ME/CFS services in the United Kingdom

As I have posted before, Meet in private and have no minutes, just a report to Companies House.....see ours........ Norfolk & waveny CCGs (5)


Many are CIC a staff-owned social enterprise, providing community-based NHS healthcare services.

• have contracts with the NHS and two county councils.
• At least 70,000 people are registered as service users with ECCH.
• East Coast Community Healthcare is a staff owned social enterprise that uses its surplus resources to benefit local communities.

https://www.socialenterprise.org.uk/what-is-it-all-about/

Social Enterprises in Depth
Our State of Social Enterprise Report is the most comprehensive research undertaken into the state of the sector. Our latest survey published in 2021 shows that in spite of the challenges of the pandemic, social enterprises are delivering economically, environmentally and socially. They are reducing inequalities, opening up opportunities and committed to addressing the climate emergency. Here are some of the key findings:

Definition
In the UK the accepted Government-backed definition of social enterprise used by the UK social enterprise sector bodies such as Social Enterprise UK and Social Enterprise Mark CIC comes from the 2002 Department of Trade and Industry report 'Social Enterprise: a strategy for success' report as:[68]


A business with primarily social objectives whose surpluses are principally reinvested for that purpose.


The original concept of social enterprise was first developed by Freer Spreckley in 1978, and later included in a publication called Social Audit: A Management Tool for Co-operative Working published in 1981 by Beechwood College. In the original publication the term social enterprise was developed to describe an organisation that uses Social Audit. Freer went on to describe a social enterprise as:[69]


An enterprise that is owned by those who work in it and/or reside in a given locality, is governed by registered social as well as commercial aims and objectives and run co-operatively may be termed a social enterprise. Traditionally, 'capital hires labour' with the overriding emphasis on making a 'profit' over and above any benefit either to the business itself or the workforce. Contrasted to this is the social enterprise where 'labour hires capital' with the emphasis on social, environmental and financial benefit.

 

It is a long established Government target to increase the amount of 'contracted out' NHS services and the whole thing has been bureaucratised to make it a standard part of how the NHS operates -
Private companies’ involvement in the NHS . With over £2bn (2015 !) in health contracts going to the private sector each year, the big global health operations have become involved and US health care giants have been particularly evident.

As this is Government policy it's difficult to see any ME/CFS advocacy having much leverage in 'who' gets the contract. Shaping the contract is a different issue.

A weakness in the Government's approach is that contracts are expensive to set up and notoriously difficult and/or painfully expensive to change once they have been awarded which results in frequent inertia leading to unsuitable contracts continuing, re-awarding existing contracts as stop gaps, and grafting on of additional services to an existing contract. It's been a long unfolding nightmare but it's politically endorsed so there's little opportunity to make service by service changes.

 

I know this is probably an obvious question, but how can the NHS call their services
'specialist' ME/CFS services and then actually be treating fatigue or 'chronic fatigue' (for which there are no guidelines so any 'evidence based' treatment is questionable).

the guideline says:

this needs to be the key thing to get across, not 'extreme tiredness'.

 

The picture I've picked up on from this - being ME-specific here is that it is the most ill that get told 'nothing for you' and the least that can access the services. And we all know that most once they realise what is on offer realise it will overall (inc travel) make them more ill as there is more con from travel than there is any pro. That isn't medical care. Or care. It's politics.

And the idea that people are listening to groups who have run clinics tilting towards this for so long claiming 'experience' when actually everything about their clnics say they couldn't have a clue of ME from that, only the mildest of patients and people with something else frustrates me so much. They don't even do proper follow-up like a medical condition to be able to say how people progress between stages and severities - because they are deluded it is 'curable'.

Imagine any other serious condition allowing NHS services to filter out people based on being too ill, as most diseases I know focus most on making sure the most ill are kept watch over - even if there is no treatment. And we've not screeched about it because we are just relieved because the 'therapy' is so dangerous people are just relieved not to get hounded into it when they are more severe.

 

Can they in the interim change the patient cohort?

And yes they need to work out how to get out of these things if there are renewal assumptions etc. and no changes in treatment are possible

The only people these services seem safe for are those who don't have any health condition as far as I can see from the evidence-base. They seem to have really been something sprung up on this religious assumption by some in the health service that if only people exercised more and lived better the bill would be lower. And that rather than poverty influencing stress, there must be a way these people can think better - sadly people forget these are the assumptions of people who have more fortunate backgrounds.

Cost-wise the only thing I could suggest is they close IAPTs immediately - given the huge cost with that. The LTC arm of that should never have been started and I exclude that. And if they have contracts to wind down here look at where they can pick up some of those services for those who would actually benefit from clinics vs phonelines. But it needs to be optional and probably looking at the liability v closely - as if you've no medics then really they need to be honest with GPs on medical clearance and safety if they aren't really covering that or doing a double-check.

