Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

Gecko

Gecko

Senior Member (Voting Rights)
Your experience of ME services - Survey report by #MEAction UK

Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/

Full report: https://www.meaction.net/wp-content...-ME-services-Survey-report-by-MEAction-UK.pdf

Results included:
Management strategies during assessment for diagnosis:
  • Results showed that healthcare professionals are commonly providing advice to maintain or increase activity during this period. Almost 9 out of 10 respondents deteriorated having followed this advice, compared to less than 1 in 10 who were told to rest.
Methods of monitoring and/or reviewing:
  • Results identified that there was a failure of services to provide ongoing support or follow up which left respondents feeling abandoned andwithout help.
  • Respondents thought that services should be led by a consultant, with support from professionals trained in the causes and impact of ME.
People’s experience of interventions for ME/CFS:
  • The experience of respondents showed that many ME services are providing unsuitable advice and treatments that often have a negative impact on patients’ health.
  • CBT was not helpful to a majority of respondents.
  • Advice received on activity management and increasing activity was contrary to what respondents reported would have been most helpful inhindsight.
  • Respondents were commonly pressured to undergo treatments.
  • Overall, respondents wanted current services either to adapt or to be entirely rebuilt with patient input, confirming that current services arefailing to meet the needs of patients.
  • Almost half of respondents said they were neither better nor worse (48.1%) after attending an ME service. Of the 51.9% of respondents who reported that attending the clinic changed their health status, over twice as many reported they were worse having attended the clinic than reported improvement.
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Been a slog to get this done in time, but very glad we put in the effort, and hopefully it can be well used by the lay members on the NICE committee. 2,370 comments qualitatively analysed, all of which have been sent to NICE in the appendices, 43 charts included in the report. Check out appendix 1 for breakdowns of different questions by service attended.

(I'm gonna be taking some time away from laptop so may not be very responsive for a little while.)
 
“I know that if I had been told immediately by my GP to rest, when I was mild, I would have dropped out of university then and stabilised and I would not be in this position now - where I cannot speak much, cannot move unaided and cannot even sit up or eat by myself. It has done me so much harm.”
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“I had to fill in an activity sheet at the beginning which had a week of time split up into hourly blocks - this was difficult to complete as I could barely sustain any activity for more than a few minutes and was mostly resting. They seemed to assume that everyone would have a 'boom and bust' activity pattern and the advice given (which was supposed to be based on my own activity chart) was clearly generic.”
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There are some external appendices that might get missed:

See Appendix 3 for the full list of comments from respondents who had not attended a specialist ME clinic.
https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf

See Appendix 4 for further categories of mentions that received less than 10 responses each and the full list of comments made under ‘other’.
https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf

See Appendix 5 for the full list of comments explaining respondents’ views on the future of UK clinics.
https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf

Final comments:
https://www.meaction.net/wp-content...ence-of-ME-services-report-by-MEAction-UK.pdf
 
“Hull is run by the Psychological Department they think it has a psychological base and therefore are not interested in biomedical research or approach. I was told in the first session that if we were going to work together, I would have to accept that there was an emotional element to the cause of my illness. The counsellor admitted she had no experience of ME/CFS and expected me to be able to get to the appointment and then talk for an hour, and just kept asking what I was going to do about it, and then went off sick herself.”
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“I was given a DVD about pacing and symptoms which was helpful in some ways but I was given no help from a ‘person’ and pacing only works if you are given state aid otherwise how can you work and pace. Also it is impossible to pace properly without carers, help with housework, shopping, preparing food etc which we are not offered.“
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“The pressure I felt to comply with treatment (GET) was subtle - I wasn't harassed into it but as I trusted the staff treating me I wanted to do my best to follow the programme even though I was clearly struggling. I was made to feel that failure to improve following this approach was down to a flaw in my personality- i.e. being too anxious and analytical- I realise now it was simply because I was too ill for GET and the struggle to succeed at it was very damaging- physically and emotionally/ psychologically. I am still severely ill 5 years later.”
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