The ME Association writes to the Chief Executive of Shropshire, Telford and Wrekin NHS Trust about services for people with ME/CFS in Shropshire and the implementation of the new NICE guideline on ME/CFS.
To: Simon Whitehouse
Chief Executive – Shropshire, Telford and Wrekin NHS Trust
Dear Simon Whitehouse
Re: Implementation of recommendations in the NICE guideline on ME/CFS by the Shropshire, Telford and Wrekin NHS Trust
We have been contacted by a member of the ME Association in Shropshire who is very unhappy with the service that is being provided for people with ME/CFS.
There are reports of people being sent material in the post in place of treatment and being left to rely on peer-led support rather than the clinical pathway recommended in the new (October 2021) NICE guideline on ME/CFS.
My understanding of the current ME/CFS referral service in Shropshire is that:
- There is still no specialist multidisciplinary team or service for people with ME/CFS in Shropshire.
It would seem that the service that used to operate was suspended during the pandemic, and this has not resumed due to the service now being managed ‘in a different way’. - GPs can refer a person with suspected ME/CFS to a local hospital.
However, I have been unable to find any information about this diagnostic referral service for either GPs, or people with ME/CFS, on your hospital website.
It also appears that people with ME/CFS will not be receiving the type of multidisciplinary management, care and support that is recommended in the new guideline – as outlined below. - People with a diagnosis of ME/CFS can be referred to a community neurological rehabilitation team for help with management. However, the website for this service states that it is not able to offer any person-to-person consultations and their input is restricted to the supply of a handful of leaflets and a DVD.
We are unfortunately unable to accept referrals for Chronic Fatigue Syndrome at this time.
Individuals who are referred to us with this condition will still be provided with self-management information though.
Overall, this is clearly a very unsatisfactory situation for people with ME/CFS, or suspected ME/CFS, in Shropshire.
The new NICE guideline on ME/CFS was published in October 2021
The guideline makes a number of important recommendations regarding the diagnosis and management of people with ME/CFS in primary care, secondary care and social care.
In relation to health service commissioning, this means making sure that all the components in the new clinical pathway for people with ME/CFS are being met and co-ordinated in secondary care.
Key recommendations in the new guideline relating to primary care and the hand over to secondary care include:
1. The early recognition of people who have ME/CFS symptoms (which often follow an acute infection) in primary care.
2. Providing appropriate management advice whilst a diagnosis of ME/CFS is being suspected and made.
3. Aiming to confirm a diagnosis of ME/CFS in primary care no later than three months from the onset of symptoms in both adults and children.
4. At this point referring the person on to a specialist centre that has a multidisciplinary team who can confirm the diagnosis (as there is a high rate of misdiagnosis of ME/CFS in primary care), providing expert help on all aspects of management, and preparing
an individual care an support plan.
The NICE guideline (1.4 Diagnosis – Box 3,) provides specific guidance on the composition of the multidisciplinary specialist team:
Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dieticians, and clinical or counselling psychologists.
Children and young people are likely to be cared for under local or regional paediatric teams that have experience of working with children and young people with ME/CFS in collaboration with ME/CFS specialist centres.
5. The specialist team should also provide (where needed) domiciliary management and support for people who are housebound with severe or very severe ME/CFS.
6. There should be a separate service for children and young people with ME/CFS.
7. Specialist services should provide information and guidance on relapses, education, employment and nutrition.
8. Following referral to a specialist team, future management and follow up may continue in secondary care, primary care, or in a mixture of both.
9. All health professionals who are involved in the management of people with ME/CFS should have the necessary clinical skills and education/training and be aware of the recommendations in the new NICE guideline.
The ME Association is closely following how the new guideline is being implemented (or not implemented) by both health service commissioners and existing service providers around the UK.
We are also assisting service providers and other organisations to produce accurate and up to date information on the new guideline that is also patient friendly.
One example is the information that has just been produced by the NHS Recovery College with our assistance:
ME/CFS – Recovery College Online
I would therefore be grateful if you could explain why you are unable to offer a specialist referral service that follows the recommendations in the new NICE guideline on ME/CFS and what steps are being taken to ensure that you can now do so.
As this matter is of great interest to people with ME/CFS in Shropshire, this letter has been published on the MEA website.
We would also like to publish your full response.
Yours sincerely
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Copy:
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Helen Morgan MP
Dr Peter Barry – Chair, NICE guideline committee on ME/CFS
Baroness Ilora Finlay – NICE guideline committee on ME/CFS