UK House of Lords/ House of Commons - relevant people and questions

[Nightsong]

consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff

Another psychobehavioural clinic, then. Precisely what we do not want and do not need.

At a national level, the ME/CFS Final Delivery Plan, which the Department published in July, includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

To the pwME who are in favour of this plan, I would ask: who would run such a clinic? Is there a suitable candidate ready, waiting and willing? Does the NHS have a good track record when it comes to providing clinics for, and services to, pwME? Why would they set up a new clinic that was at odds with most of the existing provision? Who do they turn to when it comes to issues involving ME/CFS?

If this is attempted at the moment it will be a disaster. They will turn to BACME; they will turn to NICPM, they will turn to the existing psychobehavioural clinics. Pretty much everyone with "professional" experience of specific involvement with ME/CFS in the NHS is involved with those clinics and has fixed ideological beliefs about what ME/CFS is and isn't. They are the problem.

If this continues, we're going to end up with a BACME stalwart - or, worse, some Maudsley liaison psychiatrist or behaviouralist - running a clinic whose staff publish a constant stream of gibberish in the Journal of Psychosomatic Research, with all the authority that comes from being the national specialist referral centre. As I understand it Norwegian patients are trying to get their "National Competence Centre" - that they themselves campaigned for - shut down. The same thing will happen here, but it will be incredibly difficult to get rid of once up and running.

No such attempt should be made until radical changes are made to NHS policy & existing service provision for ME/CFS.

 

[Peter T]

No such attempt should be made until radical changes are made to NHS policy & existing service provision for ME/CFS.

I strongly agree, the available evidence, albeit limited, suggests that closing the existing specialist clinics could actually result in better outcomes for people with ME/CFS.

 

[BrightCandle]

I don't think you can put the NHS in charge of solving this problem, I don't think it has the sort of culture that can solve this problem without resorting to harm, they believe it too deeply they will twist any guidelines into the same thing until there is a proper approved treatment, and even after. Until our politicians truly accept that and aim to solve it I don't think we will see anything but the lastest rename of exercise and CBT clinics

 

[Sean]

The ME/CFS service team consists of a wide range of skilled staff, including consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff.​

Which is the problem.

 

[Binkie4]

There has been no specific comparative review on the level of funding for research into ME/CFS compared to other illnesses. The Department invests over £1.6 billion each year on research through the NIHR, including on ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

Should the next step be, since it is not already being done, to ask for a comparative review of the level of funding for research into ME/CFS compared to other illnesses?

Tessa Munt made some good points with comparisons of how funding is spent in her Westminster Hall speech. 60p per person with ME per year for the last 12 years. No money allocated with the Delivery Plan which is being rolled out by multiple speakers to demonstrate commitment to ME. It is a mockery. Do we think the Under Secretary who rolled out above answer actually knows anything about ME and its funding?

 

[Hutan]

The ME/CFS service team consists of a wide range of skilled staff, including consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff.

I feel sure that there was a wave of grim laughter as people with ME/CFS all around the world read or heard that line. Certainly I laughed.

A wide range of skilled staff, with two of the four examples given being 'consultant clinical psychologists' and 'assistant psychologists'? I felt like suggesting that they could have included 'student psychologists doing summer work experience placements' to make the range even wider.