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.

 

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

@PhysiosforME

 

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.

 

I cannot click to like this message!

 

Does such a list exist, anywhere? I want to understand how patchy the system is for us.

Thanks in advance.

edit: have found a list here: https://www.meassociation.org.uk/nhsspecialistservices/

Not sure how accurate it is.

 

It's strange. I asked my GP about the service I would be referred to, having had an idea already, and he came back saying one didn't exist. I now see this service is still going. Wonder why/how he missed it...

 

Often GPs don't know. The clinics aren't always well advertised.

 

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!

 

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.

 

More info on the NHS e-referral system can be found here:

https://digital.nhs.uk/services/e-r...on-the-use-of-the-nhs-e-referral-service-2018

 

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.

 

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!

 

There is a list of all the NHS 'specialist' CFS services on the MEA main website.

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.

 

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

 

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.

 

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!