Format of NICE stakeholder meeting?

Amw66 said:
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
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Agree.
 
Barry said:
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.
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Do we know how a patient rep gets chosen for the guideline development group?
 
Not a substantive point on issues that need to be addressed in guidance but I would suggest that in engaging with people with ME as stakeholders NICE need to adopt an inclusive approach to meetings that doesn't rely on travelling to physically be present in a meeting room.
 
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Barry said:
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.
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Remember that physiotherapists, psychotherapists and psychiatrists are also 'stakeholders' here. My feeling is that what should really happen is that a NICE committee free of stakeholders should make a decision based on the evidence. It is a dire reflection of the commercialisation of healthcare that everything is now considered in terms of stakeholders, with the tacit implication that this first and foremost means the people who are going to make money out the situation. When rituximab was licensed for RA, I , the inventor of the treatment, was not consulted, because I was not making any money out of it. Only the drug company was allowed to provide evidence.

At least it seems that NICE have realised that there is a need for a patient representative on these committees. I take the point about being able to attend but someone like Charles Shepherd is well placed to fill that sort of role and he manages to get to meetings on a regular basis.

I appreciate people's concerns about severe patients and children but my worry is that we do not have any specific evidence relating to these issues, of the sort that guidelines can be based on. Special pleading from patients without evidence makes special pleading from therapists without evidence legitimate too. And I think to a considerable extent the best way to protect vulnerable patients is to remove the inappropriate guidelines about therapist-delivery treatments. These seem to be what legitimises inappropriate care. If there is no guideline for CBT or GET then mumbo-jumbo based inpatient treatment units are not going to get funded by commissioning groups.

And I think it will be very interesting to see how doctors who deal with ME/CFS react if CBT and GET are removed from the guidelines. I can imagine that those without wide angled perspectives will say to themselves 'gosh, why have they been removed'. I think it is important that the answer is 'because it was realised that there was no evidence base' not 'because the patients insisted'.

I know this goes against the grain but spending a lot of time with legal cases, as I do, I appreciate the need to leave decisions to an impartial judge. One always wants to make another point, but then the other people can make another point and it goes on for ever.
 
@Jonathan Edwards
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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You invited requests for input.
I would be happier that the patient perspective would be put strongly if the person reporting from each table were a patient not the NICE representative.
It is easy for the essence of a discussion to be seen differently by different participants. Let us ensure that the patient voice is strong.

EDIT: crossposted with Jonathan Edwards
 
If the guidelines remove GET and CBT recommendations that would be a huge step forward. I would like the guideline to go one step further and say that exercise based therapy is contraindicated. Evidence for this includes the 2day CPET research, the recent study in Newcastle showing faulty energy metabolism in blood cells, and large patient surveys.

I think guidelines can include stuff about symptomatic relief, not just cures, so there is a place for things like pain and sleep medications.
I think it should also include pacing using heart rate monitoring as part of symptom management.

I agree with @Jonathan Edwards that we need to be careful what we wish for in asking for stakeholder inclusion. The guideline needs to be written by experts in examining evidence. I would like patient representation too. Charles Shepherd seems to me to be a very good suggestion for this role.
 
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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I think they are good points.

I suspect that there needs to be an underlying subtext that patient groups have looked at the research and understand the methodology and evidence and NICE can't get away creating bad advice not supported by the evidence. I think you turning up along with well informed patient advocates will help here.

I tend to think there are some useful things in the current NICE guidelines but they often get lost.
 
Jonathan Edwards said:
Remember that physiotherapists, psychotherapists and psychiatrists are also 'stakeholders' here. My feeling is that what should really happen is that a NICE committee free of stakeholders should make a decision based on the evidence. It is a dire reflection of the commercialisation of healthcare that everything is now considered in terms of stakeholders, with the tacit implication that this first and foremost means the people who are going to make money out the situation. When rituximab was licensed for RA, I , the inventor of the treatment, was not consulted, because I was not making any money out of it. Only the drug company was allowed to provide evidence.

At least it seems that NICE have realised that there is a need for a patient representative on these committees. I take the point about being able to attend but someone like Charles Shepherd is well placed to fill that sort of role and he manages to get to meetings on a regular basis.

