UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Suffolkres said:
  1. Re,'"...One of the big barriers to an effective business plan for ME services is the lack of basic information about the demand in their area; the number of potential patients; the difficulties they face (ie symptoms PEM, disabilities); the care and services they need; and the extent to which current services met those needs...."
  2. Re, "...People with ME are front and centre of the whole project. It is led by people with ME. The work is being done by people with ME...."
REALity check and 2 decades of dedicated lobbying etc........

  • Sarah Archer was right, only a radical change at the top of NHSE and DHSC via ministerial intervention will do the trick and no amount of assessment toolkits and data will deliver that change imho. The data is there but it's being buried alive!
  • This is because you can lead the real obstacle, NHS E to water, but you cannot make it (or the non execs we know so well) drink.........

FYI All the above, 1 & 2, applies has been assessed and has resulted in a business case in our ICS;
A Specification/Pathway (and potential for a robust, accountable Service Model - through rigourous Key Performance Indicators KPIs, Change Audits) is being finally worked through, ahead of ICS board endorsement and Procurement, which will also have ME patient/ Carer involvement.

Why has it it taken 2 decades?
Changes precipitated in 2010 political NHS upheaval.....and changes in governance/ decison making ... we were nearly there in 2009-2012...
*****2012, NHS England and all the other littel NHS 'arms length' bodies..., now all subsumed within****
  • 2024- Due to delays precipitated by NHS England's decision making on specific funding arrangments this year, time is too tight to secure agreement as was hoped, in March 2025.
  • 2022-2024 Due to delays in the DHSC Delivery report, ICSs are ham strung in their decision making. They have had to address Health Inequalities without the benefit of the Specialised Funding Stream mechaismsm for ME which NHS England has off loaded onto regional ICSs.
  • 'We" Suffolk & Norfolk, here have had to drive this beast ourselves (with the help of some truely wonderful, exceptional Suffolk Commissioners/Contracts and Transformation managers since 2014- year 10 years!....) Plus Health Overview and Scrutiny, Elected local members, Health watch ? LINk before from 2006/2007.....!2 decades!

Sarah Archer was right, only a radical change at the top of NHSE and DHSC via ministerial intervention will do the trick and no amount of assessment toolkits and data will deliver that change imho.

This is because you can lead the NHS E to water, but you cannot make it drink.........

I hope we can pull this off locally to prove it can be done, but we have been there before, so many times over 2 decades.....
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NHS Providers | Page 10

https://nhsproviders.org/media/6992...tegies-for-addressing-health-inequalities.pdf


4. Overcoming barriers to implementing strategic priorities
Our review has identified several barriers can hinder the successful implementation of healthinequalities strategies. Understanding these challenges is essential for addressing them effectively and ensuring that the strategic priorities achieve their intended impact.
Resource constraints
A common barrier to implementing health inequalities strategies is a lack of adequate resources. This includes financial limitations, insufficient staffing, and inadequate infrastructure. Many trusts find it
challenging to allocate sufficient funds to new initiatives aimed at addressing health inequalities.
Additionally, a shortage of skilled personnel, such as public health specialists and community outreach workers, can limit trusts’ ability to deliver targeted interventions.
Data and measurement
Accurate data collection and analysis are critical for identifying and addressing health inequalities.
However, many trusts face difficulties in obtaining comprehensive and disaggregated data on patient demographics, social determinants of health, and health outcomes. Inconsistent data collection
methods, lack of standardised metrics, and challenges in sharing data across different organisations can impede trusts’ ability to accurately assess the scope and nature of health inequalities. Without reliable data, it is difficult to tailor interventions to specific needs and evaluate their effectiveness.
Culture and attitudes
Cultural factors within healthcare organisations can also pose significant barriers. This includes biases and stereotypes held by healthcare providers and staff, which can affect their interactions with
patients from diverse backgrounds. Such biases can lead to differential treatment and contribute to disparities in care. Moreover, a lack of cultural competence among healthcare professionals may
result in misunderstandings and miscommunications with patients, further exacerbating health inequalities.
Addressing the social determinants of health
Health inequalities are often rooted in complex social determinants, such as income inequality, education, housing, and access to healthcare. Addressing these determinants requires a coordinated
effort across multiple sectors, including healthcare, social services, education, and housing. However, the complexity and interdependence of these factors can make it difficult for trusts to design and NHS Providers | Page 11 implement comprehensive strategies and interventions. Moreover, while there is a clear role for trusts
as anchor institutions to address the wider determinants of health, they have limited control over the scope of factors outside the healthcare system that can constrain the effectiveness of interventions aimed at addressing social determinants.
Policy and regulatory environment
The broader policy and regulatory environment can also impact the implementation of health inequalities strategies. National policy, funding mechanisms, and regulatory requirements can either facilitate or hinder the efforts of healthcare trusts. For instance, policies and funding decisions that do not prioritise health equity and preventative services can limit the scope and impact of health inequalities strategies.
5. Conclusion
Trusts have made important progress in addressing health inequalities in recent years and this review outlines the importance of taking a strategic approach in embedding this work as core business andtaking meaningful action.

