UK: NHS RUH - Bath Centre for Fatigue

Sly Saint

Sly Saint

Senior Member (Voting Rights)
About us
We are a national service providing outpatient based specialist services for adults experiencing long-standing fatigue linked to a variety of illnesses. People referred to our service might have Chronic Fatigue linked to a neurological or other long standing condition, such as joint hypermobility syndrome, Myalgic Encephalomyelopathy/Chronic Fatigue Syndrome (ME/CFS) or Cancer Related Fatigue (CRF).

For cancer patients please take a look at our referrals page for eligibility criteria.

The ethos of our service is based on supported self management. This approach enables people to better manage their conditions and regain some control over day to day activities and routines.

Services are provided in a variety of locations in Bath and Wiltshire and via a variety of media including SKYPE where appropriate.

What we offer
Specialist assessment and treatments taliored to your needs. These are based on best practice principles and are delivered by a team of highly skilled health professionals. Interventions are available to support you with everyday activity management including work related needs. We are also able to advise and signpost you to more appropriate services if necessary.
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New private service:
Fatigue Focus
In response to some of our patient feedback, we have now launched a range of private fatigue services, Fatigue Focus, for people with enduring and disruptive fatigue, associated with a variety of long terms conditions such as ME/CFS, living with and beyond cancer or other conditions, such as rheumatoid arthritis. Services are suitable for people whose health is considered medically stable, and need help with coping with troublesome fatigue on a day-to-day basis.

Our private chronic fatigue services will provide patients with strategies to help them self-manage the disruptive impact of fatigue on their daily activities. We are able to provide services either remotely via the internet or telephone or face to face at the RUH site.

Please see below a copy of our Fatigue Focus brochure, detailing the assessment and treatment packages offered, together with a copy of our terms and conditions.



Fatigue Focus - Private Fatigue Services
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https://www.ruh.nhs.uk/rnhrd/patients/services/fatigue_services/index.asp?menu_id=1&RNHRD=y
 
It looks like a service run by occupational therapists. I don't understand the section on a private service. Does this mean it's run separately from the main NHS service and people have to pay, or that it's NHS work outsourced to a private company.
I'm very suspicious of a service that groups pwME with people with other fatiguing conditions and makes no mention of PEM.
 
Bath Centre for Fatigue said:
Group Programme

The Bath Fatigue and Lifestyle Management group Programme is a 4 session, outpatient course, which runs once a week, with a six-month group follow-up review session, and additional 1:1 support, where needed. During the Programme we provide a range of evidence-based strategies to support individuals in the self-management of their fatigue, to regain a sense of control over their day to day lives and activities. We adopt a ‘whole person’ approach to the management of symptoms acknowledging physical, cognitive and emotional fatigue experienced.
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Bath Centre for Fatigue said:
Feedback on the Group Programme Content Patients were asked to report on the helpfulness of the group programme content. The majority of responses were positive (‘very helpful’ or ‘helpful’):  Understanding fatigue – 89%  Activity & energy management – 91%  Managing thoughts & feelings – 81%  Mindfulness – 74%  Values & goals – 88%  Communication – 91%  Activity Rest and Sleep Logs – 77%  Stress & relaxation – 86%
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I think this might be same service as the one that ran at the mineral water hospital in Bath. Maybe they have just migrated across to the RUH.

I attended this group programme well over 10 years ago when I was originally diagnosed and it was terrible. Patronising and useless advice where we were treated like young children. One of the first activities we did was to pick up various cards with pictures of people looking overwhelmed in different ways (eg spinning lots of plates, or sleeping in) and explain how they made us feel.

From the descriptions on their feedback form it doesn't seem like things have changed much. There wasn't any CBT or GET as far as I can remember and I don't recall ever seeing a doctor.

I remember actually the OTs running the group sessions talked about Esther Crawley who ran the youth fatigue service (possibly in the same building?) and who was running a trial on the lightning process. My memory is fuzzy but I seem to recall even the OTs seemed unsure how they felt about that at the time.

edit: @Trish Did you attend this service too? I have some vague memory of reading a post of yours talking about it
 
Just spotted this, which is pediatric CFS from 2019 but I couldn't believe any presentation was claiming recovery stats of 60% recover in 6months and 85% in one year (a clinical psych). It is a presentation from the Bath clinic (scroll to end to see links to Crawley etc and materials from Bath clinic) to an Oxfordshire hospital school (hence the url) which is a bit horrifying given the point in time and some of the feedback from the same clinic (pediatrics?) on the feedback in the link in the next comment.

