United Kingdom: News from Forward-ME Group

It is good to see some Forward ME minutes but I think it would have been helpful if there had been a bit more detail. I got a bit confused and the severe brain fog doesn't help.

For example there has been a lot of change of personnel recently and it would be useful to know which organisations individuals represent. Also acronyms could be spelled out or a glossary provided. Also with reference to point 2, what does "we" and " our" refer to? Forward M E does not raise funds so is it all the charities? If so, I think it would be helpful to name those involved.

I do think it a very good idea to research the difference in funding between ME and other chronic illnesses as a lever to try and increase ME funding.
 
Binkie4 said:
For example there has been a lot of change of personnel recently and it would be useful to know which organisations individuals represent. Also acronyms could be spelled out or a glossary provided.
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Agree. I have been around a while so had a reasonable background knowledge but don’t recognise a lot of names or maybe have seen the name once or twice before but don’t remember the group they are associated with.
 
Andrew suggested we publish a list on our websites of all medical establishments and individuals who are ignoring the new guidelines, whether due to administrative inefficiency or as a stance on their attitude and policy.
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Definitely do this. I would love for their to be a place to report and potentially list individual doctors as well, ideally one that the team can contact directly to correct their beliefs and potentially send for retraining. I firmly believe fixing the NHS is going to require a lot more than a few letters to institutions to update their websites and request there be an ME service available in an area, its going to require ME patients reporting when dismissal of their condition was used and bad treatments were proposed and ensuring that what is listed on the website is actually happening. There remains no severe ME provision in the NHS at all right now and I can't think of one other disease where the most severe sufferers are the ones unable to get treatment as the NHS will refuse them, changing that is going to take some heavy pushing. I consider listing bad doctors is at this stage important for protecting ME patients for medical negligence and harm which is the norm in the NHS right now.

Millions Missing (Tues 13th Sept): Denise said plans were still coming together and her main requests from FME members is to invite their members to attend and share any suggestions of researchers or MP’s who would be interested to speak on the day.
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Are we doing the shoes thing again or another way of representing the millions who are missing in the protest itself? If you need something from sufferers that communication needs to go out ASAP.
 
The bigger question is why is the NHS is willing to fund departments that don't follow the guidelines? Why would you pay for departments that are harming patients willingly? Name and shame is a start if you expect them to change at some point soon its been nearly a year since the guidance change and many departments are in open revolt, funding should be withdrawn. Then it becomes a simple matter of people reporting individual doctors who are using banned techniques on patients while receiving NHS funding who need disciplining or firing.
 
BrightCandle said:
The bigger question is why is the NHS is willing to fund departments that don't follow the guidelines? Why would you pay for departments that are harming patients willingly? Name and shame is a start if you expect them to change at some point soon its been nearly a year since the guidance change and many departments are in open revolt, funding should be withdrawn. Then it becomes a simple matter of people reporting individual doctors who are using banned techniques on patients while receiving NHS funding who need disciplining or firing.
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Simple answer is a guideline is only a guideline and doesn't trump medical expertise. There are no 'banned' techniques as such only a limitation on how certain interventions are prescribed.

Deconstructing the whole funding/contract/commissioning process for a given service requires something far more complex - but we are a long way from being able to identify any individual as being a target for disciplinary procedures. The contracting elements within the NHS however are a different matter, although naming and shaming at the point where the NHS is facing what is likely to be its most challenging winter in its entire history and where in England, the whole contracting commissioning structure is slated for change, might not be a successful strategy.

Personally I'd suggest friendly encouragement remains the best tactic.

Edit - should have been "commissioning" rather than "contracting" for latest see: https://www.england.nhs.uk/commissioning/who-commissions-nhs-services/
 
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Maybe the time when contracting is reorganising is actually an opportunity as the status quo is no longer fixed.

Certainly any focus on a new/replacement care pathway for MECFS should prioritise care for severe/very severely affected PWME. Commissioners should be encouraged to understand this.
 
NelliePledge said:
Maybe the time when contracting is reorganising is actually an opportunity as the status quo is no longer fixed.

Certainly any focus on a new/replacement care pathway for MECFS should prioritise care for severe/very severely affected PWME. Commissioners should be encouraged to understand this.
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To do that will need effective monitoring of the re-organsation process - personally I've got no handle on what the new set up https://www.england.nhs.uk/integratedcare/what-is-integrated-care/ means
 
CRG said:
To do that will need effective monitoring of the re-organsation process - personally I've got no handle on what the new set up https://www.england.nhs.uk/integratedcare/what-is-integrated-care/ means
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We are trying/trialing this out at the moment............ a new/replacement care pathway for MECFS, being developed under a new ICS ....and learning along the way.
The NHS Commissioning & Transformation teams are leading the way and issuing a wake up call to those who never even realisied they had a responsibility and Duty of Care as Partner organisations. Local Authorities Social Care Education etc..)
 
NelliePledge said:
Not my call obviously and apologies if this is already in hand but it strikes me that Forward ME could probably benefit from you briefing them about how you’re doing that @Suffolkres
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I think feed back is filtering through on this via Charles and others.


'Integration" aside , the commitment to fund a proper service, plus the availability of the right clinicians, health care professionals and their availability, will be more of the problem I suspect.

From Kings info...
'ICSs have existed in one form or another since 2016, but for most of this time have operated as informal partnerships using soft power and influence to achieve their objectives.....'
Mmmm, soft power? Is that a carrot rather than a stick?

The more I look and think about all this, if BACME are providing the role model, then I have little confidence that even with DHSC interest, any success can be guaranteed.......

Our Strategic ICS Director sent me this;


https://www.kingsfund.org.uk/publications/integrated-care-systems-explained

Ok in principle to prevent silo mentality.... but sharing budgets? What budgets?!
The truth will out!
 
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