It is important to recognise that NHS trusts cannot tackle health inequalities alone, making progress relies on action across all sectors that impact the wider determinants of health. Our shared commitments to delivering the next generation NHS set out the importance of taking collaborative action to address the wider determinants of health and called for a whole- government approach (NHS Providers, 2024d). We look forward to working with the new government on this as part of their mission-led approach. It will be important for the new ten-year health plan to
recognise addressing health inequalities as a pre-condition of success for the long-term sustainability of the NHS and overall health of the population.
 
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Amw66 said:
From Sarah Tyson .
I'll respond - probably tomorrow.
If anyone wants me to include anything specific , let me know

This is the stats plan and was outlined in the grant application. Yes, they are standard stats for psychometric analysis as recommended in the COSMIN guidelines (I’m conducting a study on measurement properties • COSMIN) A stats plan for psychometric testing wouldn’t get published as it is covered in the COSMIN guidelines. It is only really the stats plan for large Phase III trials that are published, and then rarely in a peer-reviewed journal.
I am sorry you feel the survey is inaccessible. Our approach is based on the advice from the 25% group, DecodeME team, PhysioforME and Caroline Kingdon, plus the severely affected people in our advisory group and I thought it was pretty much spot on, tbh. The completion rates are very high, which suggests that the survey is acceptable and feasible for all participants, and I haven’t had any comments (either as feedback or people contacting me directly) in this or previous surveys indicating that they were harmed, or they did not complete because it was too taxing. But I am always keen to learn how to improve things, so please tell me more. Which parts do you think are inaccessible? Why? What should we do to make them more accessible?
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Can we see the grant application?

kudos for Sarah for explaining further. Unfortunately I think there’s an echo chamber, and “advice” may be listened to, but not heard.

Also the tail wagging the dog seems to have been revealed - building stats for commissioning services. Gotta show improvement if you want that funding…
 
Amw66 said:
So far removed from reality it's very sad.
FUNCAP exists , no need to reinvent a wheel which has inherent flaws .
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Perhaps I'm being a right cynical bastard here, but is the issue that they can't copyright FUNCAP and charge licensing fees for it? Am I mistaken (and I quite likely am) or does the Chalder Fatigue Scale charge a license fee for use? It does seem like a lot of validated questionnaires do.
 
