By Erica Verrillo
“I don’t have the strength to organise care for myself, so I am just struggling through doing what little I can. I manage to wash or bath about twice a month. My house is filthy and I am smelly. My meals are limited to the most simple, mostly microwave ready meals. At times this makes me suicidal.”
Close to Collapse, a report, based on findings from a survey carried out by the UK charity Action for M.E., shows a shocking lack of social care for adults in the UK with ME/CFS. A total of 850 patients took part in the survey.
The report showed that while a staggering 97% of respondents experienced two or more difficulties with daily living, only 16% had received social care assessments, and only 6% had been awarded a care package to help them with daily living.
Patients reported that a number of barriers prevented them from getting the help they needed.
lack of clear information about social care process and entitlements (58% of respondents)
cognitive and communication difficulties preventing engagement with social care processes (47% of respondents)
social care processes ill-adjusted to the very poor stamina of people with ME/CFS
misunderstanding, misinformation and stigma surrounding the label of ME/CFS acted as a deterrent to asking for help for 38% of respondents and was also perceived to affect the fairness of assessments and the type of support provided.
Common sources of misunderstanding were the perception that ME/CFS is a common form of fatigue that best remedied through exercise, which meant care needs were not taken seriously, a lack of understanding of fluctuating needs and post-exertional malaise and the misdiagnosis of primary depression. According to one patient:
“The community service worker mistook my cognitive symptoms for depression or anxiety. She told my consultant that I was afraid of activities of daily living. It was recommended I see a psychiatrist and I was questioned under guidelines of Mental Health Act and I thought I was about to lose my freedom.”
It was clear from the comments made by respondents that service providers relied on the PACE trial for much of their information. (The PACE trial concluded that exercise could lead ME/CFS patients to “recovery.”) One patient reported:
“The social worker said I should go swimming every week and do more exercise, even though she could see I couldn’t even stand up without falling onto the floor and my legs were going into visible spasms on that day.”
While most of the respondents said their situation would be “a little better” (25%) or “a lot better” (50%) if they had someone to represent them, patients had very little access to representation. Four out of five (80%) of the respondents said they had not contacted an advocate.
Action for ME called for better representation for people with ME/CFS, describing the need as “acute and urgent.”
“There’s overwhelming evidence that the majority of people with M.E./CFS are not receiving the social care and support to which they are entitled,” wrote Sir Peter Bottomley, Chair of the All Party Parliamentary Group on ME. “It’s also clear from the results that, for the small number who do receive personalized and appropriate support, the benefits can be significant. However, better access to advocacy is needed to facilitate their involvement in social care processes.”
Action for ME intends to follow up their report with a formal inquiry supported by the All-Party Parliamentary Group for ME. They will gather further evidence of the “challenges that people with M.E./CFS experience in accessing social care and receiving the right support for their needs.” The inquiry will also identify examples of best practice, and constitute a “call for changes to improve the lives of everyone affected by ME/CFS.”
You can read the full report HERE.