United Kingdom: Petition Change.org: for a new mechanism by which M.E/C.F.S patients can report harms.

Conceivably possible if the petition reaches all the other patient groups affected, including the mental health ones? There must be millions of people being given psychological or behavioural interventions in the UK and a proportion of them must find them useless or worse in other illnesses, too.

Plus, by keeping it general, even unaffected people are likely to see the sense and fairness in everyone having the same opportunity to report harm no matter whether it's from drugs, surgery or psychological or behavioural treatments.

 

One of the things that keeps me going is the thought that what we do won't just affect us but will improve health and social care for everyone. One day they might use the history of ME to highlight how readily establishment systems that are supposed to help can be subverted, whether by accident or design, to inflict harm and stigmatize.

This is an area that I think the ME community could and should work together with others facing the same problem. Pushed into ineffective or potentially harmful treatment for which there is low evidence - yet that low evidence is sufficient to push the patient into it. When harm occurs then the patient is denied any safe means of reporting harms because of the lack of evidence that treatment causes harms.

This Catch 22 healthcare loophole needs to be highlighted and stopped for everyone.

I have signed this petition but I would also sign and share your petition @Lucibee.

 

Yes and in this instance probably better started by an individual rather than any organisation affiliated to a particular group.

 

OK. I'm off to jump through a few hoops.
brb... (in about a week)

 

The author of this petition has posted an update

 

The author of this petition has post a link to a new podcast:

See https://www.change.org/p/department...=email&utm_source=petition_update&utm_term=cs

 

https://twitter.com/user/status/1463608360004034564

 

1,873 signatures, https://www.change.org/p/department...-to-report-non-pharmaceutical-treatment-harms

 

So I think if you want to have impact with this, you need to match it with publicity.

#MEAction UK typically arrange a photo shoot when they hand over their petition to the recipient (e.g., NICE).

That works well to show how important an issue is and gets local press (sometimes national) involved.

That can be the make or break when it comes to Parliament.

 

Here is an example of another Change petition that has combined both petition types in one campaign:

https://www.change.org/p/national-i...cruel-changes-to-chronic-pain-nice-guidelines

hint hint

 

https://twitter.com/user/status/1466135008700080129

 

Email update this morning - a long way to go - my bolding of what will likely be an ongoing issue.
Care plan seen anywhere yet?


Response From The Department of Health and Social Care
ME Foggy Dog
United Kingdom
16 DEC 2021 —

Thanks to Vicky Foxcroft MP, Shadow Minister for Disabled People , I received an email response from the Department of Health and Social Care yesterday afternoon. It's a variation of the other responses received from them and NHS CEO Amanda Pritchard. It's a generic reply that shows we have a long way to go (I have known from the outset that this would be a long hard slog).

In the case of M.E/C.F.S, patients have been complaining to the NHS, GP practices, CCGs, PALS etc for over a decade yet during the NICE guideline review process it was stated that the 'treatments' did not harm patients as there were no reports of harms. This PROVES that the existing 'system' for patients to complain/report harms is ineffective, not fit for purpose, and doesn't serve the best interests of patients.

See the email below - (Please note, I have yet to receive a reply from Sajid Javid MP in response to the email I sent him on 25th October 2021)

Dear Ms ????

Thank you for your correspondence of 17 November, which was written to Sajid Javid by Vicky Foxcroft, Shadow Minister for Disabled People, about your petition concerning NICE Guidelines on myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). I have been asked to reply.

I would like to thank you for taking the time to raise your concerns about this issue.

As you will be aware, on 29 October, NICE published its updated guideline on the diagnosis and management of ME/CFS. The guideline recommends that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy, should not be offered for the treatment of ME/CFS. It also recommends that any physical activity or exercise programme should only be offered if it is delivered or overseen by a physiotherapist who is a member of a ME/CFS specialist team, and if it is regularly reviewed. More information on the recommendations is also available through NICE’s website.

There are no plans to put in place a new reporting system to enable ME/CFS patients to report harms resulting from graded exercise therapy. The National Institute for Health and Care Excellence’s updated guideline does not recommend the use of graded exercise therapy in the management of ME/CFS and clinicians are expected to take this recommendation fully into account in the care and treatment of individual patients.

All patients have the right to make a complaint about any aspect of NHS care, treatment or service, and this is firmly written into the NHS Constitution. Most hospitals have a Patient Advice and Liaison Service (PALS) which can be contacted if there is a problem with the treatment or care received while in hospital. Further details about the complaints process can be found on the following link: https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/

Thank you for taking the time to write, and I hope this reply is helpful.

Yours sincerely,

Name
Ministerial Correspondence and Public Enquiries
Department of Health and Social Care

 

These efforts really need to make clear that this is a much broader issue than ME/CFS care.

 

From the above link - my bolding :

I was convinced that I had the right to ask for a second opinion, so it's useful - but disturbing - to know that I don't have such a right.