United Kingdom: Bedfordshire Chronic Fatigue Service

[Barry]

Moved posts
ME Association - "Bedfordshire Chronic Fatigue Service and the new NICE guideline – feedback required"

https://meassociation.org.uk/2021/1...and-the-new-nice-guideline-feedback-required/

Reporting about this sly bit of rebranding:

https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service

For those who do not receive a diagnosis of chronic fatigue syndrome, the team will we offer advice and signpost to more appropriate services. This service offers NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management

The new guideline makes no mention of anything called GAM nor Graded Activity Management, but this ambiguous statement, "NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management" slyly tries to make it seem like it does; they would of course try to argue that it really means "NICE recommended Cognitive Behaviour Therapy (CBT), and also our own Graded Activity Management". But these people cannot be allowed to get away with this, because they know full well how people really interpret such ambiguities.

If they really do intend to stick faithfully to the new guideline, then why try to dress it up.

And also there seems to be a sly hint to medics to not diagnose people with CFS. And in any case, what about those whose time criterion has not yet been met.

ETA: Realise I misread/misunderstood the bit about those not diagnosed with CFS; was thinking it was saying this service was not being offered to them. But it is actually the complete opposite - it is being specifically offered to them. So I struck through the bit of my post regarding that.

 

[Simbindi]

This is the information I received from the Bedford clinic when I made some inquiries about their service in August this year (before the NICE guideline pause was announced). [I have left in their grammar mistakes]

Service history:

· How long has there been a specialist CFS/ME clinic serving the Bedford area?

The service was set up in 2013, for Bedfordshire patients.


· Have there been any significant changes to the services since it was originally set up (i.e., changing from being a CFS/ME service to a general fatigue or fatigue and pain clinic) since that time?

Yes, we have recently in 2021 developed a Post Covid Fatigue Service.


Current practice:

· Can you provide diagnostic services for a patient whose symptoms are severe and make them housebound?

We are commissioned to support patients with mild to moderate fatigue. There is an inpatient service for patients with severe fatigue and persistent physical symptoms in London (South London and Maudsley NHS Trust).

· Do you do home visits for severely affected patients?

No

· Is the diagnosis of CFS or CFS/ME given by a qualified consultant level doctor or a specialist GP? If not, what are the medical qualifications of the diagnostician?

No, our service provides a comprehensive assessment Multidisciplinary Assessment (Occupational Therapy, Psychology, and Physiotherapy) that either supports or does not support the GP to make a formal CFS diagnosis. From our assessment there may recommendations for other medical conditions that may require investigation and be ruled out by the GP before a diagnosis can be made.

· What blood or other tests do you ask the GP to have completed prior to referral? Please provide a comprehensive list.

Please see our attached referral form with information on bloods and referral criteria.


· What treatments do you offer after a patient has been diagnosed with ME/CFS with PEM (not idiopathic fatigue, without post-exertional malaise as a defining symptom)?

We offer an individually tailored graded activity approach, and we offer CBT to cope with fatigue.

· Is there any post diagnostic support for housebound patients, particularly those unable to manage phone calls?

We refer to the local community OT service via our single point of access (e.g. if adjustments needed in the home with equipment etc). At times this has meant additional support has been commissioned via an adult social worker for people with specific needs with activities of daily living (e.g. help with shopping). This kind of help is been limited and available when people are at risk of falls / have difficulty with mobility within the home.

The CFs Service offers face to face clinic appointments for those who have specific needs and are unable to speak on the phone. We are also offering video consultation.


· How long does a patient remain with your service after diagnosis before they are discharged back to their GP (maximum in months and years)?

Patients tend to be with us for approximately one year in total. We offer 12 sessions of multidisciplinary treatment, then a 3 and 6 month follow up before discharge back to the GP.


· Do you provide a long term care plan with regular reviews or provide guidance for a GP to do this after the patient is discharged back to them?

Patients are seen for 2 review appointments (3 and 6 months after the active 12 session treatment phase). At Discharge, a treatment summary is provided with recommendations for patient / GP regarding further care.

