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"Lack of information about the approach of the 'CFS' clinic"

About: Royal Cornwall Hospitals NHS Trust

(as a service user),

I have had Myalgic Encephalomyelitis for the last forty years plus. I need a specialist's letter confirming the diagnosis, a written management / treatment plan, and an OT to arrange a wheelchair assessment.

My GP would like the treatment plan to advise on prescribing LDN, mestinon or other medication to see if it will halt the decline - I can't currently get up for more than about ten minutes a time a few times a day.

The GP referred me to the above clinic. When I rang the clinic to ask if they could confirm that their clinical approach is to regard ME, in line with the WHO and the NHS, as a physical/neurological disease, and not as psychosomatic or an FND - as this information was not on the web page - they couldn't tell me, and didn't even understand the question.

I do not consent to being seen or treated by, (or referred to) doctors or other health care professionals who do not regard ME/CFS as a physical/neurological disease. This is to ensure I have up-to-date doctors who will not harm me by prescribing GET or other discredited 'treatments', it provides me with continuity in my health care, and it means I don't come away feeling 'gaslighted' by doctors telling me my disability is 'all in the mind' when the science (for example at Stanford University among other international centres) has research data showing clearly that it isn't.

I do not want to receive treatment based on a thoroughly discredited piece of research done in the UK called 'Pace', which was so badly done, it is used as a teaching example of how not to do research. Because of the lack of information on the web page of the 'CFS' clinic, and the lack of awareness of the issue by the person who answered the phone I have had to decline the referral as I simply have no assurance of the approach they are using or that they will respect the boundaries of my consent and be able to find anyone suitable to see me.

When I explained the boundaries of my consent to the admin, the response was there is nowhere in the system to record this so the information cannot even be passed on ahead of the appointment.

I have spoken with my solicitor and as there seems to be no way to get the information ahead of the appointment or for my consent to be recorded, I have decided to refuse to be seen there.


Response from Jess Saunders, Patient Experience Coordinator, Patient + Family Experience Team, Royal Cornwall Hospitals NHS Trust 2 weeks ago
We are preparing to make a change
Jess Saunders
Patient Experience Coordinator, Patient + Family Experience Team,
Royal Cornwall Hospitals NHS Trust
Submitted on 01/04/2021 at 15:23
Published on Care Opinion at 15:50

picture of Jess Saunders

Dear Whoever,

Thank you for taking the time to share your story with us. I was saddened to read about your experience of the CFS service here at the Trust. I have already spoken to the department who are keen to discuss this further with you. If you would be happy to do so, please contact the Patient and Family Experience Team (Complaints) who will pass your details on. I will make them aware of your feedback so you will not have to explain everything again, you just need to refer to this story.

I would like to thank you for highlighting the issues with our web page which doesn’t contain the information you would have liked, the service are now aware of this and will be reviewing the web page to make updates following your feedback, they will also be providing additional training to the admin team.

If you would like to make a complaint so your experience is formally investigated further, please do not hesitate to contact the Patient and Family Experience Team using the details below, again, quoting this Care Opinion feedback.

01872 252793

Thank you again for taking the time to share your story with us.

Best wishes,


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