I'll bet any smart private company has made sure the liability sits with the NHS/CCG?

I just cannot see how what is being offered by either is either medical care, therapy or safe enough even if it was neither to be doing what they offer to those who are or may be ill. Just because a programme is rigid rather than adapted to the individual's needs (like old physio) doesn't make it any more 'covered' - certainly when there are no checks of people from anyone who is enabled to do so?

 

EXactly - remove ME (and any claims to guidelines and research not being debunked) and they really have nothing. It's just an exercise and think better house to send 'whoever' to that doesn't check what people have when they enter or monitor the safety or health of those once there.

There is no literature even if they did have some generic 'fatigue' or 'chronic fatigue' to justify it, but they do not even do any verified process of checking what people have anyway - I guess lots are sent there just because it doesn't have a closed list. ie supply leading to it being somewhere you can send people to. Tail-wags-dog once there I guess: we treat you with x so you must have y? Do GPs know that the diagnosis isn't refined or checked once they are there?

I know there are pathways so people are following rules, but then separately there is the liability-side surely and does giving people a flow chart actually cover this?

 

job ad

Royal Cornwall Hospitals
Specialist Occupational Therapist

https://www.nhsjobs.com/job/UK/Corn..._TherapistAllied_Health_Professional-v4384654

CFS/ME, 'fatigue as main presentation'....... doesn't sound very 'specialist' to me.

This post has been copied and following discussion moved to
Cornwall ME/CFS services

 

Hertfordshire Community NHS Trust

job ad
Clinical Specialist Occupational Therapist

https://www.nhsjobs.com/job/UK/Hert...etal_CFS_Persistent_Pain_Covid_Rehab-v4390728

 

"ACTIVATE adopts a primarily hands off approach to treatment aimed at motivating and educating service users to manage their condition more effectively and utilises both individual and group-based interventions"

There isn't an emoticon for my shock at this. I can't think of anything more counterintuitive to what ME is. choosing the word activate for goodness sake. Motivate should be banned - that's what made people more ill in the first place - and is just a slur as it has never been proven as anything to do with ME.

How on earth do we start requiring people to understand how damn rude their phrases and attitudes are to people who have probably been tenaciously struggling on doing more than they have whilst being large % disabled compared to them. Talk about how to insult and denigrate people, it has to stop with the attitude. It revolts me.

Oozing arrogant presumption that something is a minimised motivational issue they as people who have no idea what the condition is can cajole someone into self-managing. Is that not really the very definition of ME-bigotry (we need a term specific to it, because it isn't just ablism or any of the generic terms)? And this is what they are marketing themselves of so clearly think it is good. Which makes me think you can't get much more far off what the condition is and needs.

 

this has been removed from the website but who knows if its still used for their group therapy?

the website as a whole has been 'updated' apparently.

but
Chalder is still recommended reading
https://www.southtees.nhs.uk/servic...hronic-fatigue-syndrome-me/patient-resources/

but there is at least a link to the new guidelines under Information for GPs. So why not under patient info?

 

MEA
Update: The ‘Recovery College’ withdraws outdated information on ME/CFS
August 3, 2022
https://meassociation.org.uk/2022/0...rewrite-of-their-online-educational-material/

glad to see this bit:

now if only the main NHS site could be put right............
______________

This post has been copied and following discussion moved to a new thread here:
UK NHS Recovery College information on ME/CFS

 

Whilst progressing our Suffolk ME Service under new ICS System- we have this which is by way of the new way forward across 42 new NHS Alliances ICS....– Everything you wanted to know but were afraid to ask Jun 1, 2022

https://www.youtube.com/watch?v=Sqaq1YvihCw

'Like may of the public/VS, I am struggling to understand and to ‘navigate’ the new ICS.

I came across you Utube presentation you gave at Suffolk - Community Centre in June 2022.

KESGRAVE WAR MEMORIAL COMMUNITY CENTRE Integrated Care Systems

– Everything you wanted to know but were afraid to ask Jun 1, 2022

We have found it to be very helpful and informative and wondered if we could be sent the slides on offer at the meeting?

Our severely affected patient rep, has transcribed the talk, as she felt it to be more accessible this way and also felt it would be important to be able to disseminate it.

We patients/carers reps are preparing for a meeting with ICS Medical Director Andrew Kelso on the 16th August at 2pm at Endeavour House. Also in attendance will be Deputy Contract Manager and Transformation manager with who we have been working for some time.

