The results of a major survey into the health needs of people with ME/CFS, and how patients are being treated by GPs and hospitals – launched by Healthwatch Trafford last year – are still being analysed.
Almost 900 people completed the survey by the initial closing date in June last year.
Since then, local ME/CFS activist Karen Morris has been regularly pressing for publication of the report. She has learned that academics at Manchester Metropolitan University have been bought in to analyse trends thrown up by the interim 100-page report to make the results as meaningful as possible.
And Adam Webb, from Healthwatch Trafford, has told her:
“When it is completed, there will be the full report as well as a summary report, which will be shared with everyone involved as well as with every Healthwatch organisation in England, along with the results for their area. Please also note that the survey will remain open for the foreseeable future.”
Besides reopening the ME/CFS survey which contains 45 questions, Healthwatch Trafford has also launched a similar piece of work for people with fibromyalgia.
Karen Morris commented today (Thursday):
“You may remember that we posted information about a major survey of ME/CFS services launched by Healthwatch Trafford and supported by the Patients Association, last year. The survey asked 45 questions about your illness histories and then asked questions about how well they had been dealt with by your local health services – particularly at GP and hospital levels.
“Although the survey was based in the Trafford area of Greater Manchester, the questionnaire is available for any M.E (more controversially called CFS) patient within England, to be shared with other Healthwatches and published in a public report.
Unfortunately, there has not been a report published yet and I contacted Healthwatch Trafford to find out why. This is the response I received, which includes information on a new survey about Fibromyalgia Services. Do complete the survey and show them how you feel about services for this condition. Always keep a copy of anything you send.”
RESPONSE FROM HEALTHWATCH TRAFFORD
Hello
I just wanted to get in touch to share an update on what is going on with the ME/CFS survey we launched last year. It has been a simply huge piece of work which has attracted lots of attention, both nationally and (surprisingly) internationally and from media around the country.
Creating the report has been much more difficult than I ever anticipated. Having no background in research, I didn’t plan the project in the most efficient way and am now paying the price.
The report is currently over 100 pages long and still requires lots of work. However, we are now working with Manchester Metropolitan University to analyse trends and ensure that the report is of a high standard and as accurate as possible.
When it is completed, there will be the full report as well as a summary report, which will be shared with everyone involved as well as with every Healthwatch organisation in England, along with the results for their area. Please also note that the survey will remain open for the foreseeable future.
Find it at http://ift.tt/2aTvSnR
Following the interest in the ME/CFS work, we are currently undertaking a similar piece of work on Fibromyalgia. We have an intern from Manchester University working with us to conduct a survey on experiences of health services of those with Fibromyalgia. I am aware that due to the nature of the conditions, there are some joint ME/CFS and Fibromyalgia support groups and that many people have symptoms of both, so I would ask that you help us publicise our new survey and fill it out if appropriate.
Find it at http://ift.tt/2aGiGPQ
Thanks for all your help and patience, it is really appreciated.
Kind regards,
Adam Webb
Communications & Information Officer
Healthwatch Trafford
from ME Association
http://ift.tt/2aTvjKO
from http://ift.tt/1yk3j57
#cfsme
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