Suffolkres
Senior Member (Voting Rights)
FOCUS Groups Opportunity
'Thank you,
In regard to patient representation, while we do not have a designated patient representative, each focus group will include a diverse mix of past, current, and waiting patients.
These groups are facilitated by a co-production lead with additional strategic support to ensure all voices are heard and that each group remains focused on our goals.
We feel this structure allows us to capture a broad range of perspectives without relying on a single representative.
For those unable to attend the focus groups, we have requested that questions and comments be submitted via email in advance.
This allows us to review any key points ahead of time and incorporate them into the discussions where appropriate.
Kind regards
Lucy Ainsley (she/her)
Programme Manager – Long Term Conditions Population Health Management Lead for SNEE
My working hours are 8am – 6pm Monday to Thursday.
Website: suffolkandnortheastessex.icb.nhs.uk
I hope you are well and thank you for your patience. The engagement opportunity is now ready to share with patients and family carers for their input on the combined pathway, to help shape the service spec. This will be shared urgently with all patients and family carers on the current pathways, for their opportunity to feed in and share amongst their networks. We will also use wider communications.
You can find this using the Lets Talk SNEE platform, a dedicated place for people and communities to take part in discussions and service transformation. Please use the following link to view, share and take part: Transformation of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME & CFS) and Long COVID-19 service pathway | Lets Talk SNEE
You may notice that this has replaced the page which was started following the 2021 NICE guidance, that yourself and the group contributed to previously. The team will use this engagement, and all insights, research and reports available to inform the new service spec.
In the time and scope for this transformation, at this late stage, I have advised this is the most appropriate method for this opportunity, and further work can be undertaken with people with lived experience to commission and evaluate the services moving forward, as agreed and planned by ICB colleagues.
Best wishes,
Su