Healthwatch Kingston Pulse Check report: Chronic fatigue syndrome (ME) and fibromyalgia services
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Healthwatch Kingston was approached by the Richmond and Kingston ME Group, to help raise awareness of the issues faced by people living with myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS) and fibromyalgia, also called fibromyalgia syndrome (FMS).
Myalgic encephalomyelitis, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness that can affect anyone, including children. It is more common in women.
Fibromyalgia, is also a long-term condition that can cause widespread pain.
In conversations with members of the Richmond and Kingston ME Group, Healthwatch Kingston heard, ‘the voices of people living with ME/CFS and fibromyalgia were not being heard, and that their conditions were largely misunderstood’. Survey respondents with ME/CFS shared that they also had symptoms of fibromyalgia and were being treated for both.
As long-term conditions are a focus in the Kingston Health and Care Plan 2022-24, and also a priority for Healthwatch Kingston (see pages 8 and 39 in our Annual Report 2022-23), we agreed to support this community engagement to find out more about the experiences of people living with ME/CFS and fibromyalgia in Kingston and what they thought about local health and social care services. This report adds ME/CFS and fibromyalgia services to Healthwatch Kingston’s other Pulse Check reports on diabetes, neurodiversity and MS (multiple sclerosis) services.
We know that people with ME/CFS have had difficulty in getting their illness acknowledged and the guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test for it.
Conclusion
The findings from this Healthwatch Kingston Pulse Check community engagement work have illustrated the need to not only raise awareness and understanding about ME/CFS and fibromyalgia with NHS and social care professionals, but also the importance of ensuring people waiting for an ME/CFS and/or fibromyalgia diagnosis are informed about the time it may take and that expectations are managed. Clarity for patients and professionals about ME/CFS and fibromyalgia care pathways between local GPs and specialist services would help provide the reassurance required through joined up care for people living with intermittent symptoms from these long-term conditions.
Thank you
Healthwatch Kingston would like to thank everyone that has shared their experiences to support our work. Your information will be used and stored for the purpose of this project, and in accordance with the Healthwatch Kingston upon Thames’ Privacy Statement which can also be provided in paper form on request by email: info@healthwatchkingston.org.uk.
Healthwatch Kingston Pulse Check report: Chronic Fatigue Syndrome (ME) and Fibromyalgia services and support Recommendations for service improvements
Recommendations for GPs (and other health and social care professionals):
1. Healthwatch Kingston recommends that GPs (and other health and social care professionals) ensure their patients are informed about the time it may take to confirm an ME/CFS or fibromyalgia diagnosis and the diagnosis process. GPs also need to explain the types of symptoms patients may experience, the treatment available (emphasising the need for continuity of care), and length of time it can take for referrals to specialist services after diagnosis.
2. Healthwatch Kingston recommends that patients diagnosed with ME/CFS or fibromyalgia, are referred to ME/CFS or fibromyalgia specialists and/or other appropriate services, so that plans can be developed for long term follow-up care (as recommended in the National Institute for Health and Care Excellence (NICE) ME/CFS guidelines, published on 29 October 2021).
3. Healthwatch Kingston recommends GPs and other health professionals offer/refer patients to mental health services and support as soon as an ME/CFS or fibromyalgia diagnosis has been made, to minimise delays in access to NHS mental health support.
Recommendations for South West London Integrated Care Board:
4. Healthwatch Kingston recommends that South West London Integrated Care Board work with secondary care providers to ensure patients with multiple and complex health conditions have access to nutritional advice for support with dietary needs. Healthwatch Kingston Pulse Check report: Chronic Fatigue Syndrome (ME) and Fibromyalgia services Page 6 of 30.
Response – Sue Lear, Director of Integration, Primary and Community Care (Kingston & Richmond)
"Locally the dietetic services are provided by Kingston Hospital and Your Healthcare. South West London NHS is committed to working with these teams to ensure that there is adequate nutritional advice and timely access to services."
Recommendations for South West London Integrated Care System (ICS):
5. Healthwatch Kingston recommends accessible information about community based ME/CFS and fibromyalgia services and support is provided via Connected Kingston, through Healthwatch Kingston’s ‘Find services’ online directory and also other relevant ICS member communication channels.
Response – Sue Lear, Director of Integration, Primary and Community Care (Kingston & Richmond)
"NHS South West London is happy to work with partners and Kingston Council who host Connected Kingston to ensure any community-based support services are included on the website."
6. Healthwatch Kingston recommends south west London health and social care providers consider travel support for people with ME/CFS and fibromyalgia if they are required to travel long distances to access specialist health and care services, as this can be difficult when you are living with pain and/or fatigue. This is particularly important when people need to travel to non-local services such as the CFS Service at Sutton Hospital.
Response – Chris Waters, Senior Primary & Community Care Delivery Manager (Kingston & Richmond)
"Health travel support eligibility for people with ME/CFS and fibromyalgia is assessed in line with NHS non-emergency patient transport services eligibility criteria (May 2022) B1244-nepts-eligibility-criteria.pdf (england.nhs.uk) This criteria is applied by GPs when patients are being referred for treatment and by the hospital if ongoing treatment is required and is based on the induvial patient meeting the eligibility criteria."
7. Healthwatch Kingston recommends south west London health and social care services provide ME/CFS and fibromyalgia awareness training to their staff and volunteers, with reference to the new NICE ME/CFS guidelines (published in October 2021).
Response – Sue Lear, Director of Integration, Primary and Community Care (Kingston & Richmond)
"The NICE ME/CFS guidelines published in October 2021 will be highlighted to The South West London Training Hub, which is a local partnership supported by NHS England Workforce, Transformation & Education, to be multidisciplinary networks of education and service providers to support the current and future primary and community health workforce. This can then be incorporated into any training programmes.
The guidelines will also be circulated to local service providers and GP’s to raise awareness with their staff."
8. Healthwatch Kingston recommends south west London health and social care services develop joined up care pathways and carer support, similar to those in place to support people with Long Covid (Post Covid Syndrome).
Response – Sue Lear, Director of Integration, Primary and Community Care (Kingston & Richmond)
"NHS South West London are committed to working with providers to ensure more joined up services to support people living with a Long-Term Condition. We will consider these specific conditions as appropriate through any pathway redesign that is undertaken, within the context of local Kingston Place priorities.
The aim would be to support people and their families/carers living with the condition who have received a diagnosis of CFS by the specialist service in SWL, at Epsom and St Helier Hospital."
Recommendations for Kingston Council:
9. Healthwatch Kingston recommends Kingston Council ensures that social care assessments of people living with ME/CFS and fibromyalgia consider the new NICE ME/CFS guidelines (published in October 2021 and be particularly mindful of the intermittent nature of these particular conditions.
10. Healthwatch Kingston recommends that Kingston Council assesses applications for ‘Blue Badges’ and other requests for access to services from Kingston Council, such as carer support / benefits / housing support / ‘Living Well at Home’ occupational therapy etc., with particular consideration to the intermittent nature of ME/CFS and fibromyalgia.
11. Healthwatch Kingston recommends that south west London Integrated Care Service leads commission Voluntary, Community and Social Enterprise (VCSE) organisations and groups to provide peer support while people are waiting for a ME/CFS and fibromyalgia diagnosis but also for after diagnosis.
