We demand the creation of a new system to report non-pharmaceutical 'treatment' harms.

We demand the creation of a new system to report non-pharmaceutical 'treatment' harms.

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ME Foggy Dog started this petition to Sajid Javid (Secretary of State for Health and Social Care) and

Non-pharmaceutical 'treatments' are prescribed for many diseases by the NHS. However, patients do not have anywhere to centrally report harms to. There is a widespread false assumption that non-pharmaceutical 'treatments' cannot harm patients.

I am a M.E/C.F.S patient and campaigner and both of my social enterprises (ME Foggy Dog and Stripy Lightbulb CIC) tackle Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a social issue, but many different patient groups will benefit from this new reporting system. 

The non-pharmaceutical 'treatments' that have historically (and currently) been recommended to M.E/C.F.S patients are Graded Exercise Therapy and Cognitive Behavioural Therapy. Both are non-pharmaceutical and both have been known to harm some M.E/C.F.S patients. Harm = caused a deterioration of symptoms so bad that the patient has become house or bed bound for years if not decades.

Interestingly, during the recent M.E/C.F.S NICE guideline review it was claimed that there have never been any reports of harm from GET or CBT. Yet, the M.E/C.F.S patient community has been reporting harms to their Dr, NHS trust, CCG, and PALS service for over a decade. The current 'reporting process' for harms from non-pharmaceutical 'treatments' is not fit for purpose if complaints are dealt with 'in house' and are not collated or counted centrally. 

The current situation - the NHS is marking its own homework.

NICE have clearly stated that GET/CBT should no longer be recommended to M.E/C.F.S patients but it is 'only' guidance - many medical professionals are continuing to advise M.E/C.F.S patients to participate in potentially harmful 'treatments' in the form of GET/CBT.

I hope you can clearly see the issue I hope to tackle with this petition. M.E/C.F.S patients have needed this reporting mechanism for many years and I do not doubt that this will be the case with other illnesses too.

This is an urgent matter that needs action from the Department of Health and Social Care and NHS.

Please sign the petition, thank you for your support.

Sally Callow - MEFoggydog.org and stripylightbulb.com

 

0 have signed. Let’s get to 10,000!
At 10,000 signatures, this petition is more likely to get a reaction from the decision maker!