This page has been developed to support social care professionals who are working with people affected by the chronic neurological illness myalgic encephalomyelitis (M.E.). If you have feedback or suggestions regarding its content, please do get in touch.
Our film M.E. and social care aims to share information that will help you better support people with M.E. It features M.E. patient Sharon and her partner and carer Connor, and our medical advisor Dr Gregor Purdie, talking about the impact of M.E. on people's ability to care for themselves.
Severe and persistent fatigue or exhaustion most, or all of the time, is one of the main symptoms of M.E. This feels very different from ordinary tiredness. Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms.
The impact of this may be felt straight away but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise (sometimes called ‘payback’).
People with M.E. have low stamina for activities and need to space out appointments with you (and other health and care professionals) to avoid exacerbating their symptoms. They may also find that their capacity is generally greater at a specific time of day.
For further information, please read and/or download:
There is useful information regarding the care of people with severe M.E. in the NICE guideline for M.E., which states:
Action for M.E.’s 2019 Big Survey of over 4,000 people with M.E. found a considerable gulf between the support needs of people with M.E. and social care provision. When asked whether they had received a social care assessment only 14% said yes an only 1 in 10 had actually been given information on how to apply from their GP or local authority.
Of those who receive care from someone to help with daily activities we asked what the relationship with them was and the results show that 88% said it was a family member. We also asked this group what support the family members receive and they told us:
Our survey also asked people what they would like support for and 3 out of 4 people said they would like to to access more appropriate or different health or social care services. 41% would like it to challenge a welfare decision and 1 in 5 would like it to have their voice heard through a complaints process.
If you are in need of some support and live in the South West or West Midlands, you may qualify for our free advocacy service.
For those who hadn't been able to access appropriate social care, barriers to self-referral and fair assessment included:
Misunderstanding, misinformation and stigma surrounding the label of M.E. acted as a deterrent to asking for help for 38% of respondents and was also perceived to impact on the fairness of assessments and the type of support provided.
In addition, our 2019 Big Survey asked people with M.E. if they had had a social care assessment in the past five years. A considerable majority (82%) said no. This means that people with M.E. are potentially missing out on support with personal and domestic care, aids and adaptations for their home.
Our Close to collapse report also highlights the growing trend for reablement, and why it is cause for concern.
"Recent data on the outcomes of social care referrals in England showed that out of all requests for support from new clients, 12% resulted in short-term support to maximise independence and only 8% resulted in long-term support, or Home Care. Although our survey was not designed to collect data on what forms of social care support were provided, qualitative analysis yielded worrying evidence of the misuse of reablement among people with severe M.E./CFS. The 25% M.E. Group, representing people with severe M.E./CFS, reports the same concerns.
The NICE guideline for M.E./CFS does not recommend rehabilitative interventions for people with severe M.E./CFS and states that any therapeutic programme aimed at increasing activity levels should be carried out under the supervision of specialist M.E./CFS services.
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