Two big opportunities for people with M.E. to engage with policymakers

There are now 2 opportunities for the UK general public to have our say about treatment in the NHS: the Accelerated Access Review and NHS Citizen Gather. These aren’t exclusive to M.E. but I think they’re opportunities we should take.

Accelerated Access Review – UK (closes 4th Sept)

This is the government review on how to get newly researched treatments and tests to patients more quickly. This might have an impact on getting future M.E. drug treatments implemented and diagnostic tests for M.E. at our GP surgeries, considering the rituximab trial and all the research into potential biomarkers.

I’ve written more about this in Patients invited to engage in government review to speed up the use of new treatments and tests, including what you need to do to have your say. There’s also a page written by the patient champion for the review to give you some ideas.

NHS Citizen Gather – England (closes 11th Sept)

A close up from an NHS Citizen graphic showing the Gather process
A close up from an NHS Citizen graphic showing the Gather process. Source

NHS Citizen is a way for the public to play a more active role in NHS England’s decision-making. We can use NHS Citizen Gather online discussion forum to talk to others about how the NHS can improve. A Citizens’ Jury will choose five issues from the forum to be discussed by NHS England leaders and citizens at the NHS Citizen Assembly in November. I’ve joined and you can sign up here and join in with the discussions.

A good video has been added on the NHS Gather site on how to use the forum, here.

The main topics in the online discussion forum are very relevant to the complaints I see from people with M.E. on social media. These are:

  • treatment and services
  • local hospitals
  • funding and commissioning
  • relationships and transparency
  • national management
  • young people
  • community health

From the news release:

“Everyone who joins in with the NHS Citizen Gather can:

  • Start discussions on how the NHS can improve by posting ideas, suggestions and evidence
  • Join discussions and comment on what other people are saying
  • Contribute evidence and insights to develop the discussion
  • Vote to support the discussions you think are important”

There’s also some information about planning an offline Gather event, in addition to the online discussion forum mentioned above.

Discussion

I understand the cynicism about these sort of public engagement events; that they’re just lip service. I don’t want to dismiss that or how we’ve come to think that but I want to use my 27 years of wrong treatment by the NHS and some health professionals positively, to make sure this doesn’t happen to people with M.E. any more.

Sometimes I think we’ve been so damaged and hurt by the whole way we’ve been treated that we’re unable to think big for our campaigns. Don’t be put off thinking even bigger and imagine a world without M.E.! This is Action for M.E.’s vision, which I share too and each little thing we all do in our campaigning is another step nearer to that. Perhaps if some of us feel unable to do this we could join with the charities for these engagement events as a way of really making our voices heard.

The deadlines for both are in September, so we have plenty of time to have a think about what we’d like to contribute, in terms of our ideas for improvement on the way things currently are for people with M.E. in the UK.

There’s also an ongoing way of the public recommending what research needs to be funded in the UK, which I’ve written about in the article Help shape research in the NHS!

Let me know what you think in the comments below after reading about safe discussions and we can start thinking about what we’d like to contribute to these engagement opportunities! Sally has left her wish list below. Are there any you’d like to add?

Update (21/09/15)

The cut-off date for issues which will be taken forward and discussed by the Citizens’ Jury at the November assembly has now passed. NHS Gather is still open, and any issues raised from this point onwards will be considered for next year’s Assembly. To find out more about what happens next, including how to vote for the issues of interest to you, visit Gather Update: Review of Issues and Next Steps.

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4 thoughts on “Two big opportunities for people with M.E. to engage with policymakers

  1. Sally has left her wish list:

    So what do we the ME patients need right now? This is my wish list:

    1. Regional specialist clinics: These should be led by consultant physicians who are 100% behind the biomedical approach to ME as a physical illness (and who reject the biopsychosocial approach that promotes graded exercise and cognitive behaviour therapies).

    2.Early patient referral to one of these specialist clinics: This should happen as soon as the problem is evident, so that a full array of tests can be carried out, and the seriousness of the condition fully assessed. Waiting list times must also be kept short.

    3. Pacing and resting advice should be given at the earliest opportunity, and definitely prior to official diagnosis. The precautionary approach is important.

    4.Ongoing support should be offered on the practicalities of how to implement the dramatic change of lifestyle required.

    5. Medical professionals should recognise that a “cure” is not yet available, but be happy to work with the patient to control symptoms, and to slow illness progression.

    6. Medical professionals need to formally recognise the severity of the illness, and so give patients the support they need to access benefits, and to communicate with employers.

    7.Practical home support should be readily available for those who become more severe, with recognition that travelling to the doctor may not be possible.

    8. Hospitals need to be made aware of the needs of the most severe patients so that going to hospital, is not in reality more harmful than staying at home untreated!

    9. A re-education programme for front line Health Professionals needs to be established to rid existing professionals of the notion that exercise is beneficial, and that patients simply aren’t trying to get better!

    10. And finally FUNDING – Patients need to see that governments are taking this illness seriously enough to research it with a per patient expenditure commensurate with other debilitating illness.

    Taken from my blog post here: http://sallyjustme.blogspot.co.uk/2015/03/10-things-me-patients-need-now.html

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