PowerPoint Presentation (ohs.oxon.sch.uk)
 
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I just found this on MEAction from 2019: Appendix-5-Your-experience-of-ME-services-report-by-MEAction-UK.pdf which has collected feedback about all/any clinics in some sort of survey so worth a look through and can use cntrl+f to search by clinic I guess

I noted one interesting nugget in a comment for this clinic was:
"The clinic is part funded at least by Maximilian Cancer and they also run very similar courses for people recovering from chemotherapy. I think this is totally inappropriate as these patients will have a very good chance if full recovery through pacing whereas with ME/CFS there are no guarantees"


Has anyone checked whether this is still the case for this clinic re: funding?

And are there other fatigue clinics doing this sort of thing funding-wise? hence the generic move to fatigue (although maybe because of this it sounds safer than the pediatric one did back then because I guess you have to be more pacing and gentle when it might be someone who had/has cancer or something other than 'CFS'?)
 
bobbler said:
Just spotted this, which is pediatric CFS from 2019 but I couldn't believe any presentation was claiming recovery stats of 60% recover in 6months and 85% in one year (a clinical psych). It is a presentation from the Bath clinic (scroll to end to see links to Crawley etc and materials from Bath clinic) to an Oxfordshire hospital school (hence the url) which is a bit horrifying given the point in time and some of the feedback from the same clinic (pediatrics?) on the feedback in the link in the next comment.

PowerPoint Presentation (ohs.oxon.sch.uk)
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It strikes me as interesting thar Crawley, increasingly struggling to get subjects for her paediatric ME/CFS research has now started research on ‘newer’ CBT variants with children not cured by the Bath clinic. One wonders at the contradiction between her previous claims of high levels of recovery and her seemingly ready supply of children not helped by her previous interventions.
 
bobbler said:
Just spotted this, which is pediatric CFS from 2019 but I couldn't believe any presentation was claiming recovery stats of 60% recover in 6months and 85% in one year (a clinical psych). It is a presentation from the Bath clinic (scroll to end to see links to Crawley etc and materials from Bath clinic) to an Oxfordshire hospital school (hence the url) which is a bit horrifying given the point in time and some of the feedback from the same clinic (pediatrics?) on the feedback in the link in the next comment.

PowerPoint Presentation (ohs.oxon.sch.uk)
Click to expand...
This is while the MAGENTA trail was still ongoing. It's also the figure quoted to me in the adult Bath clinic in 2011.
 
bobbler said:
I just found this on MEAction from 2019: Appendix-5-Your-experience-of-ME-services-report-by-MEAction-UK.pdf which has collected feedback about all/any clinics in some sort of survey so worth a look through and can use cntrl+f to search by clinic I guess

I noted one interesting nugget in a comment for this clinic was:
"The clinic is part funded at least by Maximilian Cancer and they also run very similar courses for people recovering from chemotherapy. I think this is totally inappropriate as these patients will have a very good chance if full recovery through pacing whereas with ME/CFS there are no guarantees"


Has anyone checked whether this is still the case for this clinic re: funding?

And are there other fatigue clinics doing this sort of thing funding-wise? hence the generic move to fatigue (although maybe because of this it sounds safer than the pediatric one did back then because I guess you have to be more pacing and gentle when it might be someone who had/has cancer or something other than 'CFS'?)
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In Bath between 2011 and 2014 the CFS/ME Clinic that I attended changed it's name to the 'Fatigue Clinic' which Nickie Catchpool explained to me was because they now helped Cancer patients to cope with fatigue and pain. Here's your links Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline (nhshealthatwork.co.uk)

ETA: Just found a slide which shows a basic graph clearly stating activity increased by 10% - 15% per week. Well done, @bobbler the last link in my chain of evidence.
 
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Maat said:
In Bath between 2011 and 2014 the CFS/ME Clinic that I attended changed it's name to the 'Fatigue Clinic' which Nickie Catchpool explained to me was because they now helped Cancer patients to cope with fatigue and pain. Here's your links Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline (nhshealthatwork.co.uk)

ETA: Just found a slide which shows a basic graph clearly stating activity increased by 10% - 15% per week. Well done, @bobbler the last link in my chain of evidence.
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sort of brings things alive in a number of ways realising this. Or a lot of questions that maybe if more clinics are doing similar things is a generic discussion for elsewhere.

1. the funding difference between the conditions / why is it that these clinics are wanting to do this and move into these new larger areas? No idea if this is tail-wag dog on funding vs moves to the generic. And BPS being happy to shift its focus to 'helping to cope' and 'fatigue' claims vs bare psychosomatic?

and of course how CFS might be seen that this is 'it' for the condition vs 'something to offer' or is it pitched as a 'cure' for those who have post-cancer fatigue?

