Sorry I haven’t posted an update for a while but other than emailing Steve Barclay MP, Secretary of State for Health and Social Care, and sharing information about the petition left, right, and centre, I haven’t had anything to report.
I wrote to the Care Quality Commission (ENGLAND) on the 15th November 2021 about ME Foggy Dog’s Shake It UP campaign and received a generic ‘we’ll get back in touch with you’ email a month later. I realised I hadn’t received a further reply in September this year (brain fog = I forgot!) and so chased them up.
This is their response (received 22nd November 2022)
Dear Ms Callow,
Firstly, please accept my sincere apologies for the long delay in responding to your query. I understand from initial enquiries that this was due to an administrative error, but please rest assured that we are continuing to try to understand how this happened in order to prevent it from reoccurring in future.
As the independent regulator for health and social care, CQC’s purpose is to make sure health and social care services provide people with safe, effective, compassionate, high-quality care and we encourage these services to improve. We do this by fulfilling our role to register, monitor, inspect and rate providers delivering one or more of the regulated activities as set out in the Health and Social Care Act 2008.
In regulating providers delivering services for people with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and/or Long Covid, CQC would seek assurance that the service is following all relevant guidelines. Whilst we do not set standards or publish guidance ourselves, we do check that providers are meeting required standards and guidance. This includes NICE guidelines.
Where guidelines are not being adhered to, providers would be required to clearly explain the reasoning behind this and demonstrate that this decision does not affect the safety of the service. Where providers are not able to assure us that a service is safe and/or the risk of harm has been minimised, we may seek to take enforcement action against them.
Unfortunately, it is not within CQC’s remit to monitor specific treatments. However, we would encourage everyone who wants to share their experiences of health or social care in England with us to do so via our Give Feedback on Care mechanism.
With best wishes,
CQC Enquiries Team
I know this is an extra thing for people living with M.E to think about but it is important.
If YOU, or someone you know, have been recommended ‘increasing exertion/activity’ under any name (Graded Exercise Therapy or other) or been told to take part in Cognitive Behavioural Therapy as a ‘treatment’ – please contact the CQC via the link in their email above. The CQC need to know that clinics and healthcare professionals are not adhering to the NICE guideline, as you read for yourself, the CQC can take action.
This is in addition to emailing me (Sally via email@example.com) with details of who has recommended this to you so I can include it in my correspondence with Steve Barclay MP and Amanda Pritchard to PROVE that NICE guidelines are not being adhered to and patients are still being harmed.
I know this latest development doesn’t get us any closer to having a reporting system for non pharmaceutical ‘treatments’ but it is one more place to complain and subsequently create data.
I’m having to tackle this issue in multiple ways as I keep hitting brick walls.
But – SHAKE IT UP continues!
and Foggy (Obviously)
ps. Please sign the international Shake It Up petition (8697 signatures so far) and take part in the wider campaign if you have not done so already. Thank you.