Late MS diagnosis leads to apology and compensation

Public Services Ombudsman ruling in Wales could be relevant to people with ME/CFS

Wales online has a story about how the Betsi Cadwaladr Health Board has been ordered to apologise and pay compensation after the Public Services Ombudsman for Wales said the man, known as Mr A, suffered ‘ unnecessary anxiety and uncertainty' after a long delay in being diagnosed with MS.

Although this case of late diagnosis relates to multiple sclerosis, and the adverse consequences for the person involved, the ruling by the Public Services Ombudsman for Wales (along with compensation running into ’thousands of pounds') could have important implications for people with ME/CFS. 

This is because the new NICE guideline on ME/CFS (which is also effective in Wales) makes a very clear recommendation that once a diagnosis of ME/CFS has been made (or suspected) by a GP, and symptoms have persisted for three months, then the person should be directly referred to a specialist team/service who can confirm the diagnosis (as there is a high rate of misdiagnosis in primary care) and prepare a mutually agreed care and personalised care and management plan
If a local health authority fails to provide such a specialist referral service for either diagnosis or management, and a person with ME/CFS then suffers harm as a result, the same principle should apply as to someone with MS in the same position

NICE guideline on ME/CFS:

1.4 Diagnosis

1.4.1 Diagnose ME/CFS in a child, young person or adult who has the symptoms in recommendation 1.2.2 that have persisted for 3 months and are not explained by another condition.

1.4.2 Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms at 3 months and whether further investigations are needed.

1.4.3 Refer adults directly to an ME/CFS specialist team (see box 3) to confirm their diagnosis and develop a care and support plan.

1.4.4 Refer children and young people who have been diagnosed with ME/CFS after assessment by a paediatrician (based on the criteria in recommendation 1.2.2) directly to a paediatric ME/CFS specialist team (see box 3) to confirm their diagnosis and develop a care and support plan.

Dr Charles Shepherd comments

Having spent a huge amount of time over nearly four years on the guideline committee that prepared the new (October 2021) NICE guideline on ME/CFS, thsse are not just words that can now be ignored

Health service commissioners have a duty to provide clinical services that follow what we have recommended – especially in relation to the specialist teams and services that they should now be offering in relation to both diagnosis and management of ME/CFS

We have also been spending a lot of time on initiatives that are aimed at implementation of the new guideline at local level

And this now includes the appointment of a new member of staff at the MEA to help with this work

But we cannot do this alone

People with ME/CFS, along with local ME/CFS groups, also need to be asking their local CCG or Iintegrated Care Board what they are doing to make sure that there is a local ME/CFS referral service that is doing what the new NICE guideline is recommending

If not – why not?

And contacting the media, local MP etc if further pressure is required


This is our summary of all the key recommendations relating to Diagnosis, Management, Children with ME/CFS and Severe ME/CFS that are in the new NICE guideline on ME/CFS

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Dr Charles Shepherd
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