UK North Wales - Living Well Service for ME/CFS and Long Covid, Betsi Cadwaladr University, Claire Jones

[Hutan]

That ad suggests the service is probably not safe for people with ME/CFS.

I've had posting these on my to do list for a while now, kindly sent by the ME Voices Wales team:

Answers to the questions asked at the Betsi Cadwaladr UHB's Living Well Service presentation mentioned upthread:

e.g.
19. Can you explain why psychologists are running courses for people with a neurological illness? What medical knowledge do they have for this job? This is not a personal comment on them, but on the role of psychologists generally, which people assume to normally be connected to psychological problems.

We understand why people may have this concern, especially given the historical ways ME/CFS has been misunderstood and treated. Psychologists can work in many different healthcare settings, including physical health settings, with a range of different ways that they can contribute to the health and wellbeing of patients.

The psychologist’s role within the multidisciplinary BCUHB Living Well service is to help people living with ME/CFS (and the wider MDT) to understand and adapt to the psychological consequences of living with a disabling and often unpredictable physical condition. The ways in which they do this may include:

• Supporting people with the substantial changes that illness can bring to identity, relationships, employment, education, independence and future expectations;
• Helping people develop psychologically informed strategies for managing symptoms, uncertainty, setbacks and relapses
• Supporting people with ME/CFS who experience difficulties with nervous system regulation, for example by helping them understand and respond to the effects of autonomic arousal, sensory overload, stress and disrupted sleep
• Assessing and treating the psychological consequences of living with ME/CFS such as anxiety, depression, panic, trauma-related symptom, adjustment difficulties, grief and loss, where these are present
• Helping people to develop a sense of agency and control over how they manage their illness and the interactions with healthcare providers they may need to have
• Supporting the multi-disciplinary team to understand all of the issues described above and to understand how to take this into account to tailor their support and intervention appropriately
• Supporting communication and collaborative decision-making within the wider multidisciplinary team
• The BCUHB Living Well Service is also co-led by a Consultant Clinical Psychologist and a Consultant Physiotherapist. The benefits of this co-leadership model are that the service has a truly holistic focus and range of expertise driving the person-centred multi-dimensional approach

It's all very vague. It is claimed that there is compliance with the NICE Guidelines, but we know that there are holes in those large enough to let through things like symptom-contingent GET and goal setting that encourages people to try just a bit harder.

 

[Kitty]

I wonder if they realise how off-the-scale insulting it is to call it the Living Well Service?

 

[Nightsong]

The psychologist’s role within the multidisciplinary BCUHB Living Well service is to help people living with ME/CFS (and the wider MDT) to understand and adapt to the psychological consequences of living with a disabling and often unpredictable physical condition. The ways in which they do this may include:

Someone struggling with their mental health as a downstream consequence of any chronic illness can be referred to ordinary local mental health services. You don't see clinics for other conditions that are "disabling and often unpredictable" that have ringfenced psychologist-run clinics.

And there's absolutely no reason for ME/CFS to be lumped in with FND and "complex breathlessness" - unless, of course, you think they're all just psychosomatic expressions of different kinds.

While I have the energy, I should mention that NHS job adverts are a really good way to keep track of what the NHS psychobehavioural clinics are doing. They often lie to patients, but they can't lie about what they're actually doing to prospective staff. They're often listed in one or two places: on the NHS's own site, and on BMJ Health Careers, which can be searched separately.

This link:

NHS jobs mentioning ME/CFS (custom search, limited to the last 7 days)

is for a search of the NHS jobs site for all new jobs matching either "myalgic encephalomyelitis" or "chronic fatigue" that were created or updated in the last week, with AI search mode turned off for the query. At present there are five such jobs.

 

[Hutan]

I also have a copy of the slides for the presentation, but even chopping them in half, the file is too big to load here.

The slides actually are not egregiously bad. If I hadn't seen that ad that @Nightsong posted upthread, I'd say that they were heading in a good direction. But, it is hard to see how any service that caters to both ME/CFS and FND could be good. So, if you are a young woman with some history of trauma, perhaps you get the FND label, especially if you are happy to accept it. Other people perhaps get the ME/CFS label. Maybe the treatment is the same.

e.g., where appropriate CBT, CFT ACT, EMDR for people living with persistent physical symptoms and provide specialised advice concerning their management.

