Summary of chances to tell UK health decision-makers what we need for M.E.

I’ve blogged about three ways we can have our say about M.E. treatment in the UK, so I thought I’d make a summary.

They’re all ways of submitting our opinions online. Click the name of the engagement opportunity to go to my article explaining more about it.

Opportunity What is it? Deadline
Accelerated Access Review Patients are invited to engage in government
review to speed up use of new treatments and tests.
4th Sept
NHS Gather Online forum on how the NHS can improve.
The issues raised by public will be discussed by
NHS England leaders.
11th Sept
Help shape research in the NHS The UK National Institute for Health Research
is asking what tests and treatments need to be
researched for the NHS.

I’ve come across a view submitted about a NICE guideline which has been highlighted as a good one. It was to a different engagement opportunity but perhaps it will help to see an example of how to write a constructive one which gets attention: A radiographer’s view on the new NICE cancer guidelines.

Perhaps we could get together with our friends with M.E. to submit our views or bounce some ideas off each other in the comments section below. Here are some guidelines for safe discussions.

2 thoughts on “Summary of chances to tell UK health decision-makers what we need for M.E.

  1. Going to check out your links Emily – thank you… In the meantime here are my “10 Things”

    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:

    Liked by 1 person

  2. That’s excellent, Sally – a great way to get the discussion going. Hopefully even if we can’t manage to all do a submission we could work together, pooling our energy, to get something put together to send in. You’re right we need to take the opportunities – it’s not often we get asked! Thanks again, Sally x

    Liked by 1 person

Please leave a comment:

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s