ME/CFS services in the United Kingdom

They seem to be uniquely incompetent each in their own way.

But basically a free-for-all with no oversight and zero standardization besides the it's-psychological-but-we'll-lie-about-that.

The weird thing is that it's happening amidst politics of austerity. So while there are huge efforts going on to cut services as much as possible, money is being wasted blindly and specifically on being more harmful than simply providing nothing. Now that's some serious dedication.
 
It is important to understand how CFS / ME affects these aspects of your life (not just the physical symptoms) in order to help you improve the quality of your life.
Click to expand...
How disingenuous.... presenting it as that way around...…. it's only when you get properly in their clutches that you'll find out they really mean how these areas of your life affect (cause) the CFS/ME symptoms.... not the other way around.
 
Another ad for physio job at Royal free;
http://jobs.royalfree.nhs.uk/job/UK...on_Trust/Physiotherapy/Physiotherapy-v2006560

Job description:
GET Specialist Physiotherapist / Exercise Physiologist, The Fatigue Service
To provide the highest quality specialist Graded Exercise Therapy service to clients of the Fatigue Service team, and if appropriate across all sectors of care. Practice will include assessment and treatment of patients with fatigue syndromes who may have complex and/or chronic presentations with associated co-morbidities; Graded Exercise Therapy delivery in both individual format and group therapy; provision of advice and consultation on clients’ care to multidisciplinary colleagues and other non professional carers; to work autonomously within professional guidelines and the overall framework of the team’s policies and procedures. To undertake research for audit, policy, service development, and research within the area served by the Fatigue team/service
Click to expand...

To be responsible for implementing a range of physiotherapeutic interventions, specifically Graded Exercise Therapy (GET) for individuals with fatigue syndromes, carers, families and groups, within and across teams employed individually and in synthesis.
Click to expand...

@PhysiosforME
 
Practice will include assessment and treatment of patients with fatigue syndromes who may have complex and/or chronic presentations with associated co-morbidities
Click to expand...
Assessment of medical presentations and co-morbidities is not at all the remit of a physical therapist. This is a clown show. If the clown was Pennywise.
 
Well it’s complicated by the introduction of IAPT and different arrangements in different parts of the country there is still a service that’s supposed to cover CFS in my area but it’s part of the community pain service and the CFS clinic was closed about 18 months ago but was still doing “courses” for people on the waiting list for a few months. Must be difficult for GPs to keep up with reorganisations.
 
InitialConditions said:
I'd have thought they would have a system that directs the referral. Then again, this is the NHS and that would be far too easy!
Click to expand...
They should be able to look on up 'E-referral' which services are 'routinely commissioned' by your local CCG (Clinical Commissioning Group). The software should also highlight to them the criteria a patient needs to have met to be eligible for referral.

You can also enquire directly to your CCG about which (if any) CFS/ME services they commission.
 
Trish said:
Maybe your GP's practice have a policy of not referring to that clinic - to save money or because feedback from patients tells them it's useless.
Click to expand...

I don't think that's the case. My GP would have been honest. I think it's because the provision has recently been changed. They like to pass the ME/CFS services around and regroup them etc. It drives me nuts, and yes, probably the GPs too.
 
Last edited:
This is my local service now

https://www.lscft.nhs.uk/clmw-cfsme.
"The CFS/ME Service aims to provide supportive, holistic patient centred advice to aid acceptance, education and self-management for adults with mild or moderate CFS/ME in Lancashire."

It's been grouped, along with physio and rheumatology services, under a new banner - Central Lancashire Moving Well: https://www.lscft.nhs.uk/central-lancashire-moving-well
"This service is available for people who are registered with a GP Practice in Greater Preston, Chorley or South Ribble."

Not living in one of those areas, I am totally unsure whether I can be referred to the ME/CFS clinic. Why can't things be simple!
 
Last edited:
There is a list of all the NHS 'specialist' CFS services on the MEA main website.

Trish said:
or because feedback from patients tells them it's useless.
Click to expand...
gosh... wouldn't that be marvellous! if they stopped referring people because patients said they werent happy with it & it didn't help, instead of blaming the patients.

Edited - noticed the word 'because' was missing.
 
Last edited:
InitialConditions said:
This is my local service now

https://www.lscft.nhs.uk/clmw-cfsme.
"The CFS/ME Service aims to provide supportive, holistic patient centred advice to aid acceptance, education and self-management for adults with mild or moderate CFS/ME in Lancashire."

It's been grouped, along with physio and rheumatology services, under a new banner - Central Lancashire Moving Well: https://www.lscft.nhs.uk/central-lancashire-moving-well
"This service is available for people who are registered with a GP Practice in Greater Preston, Chorley or South Ribble."

Not living in one of those areas, I am totally unsure whether I can be referred to the ME/CFS clinic. Why can't thinks be simple!
Click to expand...

Regardless of what these services write on their websites (which often incorrectly says that the patient needs to live in a specific area), if your CCG commissions specialist ME/CFS services (that is a similar type of service), you have the right to choose where you are referred (anywhere in England, providing that the service has a contract with at least one NHS commissioning body). This is a legal right in England and applies to both physical and mental health services. However, it does depend on the type of services your CCG 'routinely commissions', so you may need to ask them what this is for CFS/ME.

See:

https://www.nhs.uk/NHSEngland/patient-choice/Documents/patient-choice-leaflet.pdf

https://www.nhsconfed.org/resources...ght-to-choose-where-you-receive-nhs-treatment

https://www.gov.uk/government/publi...k-what-choices-are-available-to-me-in-the-nhs
 
Last edited:
I just rang the number on the page. Not recognised.

I then rang a different number—the one for 'Central Lancashire Moving Well'—and was told the ME/CFS service was indeed only for those registered with a GP in certain areas. Certainly not a 'Lancashire' ME/CFS service. Therefore, there is no local service for me.
 
Can I ask, @InitialConditions, why anyone would want to access a local ME service in the UK, given that we know there is nothing they can tell us that is helpful, and the staff are likely to be 'therapists' not specialist doctors.

The only 'value' I can see in current UK services is to tick the box on benefit applications saying you've been diagnosed by a specialist clinic, and have done whatever (useless) treatment they offer.
 
Trish said:
Can I ask, @InitialConditions, why anyone would want to access a local ME service in the UK, given that we know there is nothing they can tell us that is helpful, and the staff are likely to be 'therapists' not specialist doctors.

The only 'value' I can see in current UK services is to tick the box on benefit applications saying you've been diagnosed by a specialist clinic, and have done whatever (useless) treatment they offer.
Click to expand...

I may have gone to this combined service because they have physio and MSK teams which could have been useful. But the main reason is indeed the benefits issue. I guess I can say I asked my GP to refer me but the service has closed!
 
You must log in or register to reply here.
Back
Top Bottom