Amw66 said:
From Sarah Tyson .
I'll respond - probably tomorrow.
If anyone wants me to include anything specific , let me know

This is the stats plan and was outlined in the grant application. Yes, they are standard stats for psychometric analysis as recommended in the COSMIN guidelines (I’m conducting a study on measurement properties • COSMIN) A stats plan for psychometric testing wouldn’t get published as it is covered in the COSMIN guidelines. It is only really the stats plan for large Phase III trials that are published, and then rarely in a peer-reviewed journal.
I am sorry you feel the survey is inaccessible. Our approach is based on the advice from the 25% group, DecodeME team, PhysioforME and Caroline Kingdon, plus the severely affected people in our advisory group and I thought it was pretty much spot on, tbh. The completion rates are very high, which suggests that the survey is acceptable and feasible for all participants, and I haven’t had any comments (either as feedback or people contacting me directly) in this or previous surveys indicating that they were harmed, or they did not complete because it was too taxing. But I am always keen to learn how to improve things, so please tell me more. Which parts do you think are inaccessible? Why? What should we do to make them more accessible?
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Yeah well, the fact she hasn't mentioned external validity, just the tools themselves is concerning. Psychometric doesn't mean much, we want to know what the weightings actually are. Basically if she is claiming that isn't necessary because she think she is doing something clever like using that algorithm to work out which 'activity' changes most link to which 'symptom changes' then it is inappropriate for her to be using lowest common denominator averages across severities (as well as different contexts). She doesn't seem to spot this.

I'm also not sure that she gets that severe is exponential in disability and PEM vs some of the milder forms. Comparing someone who gets PEM from a short phone call with those who get something completely different 'a bit' from 'doing too much exercise' is apples with oranges. Then there is the likelihood of not really knowing your illness/body yet vs the questions when newer in the illness. I’m not sure the questionnaire does a good job of being accessible for that because plot doesn’t make clear what is being looked for and trying to describe a level of pain in one place on one day bs another will be impacted by if somewhere else hurts more etc

Apparently being based on interpreting the advice of those groups isn't the same as getting them to test and approve it as safe. Did they?
It sounds like the similar thing she did here.

I haven’t had any comments (either as feedback or people contacting me directly) in this or previous surveys indicating that they were harmed, or they did not complete because it was too taxing
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Says the woman who made it very clear with abusive insults to all the last people who mentioned anythign she didn't like to teach people not to bother saying anything to her and to stay well away. Sorry but she can't pretend to wipe her hands of her own coercion in both demographic and feedback. Does she think calling people catastrophisers and all the rest of her nasty insults isn't gerrymandering?

I'd like to see a quesiton on the very unusual consent stuff too.

You'd have to have passed all her filters on insults, attitude, complete the full length, sign over your consent to even start trying to make any of these claims. If she doesn't understand that she shouldn't be getting ethical clearance to be anywhere near pwme.
 
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Suffolkres said:
From A Suffolk,

'is this the one Sarah Tyson is developing? I signed up to help and I found the process too difficult and tedious, incredibly long questionnaires. At the start they were using pwME’s precious little energy to create acronyms!

Then they leaked everyone’s email because they didn’t BCC, in breach of GDPR, and I pulled out of the process.

I haven’t read the most recent version of the questionnaires so I can’t really comment.'
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Oh no!
 
Sean said:
Never stopped IAPT being funded, despite a complete lack of meaningful results.

None of this is science driven. It is all for political show and convenience. Which is why it fails.
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Our local Long Covid Service; they want us to partner with........Lovely jubbly.....!!!!!

"Patients are discussed at regular Multi Disciplinary Team meetings, which includes input by GP, Physiotherapy, Speech & Language Therapy, the Chronic Fatigue Service, Mental Health and others.

The team reviews the patient and identifies any needs for further investigations or onward referrals to other partners, for example respiratory physiotherapy, Chronic Fatigue Service, IAPT, and social prescribing.

We refer to the English National Opera’s virtual programme using singing to help with breath control, which is very popular....'

We are less than enthusiastic about this approach for ME patients, particularly the SAs.... hence the current hiatus.

Healthwatch locally 'GET' it!

Working together: Andy Yacoub, Chief Executive, Healthwatch Suffolk- highlighted that we need people with lived experience around the table with commissioners, researchers and providers.
'All these groups add value and the contributions they offer are different.
We also have experiences with other post viral illnesses beyond long Covid that we can draw upon.
Only together, and with all participants having an equal voice, can we piece together this jigsaw.'