Personally, I would keep far away from CBT and CFT ACT, but it is possible with the right therapist and the right patient in the right circumstances, they could be helpful. So often, they are harmful though.

I'm assuming EMDR is: (description from the Cleveland clinic website)

Eye movement desensitization and reprocessing therapy, commonly known as EMDR, is a mental health therapy method. EMDR treats mental health conditions that happen because of memories from traumatic events in your past. It’s best known for its role in treating post-traumatic stress disorder (PTSD), but its use is expanding to include treatment of many other conditions.

which sounds... questionable.

It's hard to be sure that bad things are happening. It's just that we've seen so often where there are hints of quackery in the materials given to the public, it's actually a paddling pool full of ducks in the clinic.

 

[Hutan]

So, we can expect to see research coming out of this clinic. I think that will really be when the colours are nailed to the mast.

 

[Hutan]

Appropriate and cost effective diagnostics and treatment...
So, it's a way of taking control of what diagnostics are done.

Presumably 'primary and secondary prevention of CVD' is talking about cardiovascular disease, and presumably it means screening for heart disease and then making sure people are encouraged to exercise and lose weight.

'Enables the person to be a partner in their care'
That shows they don't get it. A person is never a partner in their own care, except children and people who have been judged to no longer have capacity. Even then, they get to veto some care and interventions, to the extent that it is reasonable.

People who do have capacity are in fact managers of their care, they are not partners. They get to say what they do and don't want to happen. The health professionals don't have to agree, (although generally they don't have to provide a service if they disagree). But, it is not a negotiation. The health professional provides the information, as clearly and as without bias as they can manage. And the person decides what care they want. Health professionals who see themselves as 'partners' with their patients fundamentally misunderstand their role. They are service providers, often highly trusted and respected, but still service providers, in much the same way that car mechanics are.

 

[Hutan]

It occurs to me that there might be some interesting material obtainable from an FOI about the justifications made for this service and the folding of ME/CFS into the service. I assume the assumption is that this clinic will save the health system money.

I wonder if they realise how off-the-scale insulting it is to call it the Living Well Service?

It seems that 'co-production named our service'.

 

[obeat]

Mindfulness on week 2 but pacing delayed until week 4 !

 

[Jonathan Edwards]

I recall there was some previous interest in what this clinic actually did in practice. A new job advert for another psychologist, & its supporting documents, offers further clarity:

Thanks.
So it is as bad as it could be.
The arrogance and lack of understanding of basic human nature (including their own) of the psychologists is stark. Heal thyself for goodness sake.

 

[bobbler]

I've had posting these on my to do list for a while now, kindly sent by the ME Voices Wales team:

Answers to the questions asked at the Betsi Cadwaladr UHB's Living Well Service presentation mentioned upthread:

Just so that I'm clear

Who is the ME Voice Wales team? are they eg a group of ME patients/representing them?

And if these are answers to questions asked at the presentation (that ME Voice Wales have passed on) can I assume these are answers given by the LIving Well Service themselves?

DO we have any detail of what the ME patients or ME Voice Wales actually think of it/whether they agree that 'oh no this is different, you just don't understand this now isn't bad psychology because we have written it differently (but are deluded or deceitful and definitely do not understand the key aspects needed by those with the condition and how eg suggesting CBT for sleep will be harmful for most who are sent off for it ie those with sleep reversal/issues that relate to PEM and affect sleep are likely to be targeted by it and harmed, those who don't have the same type of 'sleep issues' aren't targeted, aren't harmed the same way because of this difference in power and mismatch if it is just they'd like lullaby type stuff and it isn't PEM/the illness flaring end up having their responses used in order to silence the former group and suggesting it not working is them not wilfully ignorant staff).

 

[bobbler]

Someone struggling with their mental health as a downstream consequence of any chronic illness can be referred to ordinary local mental health services. You don't see clinics for other conditions that are "disabling and often unpredictable" that have ringfenced psychologist-run clinics.

And there's absolutely no reason for ME/CFS to be lumped in with FND and "complex breathlessness" - unless, of course, you think they're all just psychosomatic expressions of different kinds.

While I have the energy, I should mention that NHS job adverts are a really good way to keep track of what the NHS psychobehavioural clinics are doing. They often lie to patients, but they can't lie about what they're actually doing to prospective staff. They're often listed in one or two places: on the NHS's own site, and on BMJ Health Careers, which can be searched separately.

