United Kingdom: Petition: Set up a national harms reporting scheme for non-pharmacological treatments

Lucibee said:
Seems someone got in there first... :wink: https://petition.parliament.uk/petitions/601237
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Do sign and share? Petitions only get going if enough individuals and groups share them.

Note UK parliamentary petitions can only be signed by people resident (both UK citizens and non citizens) in the UK or by UK citizens resident overseas.

[corrected wrong word]
 
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Signed. I'm not on 'social media' but have sent it to five sympathetic friends by email, explaining briefly why it matters.

I'm not good at keeping up with things. Have we had any insights from the highly successful German patients who achieved high numbers with their recent petition? @Joh ?
 
I'm slightly concerned that this is already being seen as a competition. I really don't think it is. Both petitions are valuable and have their strengths and weaknesses.

The UK government petition is very general - applies to any condition and any type of therapy. The Change petition is more specific to ME and Long Covid.

The former requires the Government to respond if there is enough interest, whereas they are under no obligation to respond to any other petition, even if they achieve millions of signatures.

However, the gov petition is very limited in description - there is very little space allowed to describe what is wanted. Petitions on other sites allow a huge amount of space to adequately describe the issue, and may be much better for awareness raising for this reason.

It is also time limited, which other petitions are not.

My feeling is that they are complementary, and could work really well together if both petitioners could be encouraged to do so?
 
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It's unfortunate that the petition uses the term 'should' rather than 'must', as this has a particular meaning in government statutory guidelines. See for example the autism statutory guidelines and legalise:
1. Where the guidance says local authorities, NHS bodies and Foundation Trusts “must” it refers to legal duties imposed upon these bodies by the Autism Act 2009 or other Acts of Parliament e.g. the Care Act 2014, and the Children and Families Act 2014 (or secondary legislation made under such Acts).

2. Where the guidance says local authorities/NHS bodies/Foundation Trusts “should” it refers to statements of policy or information with regard to the way in which Local Authorities (and in particular their Social Services Directors), NHS bodies and Foundation Trusts should exercise their functions with a view to securing the implementation of the autism strategy.
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https://assets.publishing.service.g...tachment_data/file/422338/autism-guidance.pdf
 
Lucibee said:
I don't think that matters. A petition isn't a legal document. Ultimately they either will or they won't. The wording at this stage will have no effect on that.
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I understand it's not a legal document, but it is about expressing the gravity of need for action. I think as the wording stands a lot of people won't grasp that. A petition also needs to include examples of 'non-pharmacological treatment' that a wide range of members of the public can immediately relate to if it is to gain public momentum.
 
Florence said:
I'm not good at keeping up with things. Have we had any insights from the highly successful German patients who achieved high numbers with their recent petition? @Joh ?
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This is what I know about the Geman petition:

- The petitioners have created a website in German and English for the petition - with information, detailed instructions and materials (the instructions were also translated into more languages by supporters)
- Materials like lists, handouts and a flyer could be downloaded and printed
- The petitioners have created videos (in German and English) and pictures for everyone to use on social media, websites etc.
- They created a hashtag
- They closely managed the campaign every day on social media (e.g. thanked everyone who shared it and kept everyone updated)
- The petitioners and also pwME and supporters informed groups, politicians, the press and "influencers" with large accounts about the petition and asked to share it
- Signatures were collected on the streets
 
A side issue that indicates a pressing need for recording harms from behavioural and psychological interventions, is the relatively recent BACME members survey that could be interpreted as indicating a widespread introduction or ‘pacing’ and ‘pacing up’ as therapeutic techniques by British specialist ME/CFS services (see recent posts on thread discussing news from BACME https://www.s4me.info/threads/unite...ssociation-for-cfs-me.7900/page-9#post-393029 ).

If we are seeing a national trend to go beyond the new ME/CFS NICE guidelines, by changing ‘pacing’ into ‘pacing up’ without any evaluated evidence base, then monitoring of harms becomes even more essential.
 
Judging be some.of the statements made after the new NICE guidelines were produced I think it's safe to say that some clinics were already playing a bit fast and loose with the old guidelines.

There were no evidence of harms yet somehow they decided to evolve GET into something a different. No firm definition of what that something different is. Despite claiming expertise the clinics themselves acknowledge treatments only help "some" and can't tell who willbe helped or harmed.

So, if the clinics who offer non pharmacological treatment (& redefine those treatments at will regardless of the guidelines), then there must be some mechanism for patients to do it themselves.

Given the vulnerability of some patients, be they children under threat of being taken into care or adults who need support to access benefits, this mechanism has to be anonymous to be honest.
 
Joh said:
This is what I know about the Geman petition:

- The petitioners have created a website in German and English for the petition - with information, detailed instructions and materials (the instructions were also translated into more languages by supporters)
- Materials like lists, handouts and a flyer could be downloaded and printed
- The petitioners have created videos (in German and English) and pictures for everyone to use on social media, websites etc.
- They created a hashtag
- They closely managed the campaign every day on social media (e.g. thanked everyone who shared it and kept everyone updated)
- The petitioners and also pwME and supporters informed groups, politicians, the press and "influencers" with large accounts about the petition and asked to share it
- Signatures were collected on the streets
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That is very helpful @Joh . Thank you. That sounds like a highly effective, co-ordinated strategy. Hopefully we can learn from it.

Do you know if there was a particular patient group/charity that took the lead on this?
 
Can I just say again that this isn't a competition? Anyone can take any live petition and run with it - no matter who started it.

We (the petitioner and I) felt that it was important to get it out there and accepted as soon as possible, particularly as Sally's campaign is gaining momentum - I hoped that she would understand this, and would see it as supportive - I want hers to succeed! - we need as much coverage as possible on this issue. That's why it is deliberately very general - with no mention of any specific therapies or conditions. Also, the petition form itself is *extremely* restrictive in the number of words it allows to describe the petition (80 letters [*letters* not words!] for the title, then 200 letters for the description).

We felt that we needed to act as soon as we saw Edward Argar's response. If the petition had been worded to only mention ME, it is likely it would have been ultimately rejected because of his response. It was therefore crucial to make it general, and to get in there before a similar (but specific) petition appeared from someone else (because they automatically reject any duplicate petitions).

We need to let the Government know that more than just a few people feel that such a scheme is necessary, and that it's not just the desire of a small group of "activist" patients.

So I asked Sally why she hadn't also launched a government petition in parallel with her more global campaign. She said it was because the Government ignores petitions even if they reach 100,000 votes. That's true, some popular petitions do fail, but they also make it very clear on the petitions site that they *will not* consider petitions on other sites:
Petitions started on other websites
The Committee will only consider, and the Government is only obliged to respond to, petitions which people have started on the UK Government and Parliament petitions website. The Committee will not consider petitions hosted on external websites.
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If you are directly asking the Government to do something - it is made very clear that this is the route you need to go down. They are obliged to respond.

But it's not exclusive. It does not mean that you can't raise awareness using other means. In fact, I would say that that awareness raising by other means is more important. That's why I have been dismayed and upset at Sally's threats to remove her petition.

We did this because we want to help.
 
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Apols for any confusion in the placement of my posts in this thread. I wasn't responding to the posts that directly preceded them (about the German petition), but to earlier issues and things that were mentioned in response to Tom's twitter post.

Sorry if that wasn't clear.
 
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