NICE guideline on chronic pain - patient and carer committee members needed

[NICEGetInvolved]

Hi Everyone,

Just to let you know that the National Institute for Health and Care Excellence (NICE) is developing guidance on the assessment and management of chronic pain (also referred to as persistent or long-term pain).

We're looking for patients and carers to join the committee to ensure the guidance is reflective of the experience and needs of patients.

The recruitment advert is here: nice.org.uk/get-involved/jo...

This explains more about the role, the commitment required and what we can offer to help you take part, including expenses, an attendance fee, training, and support.

The recruitment will close next week - the deadline for applications is Wednesday 22 November. If there are any questions, please do get in touch by emailing [e-mail] or calling 0161 870 3020.

Thank you for reading!

Jess Fielding, NICE's public involvement team

[Joanne1972]

Oh I do like that people with chronic pain can be included in the nice guidelines research. I would of loved to of taken part but can't because of chronic pain! I couldn't comit to getting to London on a specific day, unfortunately I've woken up and couldn't even manage walking to the dustbin this morning. I think I would also find it difficult to concentrate on the reading required due to the fatigue n drowsiness associated with living with chronic pain and the medication for it.

My only concern is that people who are in to much chronic pain to attend won't be heard because we can't commit to the travel. Someone who is in chronic pain but is able to attend may not have the same difficulties those of us with more severe pain have.

If at a later date you thought of doing a questionnaire for people unable to commit to the travel required I'd happily take part.

It's really important information you are gathering and the nice guidelines will effect a lot of our futures.....and hope for the future as it would be great if we had nice guidelines that really understood the difficulties living with years of chronic pain and the many frustrations we face.

Oh I do wish I could attend....so much to say

Anyway, I wish you well with your information gathering and I'm keeping my fingers crossed for the findings and our future

Jo

[NICEGetInvolved in reply to Joanne1972]

Thanks, Jo. I totally agree that committee meetings aren't the ideal, especially for people in lots of pain. I'm really sorry about that.

It is something that we're trying to change at NICE, i.e. looking to provide opportunities for people being involved in committee meetings by videoconference (a bit like Skype), instead of having to be present at the meeting venue on the day.

We are hopeful that the team developing this particular guideline will be able to provide another way of being present at the committee meeting - however, they're just about to move to new offices, and aren't yet sure what it is that they can offer in terms of videoconferencing.

If you would like to apply still on the basis that we hope we will find a way to make it work for people in your situation, we would very much appreciate that. However, I do understand if you don't want to.

If you don't or would like another way to get involved, you are able to take part in the consultations that will happen for this guideline. A consultation on the draft plan for the guideline (what NICE refer to as a "scope") is currently open until the same time as this recruitment.

This page of our website has full details: nice.org.uk/guidance/indeve.... Please ignore the information in step 1 about not being able to comment as an individual - we are currently in the process of updating our website. Go straight to step 2 if you wish to take part.

Consultation on the draft guideline will happen from 22 July - 3 September 2019 - which is a long way away, I know - but perhaps a date for your diary if you are interested.

I'm sorry that we don't have the resources currently to facilitate public involvement through better use of focus groups and surveys. I hope that the opportunity to comment on draft documents will go some way to helping you feel that you can have a say though.

Thanks again for your interest in this work - we really couldn't do it without people like you!

Jess

[junewilliamson140637 in reply to Joanne1972]

How I agree with Jo when you have chronic pain you cant take part in life, let alone meetings etc.It is rather like the wonderful pain clinic ,best in the country is going to be,as long as you can come and sit on a hard chair for two hours at a time while we talk about excerising etc.I have been housebound for the last three months as my pain has got so much .worse.lying on the floor crying with the pain taking anything and everything ,hoping something will work.Reading the first lines of nice advert I thought brilliant something going to happen at last.But like Jo so disappointed as they won't be able to reach patients who suffer chronic pain.Yes if it was questionaires I would gladly take part.j

[Tetchy13]

Hi, I would like to be involved in this process, but like everyone else have good and bad days with chronic pain.

I have recently attended a course at my local hospital regarding chronic pain and it opened my eyes that you are it alone and there are many people like me that have their life turned upside down by chronic pain. I would like to become involved as it seems this course is a well kept secret - so much it took me 5yrs to get onto it.

As previous comments are thereany areas that I should not complete in the application to become involved. Techy13

[johnsmith]

Thank you for the information. If you read my reply to various posts you may find items of interest to the proposed chronic pain committee. I would be very interested in the possibility of joining the committee if that was possible.

[EvilAunt]

Wish the States would include us. Feeling like they're trying to kill us off.