This link:

NHS jobs mentioning ME/CFS (custom search, limited to the last 7 days)

is for a search of the NHS jobs site for all new jobs matching either "myalgic encephalomyelitis" or "chronic fatigue" that were created or updated in the last week, with AI search mode turned off for the query. At present there are five such jobs.

Agree with your first para - and the deceit that is going on here underlines why its removal from the ME/CFS guidelines becomes vital and reverting to - if needed (and I think it may but under the leadership of eg the stuff going on that @Joan Crawford is involved with) to be 'de-bigoted' to make safe then it still needs to be entirely separated - it being a proper service that looks at the exclusionary nature of standard provision due to bigotry, and yes that word needs to be used instead of 'stigma' that of course puts other people's inappropriate behaviour and beliefs doign harm to a group of patients into a reframing suggesting its due to something implicit in the patients rather than basically something that needs to be removed by recruitment/HR processes and protectinos being put in place.

We still have a bunch of people who have manipulated the concept of the entire medical condition in order to continue utilising their harmful tools and approaches. Instead of this being in-line with the spirit of the guideline, if someone is trying to claim that then they are doing so by going thru line-by-line trying to justify each is 'OK cos' even though it adds up to 'we are treating all these issues as if they are healthy people who just won't sleep/exercise/sleep normally' as if that is OK, rather than bigotry.

The fact the writer of this and those above them choose not to get this, or choose to mislead those who might oversight it is concerning.

That they decide to continue to delude themselves that it is offering 'help' when it is 'harm' to the very specific conditions they claim to treat because of a fallacy and sophism in writing it that 'because it has no evidence of either for those who don't have ME/CFS so we can carry on regardless' is breathtakingly cruel and callous - and yes that's the term for the doing action of the person behind it deciding those they harm don't deserve to be heard so that one can carry on doing it, not an emotive word as a 'reaction' to that person receiving it.

Let's stop 'reframing' the behaviour behind this to be something deserved by or 'in the reaction of' those targeted by it... it's not 'therapeutic' as to why they do it (the reframing), and there is a different word used for it in any other organisation and circumstance.

And it is damned well not proper psychology in as far as the type used to care about no hurting individual and being a good person, manipulative type where the word is used in eg 'experiments' that weren't for the good of the subjects or other contexts (psychology is of course studied in contexts of how coercion etc can take place) - I get offended by this for this reason, as someone with a qualification in the subject these individuals should be clearly delineated so the subject stops being tarred by their brush.

 

[Eleanor]

Anyone who thinks 'mindfulness' is one of the first priorities in addressing ME/CFS needs their head examined.

 

[Trish]

Sounds like a mix of BACME and generic 'wellness'.

 

[NelliePledge]

That programme is indistinguishable from the PACE lite (oh we don’t do GET anymore) programme I was on literally ten years ago this month.

 

[rvallee]

I wonder if they realise how off-the-scale insulting it is to call it the Living Well Service?

How, checks notes, "hostile, antagonistic or highly emotive" of you.

 

[bobbler]

How, checks notes, "hostile, antagonistic or highly emotive" of you.

it's like having a clinic for people with hearing loss and replacing it with a bunch of AHPs who have never encountered hearing loss claiming that because dancing or listening to music to do relaxation does well people good (also BS because I'm not sure there is evidence there from a makes the health better science perspective but you know) then 'the bastards just don't want to get better' when they won't 'pace-up' their hearing thanks to all these 'kind helps because we have a name badge that most who wear it are called the helpful profession for'.

I'd hope then with that analogy they'd realise it was bigotry and enforcing bigotry on people whilst wasting their time that they were doing.

Those who commissioned this and who are in charge of oversight pretending they cannot read and cannot understand fake evidence in order to deliver such bigotry... I have no words..... they deliver normal, real, health services every day as part of their job so they must know exactly what they are doing when they read the description of a service claiming to be for seriously ill people and it has a JD for a physio to deliver psych telling people their sleep'll get better if they just act more like normal people and behave 'cos it works for well people' ?

They don't even need to wade thru the fillibustering of the probably many many £millions wasted on the bpsers repeating iteratively more un-robust 'research' that have now become unpleasant discriminatory manifestos often because Nice analysis did it for them: such low and very low quality that it should be binned and treated as 'why has someone done this' agenda

How dare they replace it with something even more inappropriate and made up?