News
Open Door - November 2009 page 3
- MS Trust funded research
- Future of care consultation
- Priorities in the management of continence problems
- Assisted suicide guidance published
MS Trust funded research
Several research trials funded by the MS Trust have reported results recently. Publication of a study of vibration therapy and news of a follow on study of work looking at steroid treatment at home are reported in Research News in this issue.
Research by the Royal Hospital for Neuro-disability in London into the experiences of families living with someone with advanced MS was presented as a poster at the recent ECTRIMS conference (more on ECTRIMS). An article based on this research appeared in the May issue of Open Door. The MS Trust is funding the MRI element of the CUPID study looking at cannabis based medicine in progressive MS. In August, the researchers announced that the first participants have completed the three year study period. The trial is expected to complete in 2012.
An MS Trust funded study of fatigue management was published in August. Researchers looked at a programme that addresses psychological aspects of fatigue as well as physical factors. The programme was well received by the 16 participants and there were significant improvements in how people felt they were coping and a trend towards a reduction of anxiety.1
- Thomas S, et al.
Development and preliminary evaluation of a cognitive behavioural approach to fatigue management in people with multiple sclerosis.
Patient Education & Counseling 2010;78(2):240-249.
abstract
Future of care consultation
In July, the Government published a Green Paper Shaping the future of care together, which highlights the challenges faced by the current care system and the need for radical reform.
The MS Trust recognises the need for a debate on the future care and support system. It is obvious that with an ageing population the cost of the current system is unsustainable. However the Green Paper seems to concentrate on care and support for older people, rather than those who are living with long-term disabling conditions like MS.
The consultation closed on 13 November 2009.
Priorities in the management of continence problems
Since 2007, the MS Trust has been part of a panel of charities, health professionals and academics working with the James Lind Alliance to identify areas of 'clinical uncertainties'. People with MS and health professionals were invited to complete a questionnaire listing areas of bladder management where they felt they were faced with uncertainty regarding the best choice to make. The list of prioritised uncertainties was made available in September 2009 prior to its publication in the journal Neurology and Urodynamics. The aspiration is that researchers will consider the priorities of people with the conditions as they plan future research.
Assisted suicide guidance published
In September the Director of Public Prosecutions issued interim guidance on whether people who help someone commit suicide are to be prosecuted. The move follows the Law Lords' ruling in June in a case brought by Debbie Purdy, who has primary progressive MS.
The guidance takes a compassionate view of the circumstances of each case, including whether the person had a clear and settled intention to commit suicide, whether they were encouraged or just assisted to do so, and whether those helping them will gain from their death.
The guidance, which is open for public consultation, is not a change in the law but a clarification of how it will be applied in England and Wales. Assisting a suicide remains illegal.
The consultation closed on 16 December 2009
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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.