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 2015 survey of 850 people with M.E. found a considerable gulf between the support needs of people with M.E. and social care provision.
Close to collapse, an interim report of survey findings, found that 97% of respondents had two or more difficulties with activities of daily living. This means that, if their difficulties were found to have a significant impact on their well-being, the vast majority of respondents would have eligible support needs under the Care Act 2014 for England.
However, just 16% had received a social care assessment. Of these, only 6% had been awarded a care package - and these people told us that they found this support invaluable. One commented:
“My symptoms are better controlled so I feel much less ill. I am able to predict my energy levels more accurately and have fewer swings between relapse and over-activity.”
Another person with M.E. who had a care package said:
“I am clean and feel human for the first time in many years.”
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 2014 M.E. Time to deliver 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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