This summer Sheffield ME & Fibromyalgia Group worked with Healthwatch Sheffield on the SpeakUp project, to help improve health and social care provision for people with ME/CFS and Fibromyalgia in Sheffield - and now we can share the results with you!
1. What is #SpeakUp?
Each year, Healthwatch Sheffield works with local voluntary, community, and not-for-profit groups, to help them to reach out to the people they work with. Their aim is to help more people across the city to have their say about health and social care.
This year Sheffield ME & Fibromyalgia Group were awarded a small grant to participate, so that we could capture the views and experiences of people in Sheffield with our conditions.
We wanted to help anyone with ME/CFS and/or Fibromyalgia in the region to speak up about what would make health and social care services in their communities better.
Our focuses were:
Improving access to health & social care support for people living with the conditions
Monitoring and promoting the implementation of the 2021 NICE guideline for ME/CFS
Using digital and printed surveys, and online and in-person focus groups, we were able to gather 150 responses about the lived experiences of people in Sheffield with ME/CFS and Fibromyalgia.
2. What did we find?
Our findings covered four main themes:
Individuals face a strenuous battle, from diagnosis to support,
There are many implicit and explicit barriers to accessing healthcare services,
Quality of healthcare is negatively affected by lack of knowledge about the conditions,
Awareness of eligibility for social care support is low - and provision is not adequate.
3. What do we recommend?
Following our findings, Sheffield ME & Fibromyalgia Group recommends:
More flexible appointment systems, particularly to accommodate the specific cognitive symptoms of this group,
Venue accessibility that account for the often-invisible needs of this group,
A streamlined process of diagnosis and pathway to support,
Increased training of health and social care professionals on the conditions, including the 2021 NICE Guideline for ME/CFS,
Health and social care staff ensuring that patients are aware of services they are entitled to,
Social care services giving individuals agency in their care and communicating processes in an accessible manner.
For our full findings, please see our report here:
For our our 2-page infographic summary, click here:
4. What's happening now?
NICE Guideline for ME/CFS: Information Sheet for GPs
Following the campaign, we have worked in consultation with members to produce an information sheet for GPs and other healthcare practitioners. This sheet outlines the key recommendations for treating ME/CFS from the updated NICE guideline (2021).
We are keen to ensure that all GPs in the area have up to date information about the illness, and are aware of what support is appropriate - and inappropriate - to offer. We would be really grateful if you could help us by sharing the sheet with your GP, and letting us know which GP practice you have shared it with.
If you would like to learn more about the NICE guideline for ME/CFS, you can find out more on our website here, or read the 3-page summary here from our Chair of Trustees, Carolyn.
#SpeakUp Working Group
On October 4th we hosted a stakeholder engagement event, to present the findings of our campaign to decision makers in the region. This included a wide range of representatives from NHS Sheffield Health and Social Care, Sheffield City Council, and other local organisations and charities who work with the illnesses we support.
We were grateful for the opportunity to share the experiences of people with ME/CFS and Fibromyalgia with people who make decisions about the care and services delivered to this group. We were also delighted by how engaged the attendees were in a community that, for too long, have been invisible and underserved by health and social care.
As a result of the engagement of the decision makers, we've been able to form an onging #SpeakUp Working Group to take forward our findings and enact meaningful change! We hosted our first follow-up meeting on November 22nd to discuss primary care (GPs), and are looking forward to meeting again in the new year to discuss ongoing care pathways and social care.
We aim to design and implement improvements for better health and social care for our community - and we look forward to sharing our progress with you. Watch this space!