Well said Andy!
 
Suffolkres said:
Our local Long Covid Service; they want us to partner with........Lovely jubbly.....!!!!!

"Patients are discussed at regular Multi Disciplinary Team meetings, which includes input by GP, Physiotherapy, Speech & Language Therapy, the Chronic Fatigue Service, Mental Health and others.

The team reviews the patient and identifies any needs for further investigations or onward referrals to other partners, for example respiratory physiotherapy, Chronic Fatigue Service, IAPT, and social prescribing.

We refer to the English National Opera’s virtual programme using singing to help with breath control, which is very popular....'

We are less than enthusiastic about this approach for ME patients, particularly the SAs.... hence the current hiatus.

Healthwatch locally 'GET' it!

Working together: Andy Yacoub, Chief Executive, Healthwatch Suffolk- highlighted that we need people with lived experience around the table with commissioners, researchers and providers.
'All these groups add value and the contributions they offer are different.
We also have experiences with other post viral illnesses beyond long Covid that we can draw upon.
Only together, and with all participants having an equal voice, can we piece together this jigsaw.'

Well said Andy!
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Yep I think when I’ve looked at the long covid services they generally seem to be an ‘anything but [the actual condition me/cfs] service’

I get there isn’t a cure yet but until clinics are made to think it’s not an ok ‘innovation’ to have a service that doesn’t do regular follow-ups medically but is only funded to diagnose, triage if it’s anything else, then slapdash stuff on self-management that they’ve no idea whether it works because that’s the last time you’ll see them

and that there might well be little other medical things that are drawing on the same energy that mightnt seem so bad if it’s a not ill person (allergies, skin condition, deficiency) but all add up to whether you can vs can’t fit significant things. And how much harder navigating the generic support systems is when you’ve an energy limiting condition vs many other conditions. So people drown.

it feels a bit like an old days of ActionFraud - where they spent all the money on a hotline that pretended to take everything seriously but did nothing with the info or cases logged.

particularly when you think about what could just be gained from having decent stats with a proper medic following up each year. We could then see how many get very severe or severe and if things like b12 work for any of how prevalent certain straightforward issues are like the feeding stuff and prepping for it.

sorry going on and you know all this

but I can see why you feel conned by being combined with the ‘anything but servuce’ or is it a ‘polo mint service’?

I do like a catchy name that makes it hard to deny when it calls out the dies what it says on the tin.

it’s not like all those peoples jobs are cheap so the excuses of funding at the same time as that (and it not improving anyone so no value for money at all as it can’t do anything improvement wise) pees me off
 
bobbler said:
Yep I think when I’ve looked at the long covid services they generally seem to be an ‘anything but [the actual condition me/cfs] service’

I get there isn’t a cure yet but until clinics are made to think it’s not an ok ‘innovation’ to have a service that doesn’t do regular follow-ups medically but is only funded to diagnose, triage if it’s anything else, then slapdash stuff on self-management that they’ve no idea whether it works because that’s the last time you’ll see them

and that there might well be little other medical things that are drawing on the same energy that mightnt seem so bad if it’s a not ill person (allergies, skin condition, deficiency) but all add up to whether you can vs can’t fit significant things. And how much harder navigating the generic support systems is when you’ve an energy limiting condition vs many other conditions. So people drown.

it feels a bit like an old days of ActionFraud - where they spent all the money on a hotline that pretended to take everything seriously but did nothing with the info or cases logged.

particularly when you think about what could just be gained from having decent stats with a proper medic following up each year. We could then see how many get very severe or severe and if things like b12 work for any of how prevalent certain straightforward issues are like the feeding stuff and prepping for it.

sorry going on and you know all this

but I can see why you feel conned by being combined with the ‘anything but servuce’ or is it a ‘polo mint service’?

