton Abbot in Devon
- Hewas Water in Cornwall
If you are aged over 18 years, are able to walk independently with or without a walking aid, have not had a relapse within the past three months and are not currently participating in another clinical trial, you may be eligible to take part in this study. Participants will undertake one to one exercise sessions with a physiotherapist over a 12 week period together with a home exercise programme. There will also be three assessment sessions. Travel expenses will be reimbursed.
For further information contact Esther Fox (trial co-ordinator) on firstname.lastname@example.org or 01752 587599. This project is funded by the MS Trust and builds on a pilot project that we also supported.
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