In this article we talk about the recent launch of the Isle of Man's ME/CFS and Long Covid specialist service and the ME Association's continuing initiative that aims to improve health and social care services by working with the NHS and social care providers to effectively implement the NICE Guideline recommendations.
The Isle of Man
On Monday, the Isle of Man officially launched a specialist service for people with ME/CFS and Long Covid. It is a fantastic achievement after many years of hard work.
The alignment of priorities by patient volunteers, carers, specialist clinicians, specialist medics, management, commissioners and politicians seen on the Isle of Man is virtually unparalleled. It should be an example to other areas in the UK of what can be achieved when working together and we hope others follow this lead. The courage, tenacity and hard work of the ME/CFS community on the island is inspirational.
The new service promises to deliver accurate diagnoses and help people learn how to live with these debilitating medical conditions adopting the recommendations made in the NICE Clinical Guidelines. We hope the new service will bring a positive change to the lives of affected people on the island.
It made sense for the Isle of Man to have a combined service delivering good quality healthcare and we invite healthcare commissioners in the UK to take notice of this important development. Long Covid has much in common with ME/CFS and healthcare professionals who are involved with Long Covid can learn from the approach to early recognition, diagnosis and management that has been adopted in ME/CFS.
Video
This dramatic video – commissioned by ME Support (IOM) – marks the launch of the new service and features the horrifying experience of a local family in the 1980s, missed opportunities to act sooner, and the intense advocacy that finally brought positive change.
Recent media coverage:
- BBC News: Manx Long Covid and ME/CFS sufferers welcome bespoke service launch
- IOM Today: ME and Long Covid service launched
- Manx Radio: Island’s ME/CFS and Long Covid service officially launched
- Manx Radio: Patients welcome increased support for ME and Long COVID
The ME Association's Local Area Initiative
The ME Association has always considered the provision of good quality health and social care for people with ME/CFS to be a top priority. Decisions made in local areas, by Integrated Care Boards and Health Authorities dictate funding levels and service design. We have been working with ME Support (IOM), other regional and local charities, and patient support groups for many years to influence these decisions.
Ever since the NICE Clinical Guideline on ME/CFS was published in October 2021 – a Guideline that we lobbied for and then spent 3 years working on as members of the Guideline committee and as stakeholders – we have endorsed its recommendations and sought their implementation across the NHS and social care services in the UK, Isle of Man, and Channel Islands.
Juan Corlett (from the Isle of Man) was appointed by the ME Association as Community and Integrated Care Engagement Lead in 2022 and explains that “meaningful improvements to health and social care are not easy to achieve. A lot of work is required, and we want to provide practical support to local people to help them demonstrate demand for improvements to existing services and to lobby for new services in areas where no services currently exist.”
Juan has been liaising with representatives of local support groups and the ME Local Network and has supplied practical information to aid Integrated Care Boards refine specialist service specifications. Additional resources will be developed and made available more widely over the coming months.
The initiative aims to help by:
- bringing local support group representatives together to share knowledge and ideas between peers.
- creating resources that highlight good practice for specialist services.
- connecting NHS commissioners and local support group representatives.
- encouraging patient engagement in service evaluation and development.
- assisting media relations and making ME Association representatives available for local press interviews.
- giving coaching, hints and tips to local support group representatives involved in NHS advocacy.
- listening to local people about how we can help and responding accordingly.
We continue to engage with the Department of Health and Social Care (DHSC) to produce a Delivery Plan on ME/CFS. This aims to raise the profile of ME/CFS, support implementation of the Guideline’s recommendations, and advance research investment. The initiative was launched by Sajid Javid, Secretary of State for Health and Social Care, on ME Awareness Day last year. It is hoped the Delivery Plan will be available by summer 2023 following a period of stakeholder consultation.
The ME Association is committed to helping the DHSC, the NHS, and social care services develop improved support for people with ME/CFS (and Long Covid). Good quality healthcare is essential to improving outcomes for people who have medical conditions with no effective treatments.