2. remembering that cancer patients are obviously having medical treatment, where this is 'alongside' - yet for CFS they claim this is the treatment OR as per new guidelines 'there is no treatment but we can offer to cope..' like just the rehab them without treating them being very different to fixing the broken leg first. I don't know whether these are people who finished treatment or still undergoing it for cancer but imagining their progression and recovery claims then should be seen as complicated given they surely can't be separated from the other treatment and recovery from that and any illness it has perhaps treated.
 
found this leaflet on the website (April 2024)
Specialist Treatment for Children & Young People with Fatigue
https://www.ruh.nhs.uk/patients/ser...ediatric_cfs_me/leaflets.asp?menu_id=1']Royal United Hospitals Bath (ruh.nhs.uk)
it's a patient information leaflet
Moving from childrens to adult Chronic Fatigue services
Supporting young people with ME/CFS, Chronic Fatigue Linked to Other Conditions or Cancer Related Fatigue

If you are currently 16-19 years of age and being seen in our Paediatric ME/CFS Treatment Service at the RUH, or by The Young Adult cancer services in the region, you may be eligible to transition to our Adult fatigue clinic. This is provided by the Bath Centre for Fatigue Services (BCFS) and is a specialist rehabilitation service led by Consultant Occupational Therapists. We try to put you in charge of how your transition works. Our specialist BCFS team and your existing paediatric team can facilitate a smooth transition to adult services by, for example:  Meeting with you and your family or carer to establish your treatment needs.  Designing a self-management plan to help you cope with the impact of fatigue on your day-to-day life as you move into adulthood.

Included in our Treatment Programmes:  Individual and/or group outpatient sessions as agreed during your transition planning.  The opportunity to meet and learn from others with the same condition.  The opportunity to work with a team that understands your needs.  Working out how much energy you have and how you use it.  Assistance with pacing, planning and prioritising everything you need, want and have to do.  Information on how to improve sleep routines.  Goal setting in daily routines and valued activities.  Exploring how we communicate with others.  Ideas on what to do if you are having a ‘bad day’.  The use of relaxation to address worries.  Helpful tips for remembering things.  General advice on healthy eating.  Support and advice with starting or remaining in work or education. And much more!
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Sly Saint said:
found this leaflet on the website (April 2024)
Specialist Treatment for Children & Young People with Fatigue
https://www.ruh.nhs.uk/patients/ser...ediatric_cfs_me/leaflets.asp?menu_id=1']Royal United Hospitals Bath (ruh.nhs.uk)
it's a patient information leaflet
Moving from childrens to adult Chronic Fatigue services
Click to expand...
If the Bath kid clinic is so very efficacious so throughly rehabilitative how is such a step necessary?

Perhaps this is just a helpful pointer for the odd poor child who turns into a pumpkin two weeks into the rehab program?
 
bobbler said:
sort of brings things alive in a number of ways realising this. Or a lot of questions that maybe if more clinics are doing similar things is a generic discussion for elsewhere.

1. the funding difference between the conditions / why is it that these clinics are wanting to do this and move into these new larger areas? No idea if this is tail-wag dog on funding vs moves to the generic. And BPS being happy to shift its focus to 'helping to cope' and 'fatigue' claims vs bare psychosomatic?

and of course how CFS might be seen that this is 'it' for the condition vs 'something to offer' or is it pitched as a 'cure' for those who have post-cancer fatigue?

2. remembering that cancer patients are obviously having medical treatment, where this is 'alongside' - yet for CFS they claim this is the treatment OR as per new guidelines 'there is no treatment but we can offer to cope..' like just the rehab them without treating them being very different to fixing the broken leg first. I don't know whether these are people who finished treatment or still undergoing it for cancer but imagining their progression and recovery claims then should be seen as complicated given they surely can't be separated from the other treatment and recovery from that and any illness it has perhaps treated.
Click to expand...

And do outcome stats differentiate between conditions, or are all lumped together?
 
Ash said:
If the Bath kid clinic is so very efficacious so throughly rehabilitative how is such a step necessary?

Perhaps this is just a helpful pointer for the odd poor child who turns into a pumpkin two weeks into the rehab program?
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I think there has been a focus throughout both medicine and education on transition stages for post 16/18 year olds - ME/CFS is particularly poorly served as it is an orphan condition with no specialist consultants to transfer care to from paediatrics- so there's a gap in the market

ETA Bath's reach for paediatrics is nationwide -so influence is extensive
 
Amw66 said:
ME/CFS is particularly poorly served as it is an orphan condition with no specialist consultants to transfer care to from paediatrics
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I'm a bit torn on this one. PwME should have access to consultants, but those doctors need training and experience first. Is it better to put ME/CFS inside a specialism now (and risk it being the wrong one when we unpick the pathology) so that they can gain experience of looking after patients? Or is it better to wait?


Amw66 said:
transfer care to from paediatrics
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There are definitely days when I could do with a consultant in adulting. :D
 
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