M.E. and social care
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.
Impact of symptoms
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.
Around one in 200 children and young people are estimated to have M.E./CFS. There is currently a lack of paediatric specialists in the condition, meaning specialist medical help and support for families is frequently inaccessible.
Implementing the Care Act for people with fluctuating, long-term conditions, a briefing contributed to by a number of patient charities, including Action for M.E., briefing sets out local authorities’ key responsibilities under the Care Act in relation to people with long-term, fluctuating conditions with care and support needs.
Our self-advocacy toolkit, Nothing about M.E. without me, can support your client with M.E. to set out their symptoms, needs and wishes in a straightforward way.
When children and young people with M.E. and their families come into contact with social services, it is often due to inappropriate referrals which place concerns in a child protection context, rather than recognising that young people with M.E. are children in need. Our resource for Children and Families Social Workers aims to improve this situation by offering information and practical advice so they can better support their clients, and work more effectively with other health and care professionals.
The National Institute for Health and Care Excellence (NICE) guideline for M.E. (undergoing essential updates, though this process is on hold due to the Coronavirus pandemic) shares the following regarding the care of people with severe M.E.
- The symptoms experienced by patients with severe M.E. are diverse and debilitating, and these may fluctuate and change, both in type and in severity. It is therefore important that the management and care plan is flexible and reviewed regularly.
- The input of different professionals should be coordinated by a named professional.
- People with severe M.E. should be offered a summary record of every consultation because of their cognitive difficulties.
- A full functional assessment of the personal and domestic needs of the patient within the home should be completed (for example, people with severe M.E. are often sensitive to light, noise and chemicals, so may require quiet, dark surroundings with no or limited use of household products such as cleaning products or air fresheners), as well as an assessment of the carer’s needs.
Reablement and 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., it is clear that:
- reablement is not appropriate for people with M.E., particularly the one in four 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.