I do like a catchy name that makes it hard to deny when it calls out the dies what it says on the tin.

it’s not like all those peoples jobs are cheap so the excuses of funding at the same time as that (and it not improving anyone so no value for money at all as it can’t do anything improvement wise) pees me off
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'..sorry going on and you know all this...' Please don't apologise as you have clearly articulated what we think. Do they get the message? They do not!

Have ago at Kiactive... golf! https://nhsaccelerator.com/innovation/kiactiv/ KiActiv is a mentor-guided digital therapy which enables patients with long term conditions and those on rehabilitation pathways to self-care at home using their personal everyday physical activity..

Tommy Parker-( Any relation?)
is a passionate advocate for physical activity as a medicine. His vision for everyday physical activity and self-care is being delivered across multiple healthcare pathways, creating significant social impact. As an economist he strongly believes in demonstrating measurable health outcomes and positive economic impact.
 
Suffolkres said:
'..sorry going on and you know all this...' Please don't apologise as you have clearly articulated what we think. Do they get the message? They do not!

Have ago at Kiactive... golf! https://nhsaccelerator.com/innovation/kiactiv/ KiActiv is a mentor-guided digital therapy which enables patients with long term conditions and those on rehabilitation pathways to self-care at home using their personal everyday physical activity
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Combining “us” with any other group is ridiculous, the NICE guideline is clear that we shouldn’t be offered a general programme open to other people. Now people will be getting “breathing exercise through singing” (not me when I can’t speak) and home golf (when I can’t sit up) but I just ignore those bits? I sit those parts out whilst the patients with rehab needs get to do them?

Also, this KiActive seems to include using a wearable, which I’m assured by Sarah Tyson is unreliable for NHS data.
 
Suffolkres said:
'..sorry going on and you know all this...' Please don't apologise as you have clearly articulated what we think. Do they get the message? They do not!

Have ago at Kiactive... golf! https://nhsaccelerator.com/innovation/kiactiv/ KiActiv is a mentor-guided digital therapy which enables patients with long term conditions and those on rehabilitation pathways to self-care at home using their personal everyday physical activity..

Tommy Parker-( Any relation?)
is a passionate advocate for physical activity as a medicine. His vision for everyday physical activity and self-care is being delivered across multiple healthcare pathways, creating significant social impact. As an economist he strongly believes in demonstrating measurable health outcomes and positive economic impact.
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Ugggh

definitely intrigued by the surname!
 
Just to add the I have recently had a sleep apnea test using an NHS wearable, an acupebble. It arrived by post, was worn overnight and was then returned by post. It was easy to apply and remove. The difficult bit was going to sleep with it on but that happened eventually. It was much easier than going to a sleep lab for assessment.

I received a text saying the test had been successfully completed but haven't seen the respiratory physician to receive the results.

Edit: MOD Am not sure that this should be placed here. There are threads on sleep but I was thinking this is more appropriate to 'wearables'. Not sure.
 
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Binkie4 said:
Just to add the I have recently had a sleep apnea test using an NHS wearable, an acupebble. It arrived by post, was worn overnight and was then returned by post. It was easy to apply and remove. The difficult bit was going to sleep with it on but that happened eventually. It was much easier than going to a sleep lab for assessment.

I received a text saying the test had been successfully completed but haven't seen the respiratory physician to receive the results.

Edit: MOD Am not sure that this should be placed here. There are threads on sleep but I was thinking this is more appropriate to 'wearables'.
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I’m just taking every opportunity to be facetious about Sarah Tyson claiming the NHS and Wearables are like oil and water and will never mix.
*apart from micellar water which is a mix of oil and water, making this an ideal analogy.
 
MrMagoo said:
I’m just taking every opportunity to be facetious about Sarah Tyson claiming the NHS and Wearables are like oil and water and will never mix.
*apart from micellar water which is a mix of oil and water, making this an ideal analogy.
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Lots of people locally are using Visible wearable and app to monitor heart rate and to pace.
They swear by it and NHS Transformation lead for ME locally was open minded about funding it as a trial. Whereas Kiactive is about rehabilitation..
The vagus nerve stimulation is also of interest.
 
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