United Kingdom - Suffolk and North East Essex ME/CFS services

Yes. Sorry struggling right now so left last post half done. I’m glad there is some advocate offered and hope they are good.

you get sense lawyers and admin who deal with these things a lot know all the tricks and tweaks that happen in these things

but each time it’s some ill people or charity of them (and you hope it’s one that can focus on the right things) having their resources drained by games and back and forth

and it feels like the process isn’t currently designed to actually try and get it right just tick the boxes if get what someone else wants to offer whilst finding someone they can claimed signed it off as ‘patient input’

but the reason for that input being built in is either just politics or if it is about getting it right so it helps by having the more experienced patients who each level understood the reason behind is lost to the ‘process must be followed’ without realising that process needs to be adapted because it whittles out the right input at the moment

focus groups might be great for other illnesses - I don’t know how to adapt all this but there sure must be some professionals who could think about what is really needed and how to ‘make the most of’ patient input given different issues with different conditions

 

I am highly interested in this discussion - what has happened in this example and what bobbler is seeing and saying, but I am not fully understanding the detail, I will come at it with fresh eyes tomorrow!

 

I would hazard an educated guess that in the majority of instances you would be absolutely right. Not all, but that would be the exception to the rule.

 

Probably as they issued us a broken link first off......
I will check via their website

 

Grateful for all your interest and your comments.

 

https://suffolkandnortheastessex.ic...r-new-combined-post-viral-condition-services/

 

Just as a declaration of interest, when I work (I am currently off sick) my work isn't very far away from being on the other side of the table. I don't work on anything ME/CFS related. I don't feel like one of them because of my illness experiences, opinions, and because I am physically separated (working from home) and full accessibility and inclusion just isn't in place, but for transparency I hereby declare that is why I am asking so many questions!

 

This one..?
https://www.letstalksnee.co.uk/me-c...d-patient-and-carer-focus-groups-sign-up-form

Our coproduction work was based on this 2022 survey and related outcomes.(We were fully involved with framing this survey, unlike the 2024 one sprung on us out of the ether!

 

Is there any mileage in pointing out to the commissioners that they are likely to be wasting a huge amount of money on multidisciplinary teams and that a doctor would almost certainly be far cheaper?

I worry a bit about major patient/advocate involvement because patients are likely to say yes please to whatever is offered thinking it might help - physiotherapy for instance. It is a standard tactic for the BACME people to gather appreciative patients around who will say thank you very much. Anyone who doesn't will be elbowed out.

 

Yes, Jo. We have repeatedly refused to sign up to a therapy based service, (since 2003!!!) Rejecting a therapy led / community based service.
That's where our fight started under old PCT regime.
Roll on 20 yrs. 2024 rejection of Foundation Trust model.
Especially as the existing LC service has been rather partial to band 7 and 8 AHPs appointments.....
We have argued that all along ......
Consultants are often cheaper than GPs! Or GPwSI (and more accessible and available
Don't forget Dr Nacul is a GP physician but also a consultant in Public Health etc....

 

I think these are some of the issues being raised, am I getting it? Hopefully a summary is useful to others too.

