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Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME)

alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Skippa said:
THE DROP OUT RATE WAS HUGE. THERE WAS ONLY A 50% ATTENDANCE at the final session.
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NelliePledge

Senior Member
Messages
807
not reading it it is a complete waste of time anyway because these "specialist" clinics are on their way out due to reorganisation of services to bring them into line with the MUS nonsense :vomit:. Replacement services will deal with ME/CFS people alongside pain/fatigue etc so whatever awareness of ME there was from staff working with patients and learning about PEM etc will be watered down by generic people dealing with people generically. I had generic CBT before I went to the ME clinic and the ME clinic staff were (albeit within the BPS context) much better. The CBT service supposedly had experience of dealing with people with ME/CFS yep by looking stuff up online in their manual. Even as someone who had only been diagnosed a matter of weeks I knew vastly more than the poor woman I think she was glad to get me off her books after 6 weeks :D
 
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user9876

Senior Member
Messages
4,556
Dolphin said:
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6/open-peer-review

Previously with open peer review, you got to see the authors' responses. Now you have to request them. If anyone gets them, I would be interested in seeing a copy. If you are refused access, I would be interested in hearing about that also.
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I could see the peer review using that link but it wasn't very detailed and no second round review was given

Philip Keeley said:
Reviewer's report:
Thank you for submitted this well written paper.
The rationale for the study is clearly stated.
The study design and methods are described well and are appropriate.
Minor typographical error page 4 - 'principle' should be 'principal'. (Otherwise spelling is
exemplary).
It is good to see that you worked with a Patient Reference Group to develop the interview
protocol.

Results are presented clearly, though I noticed that median duration of self-reported duration of illness was 7.5 years for participants. Can you state that the sample was representative of patients treated by the 3 services when their median duration of illness was 2 years? I recommend that you address this in the paper. There is a concern that your study focusses on the more long-term patients.

Did you consider adding anonymised identifiers to the quotations used in the paper? This could reassure readers that the quotations come from a range of sources.

I am unclear why the final paragraph on page 7 is included in the 'Role of GPs' sub-
theme.

The section on 'Mutual support' section could be restructured to present preconceived barriers to recruitment before actual positive experiences.
When considering discharge support I wondered whether 'continuing self-management' was a discrete aspect of the programme / discharge plan.
Overall, this is a well crafted and timely paper. I have offered suggestions for you to consider in order to strengthen your pape
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David Scott said:
Thank you for the opportunity to review this paper examining Adult patient's experiences of NHS specialist services for CFS/ME. On the whole the paper is interesting, easy to
follow and generally very well written. The methods section is clear and the authors have taken a logical approach both in terms of study design and analysis. My main concern when reading the paper was how representative this small sample of participants may be? The authors do address these issues in both the discussion and the limitations section of the paper but I do feel this is the main weakness of the study. The authors describe the population as being similar to the 250> who attend specialist services each
year although no details to support this are provided. From a readers perspective it may have been useful to know something of the population of participants who attended the three services described during the period July - September 2014 but who did not agree to participate. It is worth noting that the authors acknowledge that the study participants are people who successfully completed treatment and consequently there experience may be different to those who drop out of the service.
Again, I think the Discussion section is clear and well written and the authors acknowledge the limitations of the study. I find their discussion of pathways and the important role of the G.P. as gatekeeper to be both appropriate and interesting.
I did notice a typo on page 18 line 30 "our study provides illustrates" - only one verb is required
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Esther12

Esther12

Senior Member
Messages
13,774
Dolphin said:
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6/open-peer-review

Previously with open peer review, you got to see the authors' responses. Now you have to request them. If anyone gets them, I would be interested in seeing a copy. If you are refused access, I would be interested in hearing about that also.
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Dolphin said:
Yes, but you have to request the authors' responses.
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Is this becoming standard for open peer reviw now than? Seems to rather defeat the point of open review. I've seen it with a few responses from the Crawley team, and I don't recall seeing it with other open review responses, but it's possible that I've only been looking at peer review from Crawley's team recently.
 
Orla

Orla

Senior Member
Messages
708
Location
Ireland
I spoke to a research nurse once who told me you can't rely on patient satisfaction surveys to give you good information on whether a service is really good/useful or not as patients will normally say they were happy with it (I think based on personal interactions with the staff, and it doesn't mean the treatment is good). It has made me suspicious ever since of patient satisfaction surveys and the like, (though I remember one local patient group in the UK did a survey of people on their mailing list who had attended the local ME Clinic and the results were terrible for the clinic.).

Soon after that I happened to be sent a survey to fill out regarding my experience of a small procedure at a local hospital. I had been on a waiting list at a local public hospital for a small procedure, and once you are on a waiting list for a public hospital long enough you often get referred on to get the procedure done at a private hospital. I don't agree with this system, as it is basically a way of shifting public cash from the public hospital system to the private hospital system. It would be one thing if this was only done in emergencies and the like, but now the healthcare system relies on this method of sending public patients to private clinics.

I didn't fill out the survey (they sent it to me a few times) as though I was happy with the particular doctor and treatment , I was not happy with the initial long waiting-list and the privatisation of the public service, but there was no way of noting this in the survey. I think the survey was very general, and annonymised, and I don't think it would have been linked back to the doctor I saw, so it would have done him no good for patients to send in a good rating anyway (as far as I can remember it was a very generalised thing, probably sent out nationally). I knew there was a good chance the survey was deliberately designed to garnish a good result, so that the government could say that people were happy with the service, but it wouldn't mean that people were happy with this system overall.
 
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NelliePledge

Senior Member
Messages
807
I deliberately didn't fill in my questionnaire on the last session of the 8 week NHS course as I wanted to reflect and make clear which were the positive aspects and which weren't useful. Everyone else quickly filled them in and handed back the paper forms. They were all collected by the people running the sessions so easy to identify individual responses. To make it so people gave genuine feedback they should have used survey monkey so that your replies were anonymous.
 
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Dolphin

Senior Member
Messages
17,567
trishrhymes said:
It's probably someone's PhD. They take a few years. Then she had to find a publisher. Then it took 3 goes to get through peer review. First submitted to this publisher last August. Makes the time lag less surprising.
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You could well be right that it is someone's PhD. I had a quick look and couldn't find it here: http://ethos.bl.uk

If anyone finds it, perhaps they could post a link as it might be interesting to see whether the thesis was much different/contained any extra interesting information.
 
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