Can you tell NICE what you think of a draft decision aid for chronic primary pain?

[NICEGetInvolved]

The National Institute for Health and Care Excellence (NICE) produces guidance for the NHS and other public services on the most effective ways to promote good health, prevent and treat disease and ill health, and provide social care support. Their guidance is based on research evidence and takes into account the views of people working in or using relevant services, and other stakeholder groups.

NICE are currently developing a patient decision aid for chronic primary pain. A patient decision aid helps people take part in decision making about their care. They provide information on the options, but they do not recommend one option over another. Instead, they help people think about what matters most to them so that they can make the decision that is most right for them at that particular point in time.

We’re looking for people with lived experience of making a choice around which treatment for chronic primary pain is best for them to review this draft patient decision aid and give us some feedback on how useful it is from a the perspective of someone accessing an NHS service. We’re also inviting feedback from the friends or relatives of these people. Please note that the decision aid should not be used by someone to make an actual decision about their treatment – at this stage (i.e. before it is finalised and published) we are only seeking your comments as to whether this is something that would work from a patient or unpaid carer’s perspective.

We are only looking for feedback this time from people with experience of chronic primary pain. The NICE guideline on chronic pain describes chronic primary pain as pain where no underlying condition causes the pain, or the pain (or its impact) appears to be out of proportion to any observable injury or disease. It is different to chronic secondary pain, which the NICE guideline describes as pain that can also be secondary to (caused by) an underlying condition (for example, osteoarthritis, rheumatoid arthritis, ulcerative colitis, endometriosis).

The survey should take no more than 20 minutes to complete. NICE unfortunately cannot offer payment for this involvement opportunity, but would be very grateful if you are able to share your feedback to help us develop this decision aid – it is the opportunity to make a difference for people like you, who use NHS services.

NICE would send out the draft patient decision aid together with a link to a survey to complete on Tuesday 12 September 2023. There would then be a period of 3 weeks to respond – the deadline to submit your response to this survey is by the end of Tuesday 3 October 2023.

If you are interested, please let NICE know by completing this form: online1.snapsurveys.com/us581z. You can sign up to take part now, but you can also change your mind about doing this if you need to.

If you have any questions about this involvement opportunity, please contact Jess Bailey – either by calling 0161 219 3889 or emailing [e-mail].

[Scotsman53]

Link seems wrong, page title is "Reviewing NICE's patient decision aid about abdominal aortic aneurism (AAA)"

[NICEGetInvolved in reply to Scotsman53]

My sincere apologies - I'm doing too many decision aids at once! I've updated with the correct link now. Thanks for letting me know - Jess