1. Finding someone to do what has been designed
   1. If the perfect service spec is co-designed and advertised, is anybody competent and able to provide it?
   2. If an advert says the applicant must mobilise the service immediately, does that unfairly advantage providers already providing similar services / the old service? Who would compete and potentially challenge this process?
2. Making sure what has been designed is done properly
   1. What if bidders say the right things but just recruit the same people as before and nothing genuinely changes?
   2. Can we trust services and commissioners to deliver what has been co-designed? KPIs and Friends & Family surveys are embedded but are just monitoring and feedback tools, they don’t guarantee information will be collected fairly, interpreted properly, or acted upon, and are not the full picture.
   3. Does the answer involve ongoing patient involvement? How? *
3. Knowing what to design and relying on patients
   1. Jo suggests that the spec describes an MDT approach that is too much about therapy, and asked:
      1. Do patients /we agree that the spec describes an MDT approach that is too much therapy?
      2. When patients are involved in services design, planning etc., what do they advocate for, do they know and consider the issues with therapy heavy models, are they bias towards what they know?
4. Patient involvement at any stage of designing, delivering, evaluating etc.* in UK NHS services**
   1. How are the voices of the more severe heard in terms of patient involvement?
   2. What are the barriers and how do you overcome them?
   3. Incompetent (by design or not) NHS processes and systems creating more work for involved patients (e.g. having to chase, push, spot and make corrections to documents) making it less accessible.
      1. Inaccessible ways of working - long meetings, multiple meetings, dense information, commissioning staff (and whoever else is there) not listening or listening but not hearing, or hearing but not effectively actioning). Long term involvement being more effective (assumption?) but Kessler accessible.
      2. The more ill people are the harder it can be to be an ‘involved patient’ because of the inaccessibility, and the illness, so less ill patients who have different needs and might not understand more severe patients needs have more ability to influence, potentially to the detriment of the more severe.
      3. Reliance on patients to advocate for change at strategic level.
   4. Who ensures patient involvement has been done properly and fairly?
   5. What would we change about the way involved patients are asked to ‘engage’ with commissioners - how could it be done?

*I like the attached diagram showing the commissioning cycle and examples of patient involvement at different stages (not an endorsement).
** We have threads on involvement that discuss some of the accessibility and representation issues, but I don’t think we have one specifically on involvement to influence NHS MECFS services through all stages including after design and procurement of a new service - I will look.

Used ‘patients’ for brevity, but mean ‘patients and carers’.

edit-format, removed unnecessary link

 

That seems a good summary.
A really big problem is that although NICE did not recommend GET it still recommends a 'management programme' without any evidence base.

I suspect a lot of patient would like several sessions of advice on pacing, but the reality is that we know nothing about what to advise beyond not overdoing things and giving suggestions made by other patients in a leaflet. There is no justification for 'tailored' activity management.

Monitoring of services will be like Sarah Tyson's PROMs, designed to say how nice it all is.

We are back to the question we were asking in 2017 - is it better to have an old style service or no service if we cannot have a new-style service because there is nobody to deliver it.

 

This whole thing of getting local PwME to advise their local service on what to provide seems crazy to me. ME/CFS is poorly understood, it's been under siege for years by the BPS crowd, the NHS is riddled with false beliefs about it, and patients with often no knowledge base other than their lived experience and the brainwashing they've been given are supposed to step powerless into that situation and give advice on how to run a system that they don't understand.

Present company excepted, obviously, @Suffolkres - what you've been doing has been phenomenal. But this system for consulting patients on services is ridiculous. IMO we need a top-down national framework for provision co-created by the charities, by sensible NHS doctors who haven't drunk the BPS Koolaid (such as Dr Bansal?) and by patients who have years of understanding of the issues and who have demonstrated expertise.

This is another area where an S4ME project would be great but I suspect we're all too knackered to lead on it.

Although we could have input into someone else's draft, or answer a questionnaire...

 

And I don't blame you. It's appalling that we've ended up with ME/CFS provision that patients are rightly afraid of.

 

I could not agree more with all the sentiment here.
Our Eastern region was unusual in that it had a well respected regional but 'covert ' under the radar admin/outside bureaucracy, consultant lead service in the 1980s out of Pajet Hospital Lowestoft. Suffolk and Norfolk patients.
After it was formalised in commissioning terms 2000, the trouble and interference started from within NHS.
The collaborative attempts to remedy this are well recorded. Many folk, many groups, hundreds of people including clinicians and politicians who were role models. Bless them. This was testimony to the strength of feeling and East Anglian bloody mindedness. I dare say.
We reps, just dung our heels in and refused to go away or throw the towel in!

More fool us you might say!

While we can, we will but some time soon, a managed exit will be in order

 

I guess it depends on show bad the old style service is. I was gaslight terrible by the former Norfolk and Suffolk service and they didn't even teach pacing adequately enough to stop me drastically deteriorating.

