Discussion in 'General ME/CFS News' started by Dolphin, Jun 22, 2018.
If they really want PWME to take part, they don't appear to have thought this through.
I was a"registered Stakeholder in 2017 and responded to Public Consultation
. I was registered again in January to attend the engagement meeting.
I was deregistered in January Meeting by NICE as they said, THEY had made a mistake, don't register"local" groups, only national (though I am a member of Healthwatch), who are allowed and are "local".
I was registered AGAIN for the May Scoping with a "national Group" LOcalME...........
I did not received the May invite directly.
I have not received this Draft Scoping directly.
At the May meeting I clocked others who are "Local" groups!!!!!!
I have heard from one other attendee that they too did not receive the Draft Scope notice.
Did anyone else who went not receive notice?
If I signed up for the Guide Group, who is to tell if I would ever receive the necessary to attend?
I should think there are many of us here who would like to take on this role, but it is simply impossible because of our health. I'd love to volunteer, but it's a complete non-starter in my circumstances.
The result will inevitably be that any patient representatives they appoint will have to be either recovered, in remission or very mildly affected. However good a grasp of the issues they may have, it seems to me inevitable that it will be difficult for most people in such circumstances to truly represent patients' needs. I am sure there are some, but will the right ones be appointed?
I would love to see NICE taking a completely different approach, with a larger representation from patients giving feedback throughout the process via mediums other than physical attendance at meetings.
They did discuss severe patients taking part via Skype etc. That's not clear from this, but I expect this will form a separate group that checks in with and provides evidence to the main group? I suspect they're still figuring that bit out.
They should have thought a bit more because it is an obvious question and they are just annoying patients when they could have put in a sentence to say we will be coming forward with proposals shortly. Poor comms messaging
ETA I think th NICE team involved in this should each be buddied up with a person with ME. For a chat by message phone or coming round to visit. That will give them an understanding of the audience they are communicating with. preferably people who are housebound
Not a bad suggestion, though an unlikely thing to happen. They were taking suggestions for how to include severe patients, so I would recommend that people submit ideas directly.
Its not just patients as a carer (with no support) I can't go to meetings in London but I would happily join via Skype.
I don’t understand why they use the venue they do. Surely a hotel beside an airport would be easier travelling for all. If I were to go I must fly. If folk needed an overnight they could get a good deal by bulk booking. Train access would also be good if right airport used. Central London is pretty darn inaccessible to everybody bar those in central London, and even then travel is difficult and/or costly.
I would love to get involved. But I can’t really see how.
I definitely can’t fly on the same day as do a meeting. But for the Jan meeting NICE would only fund one overnight. (The other overnight I needed was funded by Hope4ME&FibroNI.)
Then last time my husband travelled with me. NICE funded his flights, which I appreciated, but even if I did take a deep breath and travel alone, I still would be an expensive option for them.
And to be honest Skype isn’t the same.
If a bit extra money than NICE are prepared to offer for expenses makes the difference between having good patient reps and not (I'm thinking of funding for things like eg an extra nights hotel stay - that can make a big difference to pwME ) perhaps a fund patients can contribute to could be considered. Just a thought.
I would be happy to go to meetings but wouldnt want to do the reading and responding to docs in a clever, coherent way. If we could do a job share I could manage to deliver the right messages on the day and then we could have a small team doing the other work?
That's a kind offer, @Sbag, but I think we really need someone who can read the docs, understand and remember what's in them as well, so they can respond with full knowledge of exactly what's there, and think on their feet, so to speak.
I could probably manage that, I would just need to do some homework and make notes. I'm sure there are better people but I am happy to be a backup option if there aren't enough.
I just hope the 'bad guys' aren't busy prompting their tame 'patients' to apply.
they need to hold webinar type meetings where everyone is online with audio and access to a screen for sharing any slides or notes
nobody needs to incur the financial or physical cost of travel and ME people included - normals wont like it but they would have to get used to it
I think these work if you have 2 or 3 people who know each other. But for a big group, with difficult issues to discuss, I think it would not be satisfactory. Nothing beats face to face
Why London? Why not multicentred to enable wider input ?
Whilst there may have been some thought re patient engagement this is not coming over.
If you want meaningful engagement, with a group that will have their health impacted through travel, then skype participation seems a no brainer, but one that should have been planned as a basis to start from, not as an afterthought.
Hosting development meetings/ workshops in different locations around the country would make participation a possibility for some who could not factor significant travel in and maintain critical assessment function.
There just seems to be a mental block , even from charities involved. It is as if they have no concept of the impact of the condition at all.
If they want the whole group to be able to attend every meeting, having the meetings in one place is likely to be better than making people find new ways to get to different locations every couple of months.
Some sort of involvement for those not able to attend via skype would be good though.
Yes, that makes sense , but there must be other ways of achieving this.
If you had to have a single centre why London- why not somewhere geographically more central?
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