6.12 pm
Baroness Northover:
The main outcome data have already been independently analysed by a Cochrane Collaboration group and a paper is being prepared for publication.
Was this expected? Thanks.
...I understand that concerns have been expressed that patients may have their choices about care restricted because the PACE trial supports their non-recommendation by NICE or that patients may be forced into treatments they do not want because they are recommended. I assure noble Lords that clinical guidelines published by NICE help to promote consistency but recognise that patients are individuals who may require different forms of management. Clinicians are therefore free to adapt the guidelines when deciding, in consultation with their patients, the most appropriate treatment...
Concern has been expressed that the findings of the trial will be used to reduce the number of people with CFS/ME on state benefits. That was flagged up briefly by noble Lords. I should like to dispel straight away the idea that CFS/ME is not recognised by the Department for Work and Pensions as a potentially serious condition. For example, there are no targets for finding individuals fit for work in the work capability assessment process.
The noble Baroness, Lady Meacher, raised this particular issue and asked whether patients who do not comply with the CBT or take the treatment recommended to them might have their benefits withdrawn. I can assure her that that is not the case.
Entitlement to employment support allowance is not based on compliance with specific treatments and anyone claiming ESA will undergo the work capability assessment. That assessment is founded on the premise that eligibility should not be based on a person’s condition or the treatment regime for it but rather on the way that that condition limits their functional capability. I am happy to flag this debate to the DWP, as the noble Baroness asked me to, in regard to the availability of services.
I think, Val, that you had at one time posted a paper from Wessely or White perhaps that from memory suggested people should be 'encouraged' to undergo CBT and GET in relation to benefits. Although my memory is for crap so it could have been insurance.
Whatever, I have certainly seen it said among patients that they have felt pressured into doing these therapies and that if they didn't then it would affect their benefits. This then is a good confirmation of the situation.
Also it goes some way to reaffirm the position stated in NICE that patients do not have to undertake these therapies - period. If they do not wish to. If you don't 'like' the thought of these two things, and don't want to try them, or whatever the reason, you don't have to.
£5 million and all this debate during and after - and I can't see the results having settled many concerns that have been expressed knowledgeably along the way. I also can't see patients 'flocking' to queue for treatment encouraged solely by the promise of this level of recovery. What amounts to 'talking therapy' and 'exercise' will still be seen - rightly in my view - as having no intrinsic value against something for which a drug is required or is incurable. So it's still pants in my view. I am talking about PACE here Val
Will these results encourage more funding for 'treatment centres'? That's something worth considering. I am still reading through the transcript - I jumped to the end and need to go back - but Baroness Meacher said about PACE demonstrating a need for at least the 13 sessions and intense follow-up and support on the ground in order to try and maximise the chance patients outside of Trial could benefit.
I honestly do not believe that if the PACE manuals were integrated verbatim into treatment centres they would achieve anything like even the 22% 'recovery' we have been discussing on the recovery thread. CBT and GET are implemented in clinic - in my experience - independently and adaptively and not in accord with any manual. So the results could be better or they could be worse. And delivery will depend on the qualities of the therapist, the number and quality of sessions and therefore the money available in each health authority and the priority afforded ME by CCGs.
For the purposes of Trial I understand they needed a model against which to measure. A standard approach afforded to each patient enrolled. This is where I think a Trial differs markedly from clinical practice where on-the-ground professionals employ their own expertise and tailor any programme with a more flexible approach. At least they should be aiming to do so as per NICE. We also have no quantitative analysis of 'activity management' or support afforded to severe patients. I suspect - again from experience - that therapists delivering local provisions employ a mix of these and other approaches in their interaction with patients.
NICE contains elements pertaining to research on the ground and I'd like to see how many patients are accepting of these treatments and are shown to benefit from them - in whatever way. I think to have more than six sessions of therapy is above average and many people are treated in groups and not individually. It would of great benefit to the community to see how effect clinical delivery actually is with a local study or two perhaps.
I'd also like to know how many people decide not to accept any of these approaches and to see why they might do so in a similar local paper. And compare to how patients without any intervention - and with only drug management - manage. Let's get some data and assess this on the ground. Take patient surveys to the next phase.