Other than standing up a pure BPS driven service, it would be hard for the service to be worse than the degraded one ECCH provides

BTW @Suffolkres I actually got a focus group invite but didn't respond as one of the questions was whether you lived in the country so assume they want residents.

I am watching closely. If this succeeds I will seriously consider moving over the county line to become eligible just so as to not be gaslit anymore that counts for a lot...

 

Interesting discussion. Excellent points about how services are designed especially @Haveyoutriedyoga .Thank you.

A barrier to service development generally is that provider information is commercially sensitive, this inhibits open discussion about proposals for the new service. Another barrier is that within the NHS co-production seems to mean different things to different people, so we are working within a shifting framework depending on who we are interacting with. Different individuals, even within the same team, have different levels of commitment. Some have had an transformative level of commitment, others less so. Some see service user involvement as an opportunity to deliver a better service, others seem it as little more than a time consuming pain in the behind.

@Suffolkres and I are limited to what we can say due to confidentiality. However, had it not been for service user input earlier this year things now would be looking much more bleak, in our view, than is currently proposed.

The severely affected have been left on the sidelines for years, if not decades, and the spec does a lot to address this significant inequality of care.

A big problem is not only writing the spec, but the way the spec is interpreted by the provider. The mindset of providers, and commissioners, is in a therapy model. Ideally there needs to be a national steer away from this. Locally what is needed is a medical ME specialist lead, to help design, deliver and drive forward a medically led ME service and to move away from a therapy focused model to something more balanced. The difficulty is finding doctors who take a biomedical approach, have the appropriate interpersonal skills, and also are available to jump in at pretty short notice.

I do think there is a place for tailored activity management. Pacing is incredibly difficult, not everyone "gets it" within a couple of sessions, and need more support and guidance. In addition more sessions gives the opportunity for the impact on pacing of other factors such as coexisting conditions, medication and the use of tech eg Visible.

The pool of potential providers is not likely to be overwhelming, so we have to work with what there is. If we don't then the "therapy model" alone will be delivered, and become more embedded. When finances get squeezed, a therapy service just doesn't have the clout of a medical service, and as a result is underfunding, and the service gradually declines.

And of course, this new service is proposed as a combined service with long covid, which adds further complexity into the mix. Especially as long covid services tend to take a rehabilitation approach rather than an energy conservation approach.

One of the reasons we have put so much into this up until now is that we are of the view that it is much harder to try and change things after the provider has been awarded the contract.

It's impossible to see how this will all end up, so much will depend on what providers express an interest at this stage, and their views on whether they can deliver the spec.

It's definitely had a detrimental impact on my health, this past year has been especially difficult. Teams meetings are very energy intensive, as is reviewing repeatedly revised versions of the spec and all the misunderstandings and crap that goes on in-between.

Overall this has been incredibly challenging, and I couldn't have kept going without @Suffolkres ....

 

I appreciate all the hard work you have put into this @Daisy
What I would like to understand more, though is the need for sessions for pacing.

I have no doubt that pacing is difficult but if we have no evidence base for recommending anything specific - i.e. 'guidance' - then is there any reason to think that such guidance is going to help. The overwhelming experience seems to have been that therapists get it wrong, not right. Members here indicate that their pacing needs are all vastly different. That might seem to mean that personalised advice is needed but isn't the reality that only the patient can work that out? Health professionals have no knowledge on which to base 'personalised advice' since they have no understanding of what makes one person different from another.

I am worried that therapists are being asked for something that cannot realistically be expected.

If anything about the details of pacing was know it would be written down and tested and it isn't as far as I know.

I agree that support is justified, but that applies to just about anyone with a long term illness and people with other illnesses often get a raw deal too. There do at least tend to be recognised follow up systems and that is clearly seriously missing for ME/CFS but I am unclear why that cannot be covered by a physician with the help of a nurse with OT skills.