The NHS Constitution for England, hold that six values that should underpin everything done by NHS staff – working together for patients, respect and dignity, commitment to quality of care, compassion, improving lives and everyone counts. For some of those affected by ME/CFS these values have not been adhered to. ‘My full reality: the interim delivery plan on ME/CFS’ reflects these concerns as ‘problem statements’ within in the Attitudes and Education Professionals section –
- Many children and adults with ME/CFS feel that they have not been believed, supported or treated equally across all settings and professional groups.
- There is limited objective evidence for what current attitudes are towards ME/CFS among most health, social care and other professionals.
- Many people with personal experience do not feel that professionals always fully acknowledge or understand the impact of ME/CFS on their daily life.
- There remain concerns about how best to manage and approach ME/CFS in some services, despite the updated NICE guideline on ME/CFS (NG206).
- There is limited appropriate undergraduate and postgraduate healthcare professional training on ME/CFS.
The draft Delivery Plan also narrates how it will be assessed whether actions have delivered – namely
- people with ME/CFS feel that they are believed, understood and treated with respect, without feeling blamed for being ill, staying ill or experiencing deteriorating symptoms
- people with ME/CFS feel accepted, safe and supported by services available to them and are confident to approach professionals for advice and support
- people with ME/CFS feel that they are experiencing the same standard of care as people with other long-term health conditions
- family, other unpaid carers and supporters of someone with ME/CFS are listened to and involved in decisions, where the person with ME/CFS is happy for them to be involved – these friends and supporters are seen as being experts with experience, whose views are respected, and they are able to advocate for the person with ME/CFS, with the permission of that person
The attitudes within, and availability of NICE-complaint services offered by, the NHS are key to achieving these objectives. In fact, NICE outlined the steps needed to put ME/CFS guideline into practice on 12th May 2022 and these included investment to increase the number of specialist centres and specialists to diagnose and develop care and support services. As Paul Chrisp, Director of the Centre for Guidelines at NICE stated
Our guideline on ME/CFS provides clear support for people living with ME/CFS, their families and carers, and for clinicians. It uses the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition.
With no nationally commissioned service for ME/CFS in either primary or secondary care, it will be for local systems to determine how to structure their services to achieve the aims of the guideline. Today’s implementation statement will build upon the widespread support from system partners and the ME/CFS community for the guideline and enable them to work together to make sure its important recommendations are implemented.
Due to the dogged determination of the ME Association the failings of NHS Boards in England to provide NICE 2021 compliant services are well known. In Scotland (into which NICE’s writ does not run), the Scottish Government reported that only two NHS Boards have a specific specialist ME/CFS pathway for patients in their area and, at the time of this survey, only one of these pathways was active.
Against this background two parliamentary written questions were asked by Jo Platt MP (Chair of APPG on ME) (UIN 34646) and John McDonnell MP (member of APPG on ME) (UIN 31752) centering on ME/CFS and the NHS with both being responded to by Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care).
Ms Platt wished an update on a September 2024 NHS England commissioned stocktake which looked to provide an in-depth overview of the position of post-COVID-19 services across England. The scope of this commission was extended to include ME/CFS services and the outcome due by end January 2025. The Minister announced that the stocktake had indeed been completed but
NHS England’s long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome, stocktake aimed to collate information about service commissioning, activity, and delivery, to provide a national overview of the services commissioned by integrated care boards as part of their core activity. The stocktake was completed for an internal NHS England committee and, therefore, there are no plans to publish the findings. However, those findings did confirm the widely recognised challenges of significant variation in care delivery across England, and a lack of comprehensive activity data.
To Mr McDonnell’s earlier question on whether the finalised Delivery Plan would include a) an apology to patients for their historic treatment and (b) clear steps that demonstrate his commitment to delivering a new approach the Minister did not answer directly but acknowledged variations in service provision nationally.
People with ME/CFS deserve the most appropriate treatment and to be confident that the National Health Service can offer that treatment. I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services, and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS.