 

As we await news of the Savid Javid Professor Lucy Chappell DHSC ME/CFS Delivery Planning mechanisms and final implementation,

I revisited DwME June 2022 statement information and cut an pasted parts which I found useful and had a resonance regarding, our current local service practice and likely new service delivery concerns;


Locally, as we are underway with exploratory Pathways of the changes which will be required under NICE CG206 and NICE compliance, we have had the burden of another new legislatory structural change within the NHS triggered by a new April 2022 Act of Parliament under the steer of NHS England and NHS Improvements.

So I ask the question;how will the new ICS System interface with the DHSC ME/CFS Delivery Planning mechanisms and final implementation?????
Where is there evidence of new monies & Funding to marry the above?

Of the New DHSC ME/CFS Delivery Planning mechanisms and final implementation with working group investigations and final report, DwME say;

Ensuring that the Working Groups consider 'every ME problem and solution....'

'Working Groups must be decisively required to take a regulatory compliance approach to resolve these limits.

Merely documenting needs, mandating staff training and hoping for behavioural change will not suffice.

Stopping 'Normalised Medical Rule '.......

Succeeding at scale will require specific and enforceable behavioural change that addresses normalised rule breaking in this field.'

Suggested framework will:

• empower all ME patients with specific rights that are immediately applicable to disease realities, which will particularly benefit severely/very severely affected patients in high pressure situations
• empower organisations to use existing management mechanisms to meet their existing obligations, addressing unusually prevalent risks, regulatory failure, regulatory capture and the failure of self regulation in this field

• Stopping 'Normalis(ing) Medical Rule breaking.....

BUT HOW WILL WE ACHIEVE THIS; especially for Children & Young People- (CYP)?

I suggest the Children's Commissioner is approached and invited to the above working groups which discuss the 'Lived Experience of ME'......
The lived experience & lives or Merryn Maeve, Ella (current), Freyer need accounting for.

Locally in our area, we are compiling Case Studies for our SNNEICS, both for CYP with ME and for Children who act as carers for their adult family member with ME.

I am suggesting we start a thread for this here?

Suggest;

' Services for Children and Young people (CYP) with ME - Staring into the Abyss?'

What do others think?

 

The Children’s Commissioner for England is Dame Rachel de Souza.

As Children’s Commissioner I take on a crucial role, sitting at the heart of Government, delivering for children, and championing their voices and needs. As an educationalist, working directly with children in schools throughout my career, I have seen first-hand how passionate and compassionate children are.
This is an ambitious generation who want to succeed in life, but who also want to play their part in improving the world around them. They need us, as adults, to listen to them and ensure they get the right help to fulfil their true potential.

My priority has always been to listen to children across the country, to hear about their lives and the impact of lockdown, to help shape my time as Children’s Commissioner. That’s why in 2021, I launched The Big Ask, a survey of children in England.


12th August 2022
Share your family profile as part of the Children’s Commissioner’s Family Review
https://www.childrenscommissioner.g...of-the-childrens-commissioners-family-review/
Ultimately, we want to know what family means to you. These stories will show the government what real families look like in the twenty-first century.

If you want to be part of this exciting opportunity, you can share your family’s story by completing this short survey which will be open until 19th August.

The Children’s Commissioner’s Independent Family Review was commissioned by the Government in order to gain insights into support for families.

 

CHILDREN AND YOUNG PEOPLE’S HEALTH OUTCOMES FORUM – REPORT OF THE LONG TERM CONDITIONS, DISABILITY AND PALLIATIVE CARE SUB-GROUP

very interesting especially in light of current examples of poor care CYP.


Google in May 2016

• https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216856/CYP-Long-Term-Conditions.pdf

 

This 2022 post-NICE document is a horror. It's long, pays lipservice only to NICE 2021. The 'T' Word (Tiredness) is in there of course. I think that inserting the Tiredness word in as many documents as possible is now BPS policy. The treatment is CBT/GET at core, with heavy emphasis on 'thoughts and beliefs', and on increasing exercise/activity, surrounded by a huge amount of disguising waffle. The Document is very long. I can only highlight some of the very, very many problems with it, so will quote odd lines/paragraphs.



'CBT for Chronic Fatigue: Therapist Manual'

Version 4
05.01.2022

'PAEDIATRIC ME/CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK ... for supporting people with Chronic Fatigue Syndrome/ME (ME/CFS). The primary.'

Starbuck, J., Loades, M.E., & Chapple, K. | 2022

https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf



Page 4:
'The updated NICE guidelines (2021) recommend that Psychological therapy be available for supporting people with Chronic Fatigue Syndrome/ME (ME/CFS). The primary therapy that has been used and researched is Cognitive Behaviour Therapy (CBT)'

That gives the impression that NICE still recommends CBT. NICE does not, NICE says CBT should be available if wanted.



