News
Open Door - February 2011 page 3
Changes to benefits
Disability Living Allowance (DLA) has been around for a long time and as the gateway to other aspects of support proposed changes were certain to be concerning. The real question is will the new Personal Independence Payment (PIP) encourage independence or is it just a cost saving exercise?
The MS Trust is worried that proposed changes to the assessment and allocation of PIPs may have adverse effects for people with MS. In particular we have the following concerns:
- How will the government ensure that people with MS are not penalised for making personal efforts to manage their disabilities and increase their quality of life?
- What does the government mean by stating that they wish to update the definitions of disability?
- How will aids and adaptations be taken into account in the new assessments? An aid or adaptation only aids - it does not solve the problem, the disability still exists. DLA is often the means for people to fund both the purchase and maintenance of such aids.
- Will the assessments be sensitive enough to the fluctuating nature of MS?
- How will the new reforms handle those people who have currently been told they have DLA for life?
The deadline for responding to the consultation has been extended to Friday 18 February.
Find out how to respond to the consultation
MS news in the press - handle with care
Everyone is looking for the next great breakthrough in managing or reversing MS. A couple of stories in December illustrated why the promise in the headlines should be treated with a degree of caution.
Reports of advances in the understanding of the role of stem cells by researchers in Cambridge and Edinburgh created much excitement1. However, different groups will see these results in different ways. For researchers, this study, which was laboratory based involving rats and also donated tissue, is a breakthrough. It suggests a mechanism by which cells in the body might be encouraged to replace damaged myelin and repair damage caused by MS. Further work will be required to identify if a safe and effective drug can be developed to trigger this process. The researchers estimate that this might take 15 years.
For many people with MS headlines such as Stem cell finding could reverse ravages of multiple sclerosis2 are both exciting and frustrating. A great deal can happen to someone with MS in 15 years. Where the researchers see this news as a great step forwards, for someone living with MS the research process can seem glacially slow.
Another story with the headline Eating purple fruit could fend off Alzheimer's disease and multiple sclerosis3 seemed pretty clear cut. However the underlying research is proposing a theory based on the effects of chemicals, some of which can be derived via diet, binding with iron in the blood. NHS Choices criticised the news story saying, "Unproven theories raised in the review are presented as definite fact in the newspaper article."4
The press needs new stories to sell papers and will often report early or theoretical research, particularly in headlines, as immediate breakthroughs in treatment. This can often do no benefit to researchers, whose important work can be made to look slow or unproductive, and for people with MS can seem like a succession of raised and dashed hopes.
The MS Trust will continue to try to distil the facts from the hype.
References
- British stem cell research raises possibility of future treatments to repair MS damage - MS Trust news item 6 Dec 2010
- Stem cell finding could reverse ravages of multiple sclerosis - Daily Mail 6 Dec 2010
- Eating purple fruit could fend off Alzheimer's disease and multiple sclerosis - Daily Telegraph 8 Dec 2010
- Purple fruit health claims are premature - NHS Choices 8 Dec 2010
Constipation
An article in the November issue of Open Door presented one woman's story of managing constipation due to her MS and how Movicol had not helped her. We know from calls to the Information Service that this one experience is not typical and for many people Movicol is a critical element of their bowel management.
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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.