We have been holding meetings with Greater Manchester Integrated Care who are currently reviewing ME/CFS provision in Greater Manchester in light of the new NICE Guidelines from November 2021.
We (along with the Bury and Bolton Group) are supporting Greater Manchester Integrated Care in holding a couple of public engagement sessions on Zoom. These sessions are an opportunity for you to share your experiences and say what services you would like to receive.
If you are on Facebook then it would be helpful if you could sign up for the event of your choice so we can do some planning in terms of note takers and facilitators. Sorry about the short notice although we have been alerting our members to “save the dates” whilst we sorted some of the details out.
https://www.facebook.com/events/736457788111925 – 28th March event
https://www.facebook.com/events/1346568952741947/?ti=ls 4th April event
We have added some details at the bottom in the form of a “themes” document so people know a little bit more about what to expect at these events. Each session will last 1 hour 15 minutes. If you want to give feedback in written form you can email it to smeg2244@yahoo.co.uk. If you do so you could reference the Themes document if you wish but you do not need to.
Thanks
SPEAK UP!
NHS Greater Manchester Integrated Care which is the statutory organisation in Greater Manchester for commissioning services on behalf of the 2.8m population is undertaking a review of ME/CFS services in Greater Manchester. We would like to invite you to join a patient engagement event to hear views and experiences in order to inform the review, its findings and any recommendations. We are working in partnership with the Stockport ME Group and Bury and Bolton ME/CFS & Fibromyalgia Support Group and would value your input.
We are running the engagement sessions across three dates 28th March
and 4th April, both at 12.30 via Zoom and a third (date to be confirmed) specifically for people who have developed ME/CFS or similar symptoms from COVID. The aim is that people only attend one of these sessions. Details are at the bottom of this message. If you are not familiar with Zoom and wish a one to one session assisting you in this then please email Stockport ME Group at smeg2244@yahoo.co.uk at least a day in advance of the session you wish to attend.
There will also be the opportunity to feed in your views outside these two sessions if you feel more appropriate. You can do this by emailing Stockport ME Group if you wish your details to be anonymised at smeg2244@yahoo.co.uk.
These feedback sessions will be focussed on adult services. We do welcome written feedback on the experiences of children, adolescents and their families. We are keeping the Long COVID session separate as the route of diagnosis and treatment is usually different.
More information on what to expect in the session will be added shortly.
Details
Stockport ME Group is inviting you to a scheduled Zoom meeting.
Topic: NHS Greater Manchester ME/CFS Patient Consultation
Time: Mar 28, 2023 12:30 London
Join Zoom Meeting
Meeting ID: 848 6532 9353
Passcode: 682066
One tap mobile
+6531651065,,84865329353#,,,,*682066# Singapore
+6531587288,,84865329353#,,,,*682066# Singapore
Dial by your location
+65 3165 1065 Singapore
+65 3158 7288 Singapore
+49 69 7104 9922 Germany
+49 695 050 2596 Germany
Meeting ID: 848 6532 9353
Passcode: 682066
Find your local number: https://us02web.zoom.us/u/kecLYnV84o
Stockport ME Group is inviting you to a scheduled Zoom meeting.
Topic: NHS Greater Manchester ME/CFS Patient Consultation
Time: Apr 4, 2023 12:30 London
Join Zoom Meeting
Meeting ID: 814 3584 4128
Passcode: 911053
One tap mobile
+6531587288,,81435844128#,,,,*911053# Singapore
+6531651065,,81435844128#,,,,*911053# Singapore
Dial by your location
+65 3158 7288 Singapore
+65 3165 1065 Singapore
+49 695 050 2596 Germany
+49 69 7104 9922 Germany
Meeting ID: 814 3584 4128
Passcode: 911053
Find your local number: https://us02web.zoom.us/u/kJ6hoKf9E
Will there be an evening or weekend session to allow consultation with carers and family members please? 1230 on a work day isn’t possible for most working carers
These two sessions are the only two planned with NHS staff taking notes in the current format – although we might have one linked to Long COVID. We were working around NHS staff and volunteer availability. However you can either make written submissions ( we are finalising some guidance on that) or you could have a 1-2-1 session with a volunteer going through your experiences and views and have them logged so that they can be considered as part of the review. One of Stockport ME Group committee will contact you by email to see what you wish to do.
This also goes for others who read this. Although if enough other people are in the same situation and keen for a group meeting then we might be able to accommodate that.