Format of NICE stakeholder meeting?

Keela Too said:
I have now heard back and this is to be the format for the day:

“The format of the meeting will follow some short presentations from NICE staff at the start of the workshop, followed by the bulk of the meeting being a time for everyone to openly discuss what is of most importance with this guideline. We will be splitting all stakeholders into smaller tables with two members of NICE staff where we can then talk about specific points that are of importance for this ME/CFS topic. This will provide ample time for you to raise any comments you may have and we find it allows an excellent way for discussion to take place around each topic of interest. The NICE members of staff on each table will be taking notes of all discussions during this time.


At the end of the meeting, each table will then feedback what they have discussed to everyone else. We will also be in contact again later this week to confirm specifics around the location of the meeting venue.”
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Thanks @Keela Too :thumbup:
 
Good Luck to all those who go. Hoping your voices are listened to and heard.

I am sure that Tymes Trust will raise this, but it would be good to have it mentioned on several tables:
  • Teenagers with ME are still being threatened with "intensive inpatient treatment" if they do not get better within a "few weeks"
  • One teenager has recently been made significantly worse by inpatient treatment, yet those in charge of her care plan to continue with this.
These are just 2 recent cases we know about.
How can this approach be allowed to continue, when there is so much biomedical science showing the serious dangers of too much exercise for people with ME.
Who can these families approach to stop this happening?

Anyone planning to take DVDs of Unrest to pass on to NICE staff? It should be accessible on Netflix by then.
 
Received an agenda today:

  1. Welcome and introduction to NICE, Philip Alderson, Clinical Adviser, NICE, 10 minutes
  2. Introduction to the update of the guideline, Mark Baker, Centre for Guidelines Director, NICE, 10 minutes
  3. Introduction to the National Guideline Centre, developer, Norma O’Flynn, Chief Operating Officer, National Guideline Centre, 10 minutes
  4. Introduction to the Public Involvement Programme, NICE, Victoria Thomas, Head of the Public Involvement Programme, NICE, 10 minutes
  5. Group discussion, All – facilitated discussion session in small groups, 1 hour 40 minutes
  6. Closing remarks and next steps, Philip Alderson, Consultant Clinical Adviser, NICE, 10 minutes
 
Just to comment that there does not seem a time allowed for the different tables to feed back as per Agenda
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After point 5, facilitated discussion, it seems to run into closing remarks for which 10 mins has been allocated. Maybe the 1hour 40 mins for discussion allows for group feedback, but this isn't specified.

Also no breaks are specified.

Anyone else feel this is rather vague? 10 minutes for closing remarks and next steps seems very brief.
 
It looks fairly dire. The opening bureaucratic talks will take an hour. There will then be table discussions but it seems there will be no general discussion. Presumably there will just be hurried bullet point feedback from each table, probably from the NICE representatives. It looks a bit nominal as a stakeholder input session but may be better than nothing.
 
Barry said:
Possibly being a bit dense here, but can someone tell me what the key objective(s) of this meeting is? Do we think the Next Steps will come up with some clear actions to take forward, rather than just a woolly wish list?
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If there is one I guess it is to tick the box of public involvement. But that is not such a silly objective and with luck it will mean that some people come away a bit wiser.
 
Jonathan Edwards said:
It looks fairly dire. The opening bureaucratic talks will take an hour. There will then be table discussions but it seems there will be no general discussion. Presumably there will just be hurried bullet point feedback from each table, probably from the NICE representatives. It looks a bit nominal as a stakeholder input session but may be better than nothing.
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Box ticking
 
My assumption is that during the meeting I will have a reasonable chance to voice one important point and perhaps one or two more if very lucky. I am happy to receive suggestions. However, I am working on the basis that the points this group will want to make are:

1. The evidence for the recommendation of CBT and GET is not of sufficient quality to be usable for guideline policy. There should be no positive recommendation for these modalities.

2. There needs to be emphasis on the importance of continued follow up of ME/CFS patients to ensure that a diagnosis of ME/CFS is not in fact a misdiagnosis of some other treatable condition or masking the existence of another treatable condition.

3. Ongoing care in terms of general symptom management and provision of support for disability must be provided. I agree with Charles Shepherd's analysis here that the current guidelines contain a number of sensible points.
 
Jonathan Edwards said:
My assumption is that during the meeting I will have a reasonable chance to voice one important point and perhaps one or two more if very lucky. I am happy to receive suggestions. However, I am working on the basis that the points this group will want to make are:

1. The evidence for the recommendation of CBT and GET is not of sufficient quality to be usable for guideline policy. There should be no positive recommendation for these modalities.

2. There needs to be emphasis on the importance of continued follow up of ME/CFS patients to ensure that a diagnosis of ME/CFS is not in fact a misdiagnosis of some other treatable condition or masking the existence of another treatable condition.

3. Ongoing care in terms of general symptom management and provision of support for disability must be provided. I agree with Charles Shepherd's analysis here that the current guidelines contain a number of sensible points.
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Good points. I would appreciate if paediatric issues could also be raised if possible. The "Karina" experience is alive and well in the UK
Social services involvement subsequent to school attendance issues also continues to instigate stress, fear and exacerbation of illness symptoms to sufferers and their families, many of whom are too scared to rock the boat for fear of losing their child
We need to be their voice
 
I would like to be reassured that the consultation with stakeholders will be an ongoing process, and not just a PR appeasement exercise. We really do need to feel we can trust that NICE are genuinely trying to do the right thing, and a good consultation would be a massive plus. For example, we could get excellent vibes early on and part way through, but if the BPS crowd started to queer the pitch again later on, as they might if consultation is not assured, it could all go horribly wrong.
 
Andy said:
I'm afraid not. I wouldn't be of much use to be fair, the travel to get to it would have too heavy an effect on what processing power I have left in my brain nowadays.
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Sorry that is the way it is for you now.... but I do understand. A couple of years ago I could not have contemplated this. As it is my husband is taking a couple of days off work to accompany me to London. I’ll do my best to give a strong patient perspective.
 
@Jonathan Edwards - I think there also needs to be some mention of the most severe.

At the moment the guidelines don’t seem to give the very severe enough protection from well-meaning but misguided interventions. Also hospital attendances for the very severe need to be managed differently due to the light/noise/stimulation, which havethe potential to substantially worsen the situation.
 
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