ME/CFS services in the United Kingdom

New ME/CFS clinic opens in Aylsham

A new clinic has opened in Aylsham offering advice and support to people with ME/CFS, also known as chronic fatigue syndrome.

The service has been commissioned by NHS Great Yarmouth and Waveney Clinical Commissioning Group and will be run by East Coast Community Healthcare (ECCH). It will be based at Aylsham Care Trust Centre in St Michael’s Avenue and will operate every Thursday and Friday from 9am to 4pm.

The clinics will offer face to face appointments with an occupational therapist, as well as advice and support via email, telephone and, in a small number of cases, home visits.

The symptoms of ME/CFS typically include a feeling of unusual and excessive tiredness that is characteristically made much worse after any activity. The fatigue is usually both physical and mental. Other symptoms can include un-refreshing sleep, swollen lymph glands, headaches, muscle and joint pain.

People can to be referred to the service by their GP. Patients aged under 16 must also be under the care of a paediatrician.

ECCH Director of Operations Adele Madin said: “We are delighted to be able to provide a new service in the Aylsham area to support people with this debilitating condition. It means we can offer people in the north Norfolk area a service closer to their homes and work with them to find strategies that will help them achieve improvement in their condition and establish and maintain a better quality of life.”

Cath Byford, Lead Director for Great Yarmouth and Waveney CCG said: “the additional service will improve access for patients who will be able to attend a clinic in a location more convenient for them,”

ECCH now runs four ME/CFS clinics across Norfolk in Kings Lynn, Norwich, Great Yarmouth and Aylsham.
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https://www.ecch.org/news/posts/2019/may/new-mecfs-clinic-opens-in-aylsham/

don't know any more.
anyone have any experience of this or their other clinics?
 
@Sly Saint the clinic is part of the therapy led Norfolk and Suffolk Service...They had been criticized for not offering geographical coverage in North Norfolk, hence Aylesham.

There is very little to say that is good about the Provider ECCH, or indeed about Gt Yarmouth and Waveney CCG.

Repeated complaints from patients and Patient / Carer Group about the service have gone unaddressed in Norfolk and Waveney. Suffolk CCG's, to their credit are continuing to engage with service users.
 
I am collating patient experiences of East Coast CH and will post any feedback from the "new" clinic which provides better access, not better services for those in North Norfolk.
I have been collating info on the service limitations and insufficiency which we will use to issue a formal joint group's complaint about poor service provision in Norfolk and Waveney.
  • "... they follow NICE but only do pacing. However there are issues with the service. They are considering reintroducing cbt, there is no consultant and no biomedical testing for comorbidities etc. Access remains impossible for the most severe cases who are house and bedbound as there are no home visits. This move doesn't form a substantial improvement...."

  • " ......with service specification, which is historic going back to about 2008. ECCH stated at the Health Overview meeting that CBT GET do nor form part of the spec for the service. That was ruled out on 2008 when we appraised NICE and it was rejected by us patients /carer representatives and that decision was accepted by the commissioners who were developing the service contract.. They cover children and have a physio who co ordinates for them. The OT Physio espe and most senior practitioners are decent and supportive though limited in resource. I have had a long working relationship with them over 15 years as a rep. They have been very helpful over time. It's the ECCH most senior Management and Waveney who are the real problem..."
 
I’m hearing that people in my area are being offered GET through the reorganised NHS Service which is community based alongside pain service as opposed to previous hospital based (no doctor involved) service which had moved to a PACE lite management programme approach. Seems the reorganisation has been a retrograde step.

