Format of NICE stakeholder meeting?

Thanks @Keela Too

 

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
.
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.

 

Surely the content of at least one of those 10 min speeches could have been sent before hand with the agenda.

I may have missed this, if so apologies, but can someone confirm who all the people going from S4ME are?

 

Just one person, @Jonathan Edwards

 

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?

 

Are you not going @Andy?

 

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.

 

Thanks, Andy.

 

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.

 

So long as it delivers more substance than just ticking the box, that would be a highly laudable initial objective.

 

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.

 

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.

 

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.