If you took part in the Healthwatch survey of NHS ME/CFS services, you will be disappointed to read the following open letter from ME patient Karen Morris, who initiated the project. The information from such a large survey will be a very valuable resource and it is a matter of great concern that it is not apparently being shared in the way that was promised. After so much effort and – presumably – expense, why should the anonymised results be kept under wraps? Karen has given permission for the letter to be reposted.
Update: Following this post, there have been some very helpful responses on Twitter from Healthwatch Trafford offering to make the survey info available when it has been anonymised and explaining that they are still hard at work on the survey. All of which sounds promising. It will be interesting to see the results…
Open letter to:
Trafford MPs: Kate Green, Graham Brady, and Mike Kane.
Cc: Healthwatch England
In November 2014, I created a project for Healthwatch Trafford to allow M.E. (CFS) patients to give good and bad feedback on health and care services through a survey. Healthwatch Trafford made this available to M.E. patients throughout England. I am extremely grateful to Healthwatch Trafford for this.
Healthwatch told me told that this is one of the most successful responses, with 880 patients from England completing the survey within the first month (by 14 June 2015) and probably a lot more since.
The results were to be: –
1. Placed in a report written by Healthwatch Trafford.
2. Sent to the other relevant local Healthwatch.
3. Sent to Healthwatch England, to see if it was a national issue.
4. To use the information to improve health and care services for patients with ME (CFS).
To my knowledge, this has not happened, except results being forwarded in Greater Manchester. I have sent regular emails and given a reasonable period of time – It is now March 2016.
I am no longer have confidence that this will happen to a professional standard. I an concerned about the wellbeing of the patients involved, some of which may be children.
This is a large project so I have tried to provide as much support as I can even though it is a Healthwatch project. This includes creating the project, designing the survey, suggesting survey monkey to save resources, promoting and coordinating, setting up meetings, and including as many charities and patients as possible to be fair, inclusive and transparent.
I am also now concerned for own wellbeing as I feel my medical neglect has gotten severely worse since starting this project, leaving me in a very vulnerable state and in need of urgent medical help, which I have requested many times over a long period.
My only intention was to give polite evidence-based feedback to improve services (NHS Constitution). There is no reason why patients with ME (CFS) should not be able to do this.
I would like the results to be made public and forwarded to other local Healthwatch and Healthwatch England as a matter of urgency, without breaching confidentiality (medical and complaints notes are confidential and not part of this project).
I have requested to my MP that a different professional organisation now create this report.
ME CFS Manchester