Closed Your experience of ME/CFS services - Take the survey by #MEAction UK

Gecko

Gecko

Senior Member (Voting Rights)
The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee.

Take the survey

The survey asks about advice given on managing your symptoms when you first spoke to a healthcare professional about your symptoms and your experience at ME/CFS clinics in the UK, including the treatments and advice provided. It also asks what you would have found most helpful in hindsight.
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The deadline for responses is 7th October 2019.

Read the article: https://www.meaction.net/2019/09/23...-cfs-services-take-the-survey-by-meaction-uk/

Direct link to survey: https://docs.google.com/forms/d/e/1FAIpQLSctFA1c3AOKV9dCgAtEQRpY5AHkKVnNcafFdd2xbbaMPuULAg/viewform
 
MEAction piece talks of UK - but NICE guidance per se does not apply in Scotland ( although things tend to get extrapolated for numerous conditions) . Does this therefore place a limit on the eligibility to participate in the survey?
Note that there are not too many ME/CFS clinics here.
@EspeMor
 
Welcome to participate in Scotland - whilst true that Scotland has it's own statement of good practice all the government and NHS bodies are really looking to NICE to define what diagnosis, services and interventions should look like for people with ME. @Amw66
 
Amw66 said:
MEAction piece talks of UK - but NICE guidance per se does not apply in Scotland ( although things tend to get extrapolated for numerous conditions) . Does this therefore place a limit on the eligibility to participate in the survey?
Note that there are not too many ME/CFS clinics here.
@EspeMor
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Gecko said:
Welcome to participate in Scotland - whilst true that Scotland has it's own statement of good practice all the government and NHS bodies are really looking to NICE to define what diagnosis, services and interventions should look like for people with ME. @Amw66
Click to expand...


Yes, exactly as @Gecko said. Thank you all!
 
Are respondents to this survey only expected to refer to the NHS services they have experienced or are they expected to review the various private and charitable services for people with ME/CFS they may have attended?

The survey introduction says: "You may take part if you have a diagnosis of ME, CFS or ME/CFS and have attended an ME/CFS clinic in the UK. If you have attended more than one ME/CFS clinic in the UK please fill out this survey once for each clinic you have attended." I believe all the NHS hospitals talk about 'services' now rather than 'clinics' but some private ones refer to their ME/CFS clinics

As far as I can see there's nowhere on the survey to state that you're filling in the survey for more than one service or clinic. Does that not matter or am I missing something?
 
I have never been referred for CBT or GET in relation to my ME, so I had to use the comments box to describe the harmful effects of what the consultant said when I was originally diagnosed back in 1993. However, I hope the comments (as well as the survey question results) get taken into account, because some GPs I've seen also take a similar dismissive approach to the dangers of increasing activity - it's actually been an ongoing problem throughout the decades of having this disease.
 
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packhorse5 said:
Are respondents to this survey only expected to refer to the NHS services they have experienced or are they expected to review the various private and charitable services for people with ME/CFS they may have attended?

The survey introduction says: "You may take part if you have a diagnosis of ME, CFS or ME/CFS and have attended an ME/CFS clinic in the UK. If you have attended more than one ME/CFS clinic in the UK please fill out this survey once for each clinic you have attended." I believe all the NHS hospitals talk about 'services' now rather than 'clinics' but some private ones refer to their ME/CFS clinics

As far as I can see there's nowhere on the survey to state that you're filling in the survey for more than one service or clinic. Does that not matter or am I missing something?
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There is an option to choose "private clinic" under the drop down question asking which clinic you attended.
And yes I see that is confusing - it was slightly a limitation with the software that we couldn't route people back to answer the same questions about a different clinic, so agreed asking people to fill in the form again was the best option. Since you're required to choose which clinic/service you attended, this should differentiate between responses. Please skip the questions about management before diagnosis if you are taking the survey a second time.

Simbindi said:
I have never been referred for CBT or GET in relation to my ME, so I had to use the comments box to describe the harmful effects of what the consultant said when I was originally diagnosed back in 1993. However, I hope the comments (as well as the survey question results) get taken into account, because some GPs I've seen also take a similar dismissive approach to the dangers of increasing activity - it's actually been an ongoing problem throughout the decades of having this disease.
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I very much intend to analyse the comments so they are taken into account in the survey report, how thoroughly I'll be able to do this in the 9 days we have after the deadline and before we submit to NICE is to be seen, tho I'll have help from the #MEAction UK team. And I woulda thought we will be able to send all the comments in to NICE as part of the report anyway. Sorry you've been experiencing such dismissive approaches for so long.
 
Well I came across an issue with it on 2nd page of questions...

What advice did your HP give you about activity while feeling ill
a)increase it
b)decrease it
c)wasn't given any advice

Do you think following the advice you were given when you first spoke with a healthcare professional about your symptoms impacted your illness?
a)yes I deteriorated after following it
b)yes I improved after following it
C)no it made no difference

err.... where is the option for "I didn't follow the advice"...
- when he told me to go swimming twice a wk I thought he was insane & ignored it... Knowing that the journey to the pool plus changing etc plus sensory overload, would leave me so weak I be barely able to hold my head up..… I didn't fancy drowning.
 
JemPD said:
err.... where is the option for "I didn't follow the advice"...
- when he told me to go swimming twice a wk I thought he was insane & ignored it... Knowing that the journey to the pool plus changing etc plus sensory overload, would leave me so weak I be barely able to hold my head up..… I didn't fancy drowning.
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If I couldn’t even put my shoes on, I didn’t take the dog for his walk. Not quite as dangerous as drowning. But certainly falls into the “I didn’t follow the advice” category.

I added relevant comments into the notes on the final page of any important points (even though I, of course, thought of many more after pressing Submit!).

I did add that I appreciated the opportunity to supply my ‘evidence’ to NICE as we are all the Experts by Experience on this disease.
 
Last chance for you to have your say about initial advice you received during diagnosis process and what you think of NHS clinics!
Survey ends at 5pm today

#MEAction Network UK

@MEActNetUK

REMINDER! 24 hours until the deadline: Help us hit 2,000 responses


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#MEAction Network UK

@MEActNetUK
· 5 Oct
We are thrilled to have over 1,800 responses to our survey of UK ME/CFS services! Thank you each & every one


NOW: Help us reach 2,000! by 5pm on Monday 7th Oct. RT, share & email #pwME Let’s be the strength of our numbers! Complete the survey


http://ow.ly/MM1S30pFscy
5:00 pm · 6 Oct 2019
 
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