Page 8:
'Re-building self-confidence and enjoyment of activities
As a young person progresses through treatment it is possible to shift focus not just to the rebuilding of activities themselves but also to the enjoyment of them. CBT for ME/CFS can give the young person opportunities to explore why activities are important to them, and to reflect on themes such as their sense of self and identity. As a young person returns to old favoured activities (or indeed begins new ones) it is important to scaffold the rebuilding of their self-confidence; something which is likely to have taken several knocks during the course of their illness.'



Page 10:
'What is ME/CFS?: Psychoeducation about ME/CFS
Definitions and diagnosis
Chronic Fatigue Syndrome (CFS), sometimes referred to as Myalgic Encephal0myelitis (ME), is a health condition characterized by extreme tiredness.....

'To be diagnosed with ME/CFS a young person would need to meet the following four key criteria:
• Persistent fatigue, that is not life-long but has been ongoing for at least 3 months.
• The fatigue is not just due to exertion (instead, it is there in the background a lot of the time) and is not substantially improved by resting.
• Post-exertional malaise; the fatigue is worsened after increased activity. This can show itself 1-2 days after the busy time and can take a few days to recover from.
• Fatigue that is severe enough to significantly disrupt all areas of daily life e.g. going to school, hobbies or clubs, time with friends or family, etc.


Page 11
Onset and maintenance of ME/CFS
'The evidence points towards behavioural maintenance factors (activity patterns, sleep) and cognitive maintenance factors (thoughts and beliefs about fatigue). And this is where we can helpfully apply evidence-based treatments, including CBT, to enable the young person to make changes and work towards recovery from their fatigue.'


Page 11:
Recovery in ME/CFS
' ..... However the good news is that recovery rates from ME/CFS in young people are good. A Dutch study looking at recovery found that approximately 85% of young people were recovered (absence of severe fatigue) at 1 year after starting active ME/CFS treatment (internet based CBT for fatigue).
This data can be compared to a 27% recovery rate for those who were not in active treatment, after 1 year
(see Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L., & van de Putte, E. M. (2012).

Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. The Lancet, 379(9824), 1412-1418).

This data shows us a few things:
1. The recovery journey takes a matter of months, or a year, or perhaps longer. It is not something completed in weeks.
2. It suggests that many young people with ME/CFS will be recovered after 1 year of CBT.


So Bath fatigue Clinic IS stating that CBT is treatment for ME/CFS and that children can recover by doing CBT via the clinic.



Page 17
'it is hugely important to help the young person recognize the links between their own thoughts, feelings, behaviour, and symptoms of fatigue'


Page 23
'Increasing the activity baseline
When a young person has managed to sustain the baseline level of activity consistently for 2 weeks, they can then be instructed to increase this by 10-20% every week or two if appropriate. Therefore, using the above example, a baseline of 4 hours’ ‘red’ activity would then increase to something in the region of 4 ½ - 5 hours. The aim is to continue gradually increasing the baseline activity level in this step-wise fashion if appropriate until the young person can comfortably manage at least 8 hours’ high energy activity per day. At this point the young person will be working towards fulltime school attendance again and will have enough in their allowance to begin reinstating other activities outside of school.



Page 28
COGNITIVE WORK: THOUGHTS THAT ARE UNHELPFUL
'...... Common unhelpful themes in the thoughts of a young person with ME/CFS may include:

• A focus on symptoms or even looking out for them when they are not present
• Negative interpretation of symptoms, either predicting worsened fatigue and/or ‘blaming’ activity for the presence of symptoms'

 

Pathetic stuff. It is entering full manifesto-level realms with this. Terrifying what you would have to believe you have to write some of these things, given the Nice guidelines, regarding being emboldened to continue as you wish.

"were recovered (absence of severe fatigue)"

We really need a campaign that focuses on the power imbalance in research done on this population and questions of free will in responses bearing this in mind, and the reasonable perception participants would have of risk of significant issues from not 'performing' as required (despite claims 'it's separate' etc) in these studies, and in these clinics.

Such results then getting used to put people in even more precarious situations where they are used to inform expected recovery and prime with reasons being the patients' where failure occurs. What a nightmare. How are kids who do not manage to fake it and nod to get out of their care get dealt with? Persistent Refusal Syndrome type diagnoses?

Has anyone found testimony and feedback from people who actually attended these places from the horse's mouth ie outside of clinic's own literature/people speaking on it?

 

Do these "therapists", I use the word loosely, never see people who try to increase their activity and relapse and return to square one? Why do they always write as though treatment leads to steady improvement? How would they treat someone who keeps relapsing?

 

thread here
https://www.s4me.info/threads/cbt-f...tal-bath-uk-loades-m-e-starbuck-j-2020.16652/