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Reablement not appropriate for people with M.E.

June 01, 2017

Action for M.E. has responded to a National Institute for Health and Care Excellence (NICE) consultation on Intermediate care including reablement stating that reablement is inappropriate for people with M.E.

Reablement is provided by community-based services and intends to help people recover skills and to maximise their independence.

The post-exertional malaise experienced by people with M.E. means that this approach can worsen their symptoms. In our 2015 survey, one person told us:

“My social worker believes that with a short-term care package (four to six months) there should be ‘noticeable improvement’ in my level of independence. If there isn’t when my care is reviewed she said they will remove my carers as ‘their goal is to promote independence and not dependence.’ I’ve tried to explain that severe M.E. doesn’t work like that, I often have paralysis, I’ve orthostatic intolerance, physically can’t turn in bed etc. Managing personal care and giving me meal replacements isn’t promoting dependence as there are things I physically cannot do. She replied, ‘Well that’s the way our care system works.’”

Based on evidence from people with M.E., in our consultation response we have said:

  • Reablement is not appropriate for people with M.E., particularly the 25% of those with the condition who are severely affected
  • Offering reablement as a first option to people being considered for homecare will lead to adverse outcomes for people with M.E.
  • Research on the efficacy of reablement does not differentiate between condition groups and does not represent the experiences of people with M.E.
  • There needs to be a clearer distinction made throughout the guideline between reablement and care, and explicit statement that reablement is not appropriate for all individuals