ETA flagging to @adambeyoncelowe and @Keela Too for info

ETA 2 I understand the offering of GET is being done in quite a pushy way
 
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"Cambridgeshire Community Services
New CFS/ME booklet for GPs
CPFTs Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) service has updated its GP booklet – a guide to the diagnosis and management of CFS/ME in primary care. The team has also produced a poster for GP surgeries and waiting rooms. Aimed at both GPs and patients, the it highlights symptoms, how to refer, and a web link for self-help resource."

https://www.cambridgeshireandpeterb...-resources/latest-news/gp-news-2-august-2019/

separate link to GP booklet:
https://www.cpft.nhs.uk/Documents/CFS ME/GP booklet Apr 2019.pdf

Monitoring Outcomes of Therapy
The team use a variety of patient and therapist reported outcome measures with the
aim of demonstrating the effectiveness of the interventions we provide. In particular,
that patients report improvements in their ability to manage and cope with their
condition and have the tools they need to continue for the future.
We discuss and compare measures with the patient and use them to report changes
and outcomes to GP’s.
Further information and all the self-help material used by the service can be found on
our webpage.
http://www.cpft.nhs.uk/services/chronic-fatigue-syndrome-and-myalgic-
encephalomyelitis.htm
Click to expand...

As we wish to improve our service, we would appreciate your comments.
We are happy to receive your feedback about this booklet, or for further
information about our services, contact us at:
CFS/ME Service
Location:
Botolph Bridge Health Centre
Sugar Way
Woodston
Peterborough PE2 9QB
Email:
cpm-tr.cfsme@nhs.net
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may be of interest to @PhysiosforME

eta: haven't checked in detail to see what has changed
 
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Somerset Partnership NHS
Job advert
Specialist Practitioner - Chronic Fatigue Syndrome
NHS AfC: Band 7
We are looking for someone to lead this small countywide service to support clients with mild to moderate Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
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The service is going through a period of development. Are you passionate about improving the lives of individuals? We are looking for an enthusiastic, creative, motivated and adaptable clinician - physiotherapist/occupational therapist of psychologist to join and lead this team.
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The primary purpose of the role is deliver a highly specialist clinical service for patients diagnosed with CFS/ME across Somerset and to use a CBT approach to treatment and management of the condition. The service will be developing as the alliance moves forward, so this is a great opportunity to assist with creating a service fit for the future.
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https://www.nhsjobs.com/job/UK/Some..._specialist_interest_Chronic_Fatique-v1900072
 
Sly Saint said:
"Cambridgeshire Community Services
New CFS/ME booklet for GPs
CPFTs Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) service has updated its GP booklet – a guide to the diagnosis and management of CFS/ME in primary care. The team has also produced a poster for GP surgeries and waiting rooms. Aimed at both GPs and patients, the it highlights symptoms, how to refer, and a web link for self-help resource."

https://www.cambridgeshireandpeterb...-resources/latest-news/gp-news-2-august-2019/

separate link to GP booklet:
https://www.cpft.nhs.uk/Documents/CFS ME/GP booklet Apr 2019.pdf





may be of interest to @PhysiosforME
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Thank you for sharing this
 
NelliePledge said:
Ugh -Cambridgshire materials- fatigue that cannot be explained by an underlying medical condition
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I'm still not quite sure how much this concept differs from humours. It does, kinda, just so very little. It just uses different names like anxiety and trauma but otherwise it's quite frankly even less scientific given how thoroughly it has been falsified by now.

Like... blood I guess can be seen as the initial infection they pretend to take into account. Phlegm is clearly fatigue. Yellow bile is anxiety. Black bile is depression or trauma. How does the BPS crap seriously differ from that? 1% 5%? At best. If you squint. And hold your breath to starve it of oxygen.

You know, I think I'll refer to the BPS model as the humours from now on. It might as well be the same thing with just enough hand-waving to pretend it isn't.
 
Sly Saint said:
"Cambridgeshire Community Services
New CFS/ME booklet for GPs
CPFTs Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) service has updated its GP booklet – a guide to the diagnosis and management of CFS/ME in primary care. The team has also produced a poster for GP surgeries and waiting rooms. Aimed at both GPs and patients, the it highlights symptoms, how to refer, and a web link for self-help resource."

https://www.cambridgeshireandpeterb...-resources/latest-news/gp-news-2-august-2019/

separate link to GP booklet:
https://www.cpft.nhs.uk/Documents/CFS ME/GP booklet Apr 2019.pdf





may be of interest to @PhysiosforME
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Actually, I found the booklet quite 'neutral and uncontroversial!
It is better than I was expecting.....
 