I appreciate people's concerns about severe patients and children but my worry is that we do not have any specific evidence relating to these issues, of the sort that guidelines can be based on. Special pleading from patients without evidence makes special pleading from therapists without evidence legitimate too. And I think to a considerable extent the best way to protect vulnerable patients is to remove the inappropriate guidelines about therapist-delivery treatments. These seem to be what legitimises inappropriate care. If there is no guideline for CBT or GET then mumbo-jumbo based inpatient treatment units are not going to get funded by commissioning groups.

And I think it will be very interesting to see how doctors who deal with ME/CFS react if CBT and GET are removed from the guidelines. I can imagine that those without wide angled perspectives will say to themselves 'gosh, why have they been removed'. I think it is important that the answer is 'because it was realised that there was no evidence base' not 'because the patients insisted'.

I know this goes against the grain but spending a lot of time with legal cases, as I do, I appreciate the need to leave decisions to an impartial judge. One always wants to make another point, but then the other people can make another point and it goes on for ever.
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If the international paediatric primer could be used as an official resource this would be a step forward - whilst consensus documents are a compromise , this is better one, and is wholly different from the UK one.
The removal of GET and CBT for paediatrics too, would be valuable for those that do have ME.
Note - there appears to be a large proportion of adolescents and children with Autism ( specifically aspbergers ) as a comorbid condition - CBT has a detrimental effect to them ( I will try and find some back up for this, I have a friend who is a speech therapist specialising in autism in children who has confirmed this to me)
 
Jonathan Edwards said:
I appreciate people's concerns about severe patients and children but my worry is that we do not have any specific evidence relating to these issues, of the sort that guidelines can be based on.
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In terms of severe patients I think it is worth ensuring the guidelines list symptoms that people do see as part of ME sometimes doctors seem surprised at the range of symptoms people suffer from.

The other thing is access to medical care for the house bound. I think the current guidelines do include a recommendation for home visits for people who are unable to get to the GPs but this could be strengthened as I believe surveys have shown many patients find it hard to see a doctor.

[Edit]
But I do think the most important thing is the removal of GET and CBT.
 
Jonathan Edwards said:
I doubt that CBT is in the guidelines for cancer. I think we should keep things simple.
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Ahh, OK. I was getting confused by the fact I know for sure that cancer sufferers are offered (often much needed) counselling, but I obviously inferred too much from that.

Nonetheless, is there a legitimate application of supportive CBT re ME? It's been mentioned by quite a lot of others - including CS - that that is the case. My real point is that if people such as Charles are validly saying supportive CBT is OK for ME, then we should not just bake a blanket statement to NICE that "CBT" (tacitly implying any kind) is unacceptable, because we would be undermining each other and scoring an own goal.
 
Barry said:
Nonetheless, is there a legitimate application of supportive CBT re ME? It's been mentioned by quite a lot of others - including CS - that that is the case.
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If we do not actually have any evidence then I see no reason for it to be in a guideline. I would personally call supportive counselling supportive counselling. I have no idea what the words 'cognitive behavioural therapy' really mean. All I am proposing to say is that there is no evidence that CBT is effective for ME/CFS so there is no reason to have a guideline recommending it specifically.
 
Anyone at anytime has the right access CBT or supportive counselling for just about anything, there's is no need for it to be named as a specific treatment for anything especially when there's zero evidence it achieves anything.

By attaching it to specific illnesses within a guideline its just going to be misleading for ill informed doctors and patients in terms of the efficacy.
 
Esther12 said:
At the moment, there's no good evidence that supportive CBT is useful for ME/CFS. I think that having CBT in the guidelines in any way would risk letting things continue as they are.
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Yes I agree we need to keep the message very simple so that it cannot be misunderstood. The guidelines should include reference to treating symptoms using standard methods so for example if someone is also suffering from depression due to being ill and CBT could help with this (I've no idea if this is the case!) then that would be covered by a statement telling doctors to thread symptoms with standard methods.
 
Esther12 said:
At the moment, there's no good evidence that supportive CBT is useful for ME/CFS. I think that having CBT in the guidelines in any way would risk letting things continue as they are.
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I'm struggling to think of a way in which 'supportive CBT' would be useful to me in 'managing' ME/CFS that would be superior to a mix of (my personal) experience and common sense.
 
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