See attached docs.

 

[Sly Saint]

Bedfordshire also have a 'Chronic fatigue' service

Bedfordshire Chronic Fatigue Service
We help clients to understand and manage their symptoms so that they can have a better quality of life and engage in activities which are most meaningful to them.

For those who do not receive a diagnosis of chronic fatigue syndrome, the team will offer advice and signpost to more appropriate services.

This service offers NICE recommended management approaches including specialist physiotherapy, occupational therapy (OT) and psychology

the information on the website was very problematic before and raised with the MEA see
https://meassociation.org.uk/2021/1...and-the-new-nice-guideline-feedback-required/

I don't know what the feedback was, but, given that there is now no information at all, and no mention of ME or ME/cfs doesn't inspire confidence.

I think that calling the clinics 'Chronic fatigue clinics' is very unhelpful,to put it mildly, and wish something could be done about it.

 

[bobbler]

This is the information I received from the Bedford clinic when I made some inquiries about their service in August this year (before the NICE guideline pause was announced). [I have left in their grammar mistakes]



See attached docs.

I've just come across this one whilst looking for something else and am shocked and disappointed. It seems the public-facing page is more circumspect but when you click thru to the referral page: https://gpextranet.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service

Our team consists of:

• Physiotherapists
• Occupational Therapist
• CBT Therapist
• Clinical Psychologist
• Assistant Psychologist

In addition, we can offer advice and liaison for work and study difficulties.

Treatment sessions are offered at 2 locations Dunstable and Bedford. We offer up to 12 fortnightly 50 minute sessions. Clients need to be able to get to appointments, although we are flexible and can provide some sessions via telephone and video calls.

Note the continued use of the term 'client' which I think should be a give-away of not being positioned to really help medically + of course the funding situation, and it not being 'we take responsibility for patient health outcomes long-term' vs we've been paid for delivery of x sessions, whatever the intention of it.

If it has been this long and you won't update the name to treat the condition you've been paid to treat then there should be nearing a point where those who can't/won't comply are just sacked. Including those who say its OK because they don't treat those with PEM (King's response I think) being closed down and proper interventions ensuring noone gets sent through their referral pathway without big flags requiring PEM to be tested for etc.

it seems rather clear they are just tweaking the names and have loaded up on what looks like a large number of expensive staff to shove people through intensive courses over short time periods when the illness doesn't change and shove them out the door within the year still - as it is still 12 weeks + follow-up maybe at 3-6mnths which seems utterly closed-eared one-way assuming it would be 'to help the patient with their coping/questions' rather than see err you know whether their GAM has made them worse yet.

I'm sorry but with the guideline change and what has followed from so many people - which to me just looks churlish/childish, combined with what has seemed like boom-time for people advertising to hire new posts in BPS whilst having claimed they couldn't comply with a proper guideline with medics 'in case staff fear for job losses' and this stuff combined with the BACME survey. And the people currently so poorly in hospital


I mean if it was in an organisation I'm familiar with this would be seen as 'not OK' (understatement). Some would use the term insubordination, but that would require the management to be on-board with delivery. The GAM thing, despite the guideline being corrected to make it so clear that nonsense game-playing would not be overlooked is outrageous and should be enough to sack places. Who'd want to be 'treated' by people with no knowledge and that attitude - I guess that's why we've got lumbered with them.

I note they send their severe patients off to SLAM - ie Chalder, King's and the Maudsley isn't that? WHo've chosen a similar approach to changing things. Is the connection here more than 'just' referring severe patients there (through what - the Bedfordshire ICB and who made that decision?)


And their list of tests is just BPS all over assuming you rule out the obvious with common bloods before referral.

But is said clinic positioned for anyone clinical to look at them or anything or any symptom changes? And yet the GP I assume will feel 'they are the experts'. So what on earth are they doing advising what the tests are? If they aren't qualified? Just seems like theatre.

EDITED to cut down