Suffolkres said:
Actually, I found the booklet quite 'neutral and uncontroversial!
It is better than I was expecting.....
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They are recommending graded activity, goal setting and exercise as management strategies for ME/CFS.

Management of CFS/ME is predominantly based on a therapeutic approach with advice on self-management techniques, including
 Activity management (pacing and grading activity)
 Relaxation and rest
 Sleep and diet advice
 Exercise
 Support with employment
 Engagement in meaningful occupation
 Goal setting
 Coping with setbacks
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So the booklet does not seem all that neutral or uncontroversial to me...?
 
Snowflake said:
They are recommending graded activity, goal setting and exercise as management strategies for ME/CFS.



So the booklet does not seem all that neutral or uncontroversial to me...?
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The use of setback alone is completely inappropriate. It's not a valid term in this context outside of the ideological framing of "there is no disease, you can aim for full recovery" and deterioration, even if permanent and severe, is just a bump on the road to progress that is guaranteed if you just believe in it.

Goal setting is very charged as well. Creates a false emphasis on motivation, as if it played a role. Is "not projectile vomiting" a goal to someone suffering from food poisoning?

Rejecting reality and substituting their own, as is tradition.
 
Sly Saint said:
Salford Royal (NHS)
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Chronic Fatigue Syndrome (CFS)/
Myalgic Encephalopathy (ME)
Management Programme

Some predisposing factors including stress,
lifestyle, personality (e.g. high achievers)
may make it more likely someone will
develop CFS/ME when coupled with a
trigger such as a virus, a traumatic event,
surgery or a vaccination. Factors such
as stress, poor sleep, overexertion and
deconditioning can then work to maintain
the symptoms of CFS/ME
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Home practice reminder:

If it’s hard to relax or enjoy things try to “fake it ‘til you make
it”
Tell a joke to someone (and if you have an appropriate joke
we’ll proof it & tell it to group if you like).
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joke?

http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=43129&type=full&servicetype=Inline
 
Sly Saint said:
"Cambridgeshire Community Services
New CFS/ME booklet for GPs
CPFTs Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) service has updated its GP booklet – a guide to the diagnosis and management of CFS/ME in primary care. The team has also produced a poster for GP surgeries and waiting rooms. Aimed at both GPs and patients, the it highlights symptoms, how to refer, and a web link for self-help resource."

https://www.cambridgeshireandpeterb...-resources/latest-news/gp-news-2-august-2019/

separate link to GP booklet:
https://www.cpft.nhs.uk/Documents/CFS ME/GP booklet Apr 2019.pdf
Click to expand...
Self Help Information for Patients
U
nderstanding CFS /
ME:
The Biopsychosocial Model
‘
Biopsychosocial’ is a term we use to understand the various factors that affect
people with CFS / ME.
Using this term does not mean we believe your illness is psychological,
as many health conditions influence us in all three areas.
As you will have experienced, CFS/ ME causes many different symptoms and influences
many different parts of your life.
For example when you have CFS / ME you are:

Physically unwell and have several biological symptoms
–
fatigue and pain.

You may feel less like your normal self and this can lead to feelings of unhappiness, frustration,
confusion, anger etc.–psychological
.

You may not feel able to see friends as much–social
.
Whatever is happening to your body physically (e.g. fatigue, pain, dizziness) is also having a kno
ck on effect psychologically (changes in the way you feel and behave) and
socially (changes in activity, working life, and seeing friends). It is important to
understand how CFS / ME affects these aspects of your life (not just the physical symptoms) in or
der to help you improve the quality of your life.
Click to expand...
An example of CFS / ME:
A hard working 30 year old woman is doing well, working hard, exercising and
socialising. She gets a viral infection around the time she is promoted
and feels under pressure to take only one day off before returning to work. She is working hard
and more so because she is not 100% healthy.
She is able to ‘push on’ by stopping her regular exercise and social outings so she can rest and sleep more when not at work. She starts losing health and fitness even becomes physically more vulnerable, feels miserable and her work is even harder–
we call this a boom and bust cycle......
Click to expand...
https://www.cpft.nhs.uk/PDF/Miscellaneous/Patient Self Help Information Booklet May 2017.pdf
 
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