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

Gecko · Oct 17, 2019

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.)

MEMarge · Oct 17, 2019

Have a good rest, you have been amazing.

Thankyou

Peter Trewhitt · Oct 17, 2019

Have so far not read it through thoroughly enough, but it is a very useful exercise.

ProudActivist · Oct 18, 2019

Thanks so much for doing this. A slog sounds an understatement!

Amw66 · Oct 18, 2019

Thank you @Gecko , an amazing achievement .

I hope it doesn't take too heavy a toll on you .

WillowJ · Oct 18, 2019

excellent work. Thank you.

Hope you have a good rest.

Tom Kindlon · Oct 19, 2019

https://twitter.com/user/status/1185616271829798912

https://twitter.com/user/status/1185616632300933123

https://twitter.com/user/status/1185617906207510528

Tom Kindlon · Oct 19, 2019

“CBT made no difference to the fatigue/PEM but left me feeling a bit of a failure as the psychologists view was that “this cure works” so the fact that it hadn’t was down to me.”
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https://twitter.com/user/status/1185653979860078595

Tom Kindlon · Oct 19, 2019

“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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https://twitter.com/user/status/1185655114985553922

Tom Kindlon · Oct 19, 2019

“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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https://twitter.com/user/status/1185669942722646022

Tom Kindlon · Oct 19, 2019

https://twitter.com/user/status/1185671819333947392

Tom Kindlon · Oct 19, 2019

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

Tom Kindlon · Oct 20, 2019

“Completely psychological explanation despite me already having been assessed by Cahms and no psychological issues found. They do not understand CFS/ME and wanted me to increase exercise by 25% every week. They know nothing about biomedical research or PEM.”
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https://twitter.com/user/status/1185942658159726592

Tom Kindlon · Oct 20, 2019

“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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https://twitter.com/user/status/1185943770870767619

Tom Kindlon · Oct 20, 2019

“I was offered CBT which did help me accept my illness a little better but this was misleading in the sense that I was told to keep exercising and that I would eventually recover. I did that and I'm STILL not recovered. And now I can't tolerate ANY type of exercise at all.”
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https://twitter.com/user/status/1185949904126001152

Tom Kindlon · Oct 20, 2019

“Lovely well meaning people but basic group presentations and three hour trip exhausting all of what I already had researched myself with a graded exercise recommendation which doesn’t help makes it worse.”
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https://twitter.com/user/status/1185950433308807170

Tom Kindlon · Oct 20, 2019

“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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https://twitter.com/user/status/1185962685436956673

Tom Kindlon · Oct 20, 2019

“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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https://twitter.com/user/status/1185964298478215169

Tom Kindlon · Oct 20, 2019

“CBT encouraged me to stop thinking of myself as having ME and a serious illness. They said everyone felt tired sometimes and did not accept ME”
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https://twitter.com/user/status/1186028460415901697

Tom Kindlon · Oct 20, 2019

“When I became severely ill I was pretty much ignored and I felt like a failure or that had I implemented CBT or something else correctly I would not have got worse. There was no support from specialists after I became severely ill. I now live in a care home and have had severe ME for 20 years.”
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https://twitter.com/user/status/1186029652458070019

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

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

Gecko Senior Member (Voting Rights)

MEMarge Senior Member (Voting Rights)

Peter Trewhitt Senior Member (Voting Rights)

ProudActivist Senior Member (Voting Rights)

Amw66 Senior Member (Voting Rights)

WillowJ Senior Member (Voting Rights)

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