- We would like to hear from any healthcare commissioners, specialist service leads or clinicians, patient support groups, and local people in the UK and Channel Islands who want to learn more. Please email: localarea@meassociation.org.uk
Background
ME/CFS affects more than 250,000 people in the UK and for decades has been recognised as a life-changing medical condition. Long Covid has been estimated to affect 1,800,000 because Covid-19 created a pandemic that affected a significant proportion of the population. Long Covid has much in common with ME/CFS and healthcare professionals who are involved with Long Covid can learn from the approach to early recognition, diagnosis and management that has been adopted in ME/CFS.
These are indiscriminate medical conditions that effect children and adults and share symptoms that have a similar effect on a person’s functional ability. Recent research is suggesting that up to 50 per cent of people with Long Covid could meet the diagnostic criteria for ME/CFS. Most people who develop ME/CFS do so after an infection, such as glandular fever (Epstein Barr Virus), just as people with Long Covid develop it after COVID-19. We don’t know why some people fail to fully recover from an infection while other people do, we just know that they can succumb to a state of chronic ill-health and disability.
These conditions – which could be described as post-infectious syndromes – affect a person’s ability to function, to perform normal everyday activities, and to mobilise effectively or at all. Symptoms such as post-exertional malaise, debilitating fatigue, unrefreshing sleep and/or sleep disturbances, cognitive dysfunction (‘brain fog’), and many others, can leave individuals confined to their beds and reliant on the care and support of loved ones. They can have a disastrous effect on the lives that people led before their illness and often cause a loss of employment and a reliance on welfare benefits.
The need to establish good health and social care services has been a key issue for many years. There are still barriers preventing many – perhaps the majority of – people from getting an accurate diagnosis and learning how to manage the conditions safely and effectively. A lack of suitable secondary care services can have a detrimental effect on an individual’s health outcomes.
The NICE Clinical Guidelines
While a network of NHS ME/CFS specialist services does exist in England – although it hasn’t received central funding for 20 years – there is no specialist provision in Northern Ireland, Scotland, Wales, or the Channel Islands. However, in 2021, after many years of lobbying, and a great deal of hard work from healthcare professionals, researchers, patients, and other stakeholders (including the ME Association), the National Institure for Health and Care Excellence (NICE) published a much-improved Clinical Guideline on ME/CFS.
The Guideline’s recommendations to the NHS and social care services were well received by the patient community, and the ME Association is now engaging with health and social care providers – and patient support groups – across the UK to help ensure existing services are improved and that new services are commissioned where none currently exist.
Unfortunately, the NICE Covid-19 Rapid Guideline is not as comprehensive or helpful. Health and social care providers have not been given sufficient direction in determining how to support people with Long Covid. The ME Association would like NICE to review its existing recommendations with a view to making them more consistent with the Guideline on ME/CFS.
Patient expectations were high when NHS England recently established a network of Long Covid specialist services, and we want to help them deliver better and more tailored support. We also look forward to hearing about similar developments in the devolved nations because sufferers are currently without suitable healthcare in many regions.
It is vitally important when a new patient is referred to a specialist service that an experienced clinician provides an effective assessment that considers other possible causes for symptoms and disability. The symptoms of ME/CFS and Long Covid can be confused with other medical conditions that might be more effectively treated. The Covid-19 virus can cause damage to certain organs in the body, so triage for a person with suspected Long Covid should consider the cause of breathing difficulties etc. Only after a careful clinical assessment and testing, and the exclusion of other possible causes for symptoms, should a diagnosis of ME/CFS or Long Covid be confirmed.
ME/CFS and Long Covid are energy-limiting medical conditions and patients can benefit from learning how to function within these limitations. Personalised healthcare is key, as individuals can have different needs and a good specialist service will be able to accommodate this requirement. In the absence of effective treatments, use of pacing or energy management is often the safest and most useful approach and is recommended by NICE along with help learning how to mentally cope with a condition that can be very debilitating and often misunderstood.
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