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

Discussion in 'UK clinics and doctors' started by Suffolkres, Oct 2, 2018.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I hope you are well and thank you for your patience. The engagement opportunity is now ready to share with patients and family carers for their input on the combined pathway, to help shape the service spec. This will be shared urgently with all patients and family carers on the current pathways, for their opportunity to feed in and share amongst their networks. We will also use wider communications.

    You can find this using the Lets Talk SNEE platform, a dedicated place for people and communities to take part in discussions and service transformation. Please use the following link to view, share and take part: Transformation of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME & CFS) and Long COVID-19 service pathway | Lets Talk SNEE


    You may notice that this has replaced the page which was started following the 2021 NICE guidance, that yourself and the group contributed to previously. The team will use this engagement, and all insights, research and reports available to inform the new service spec.

    In the time and scope for this transformation, at this late stage, I have advised this is the most appropriate method for this opportunity, and further work can be undertaken with people with lived experience to commission and evaluate the services moving forward, as agreed and planned by ICB colleagues.

    Best wishes,
    Su
     
  2. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Coproduction Lead ICB
    I hope you are well and thank you for your patience. The engagement opportunity is now ready to share with patients and family carers for their input on the combined pathway, to help shape the service spec. This will be shared urgently with all patients and family carers on the current pathways, for their opportunity to feed in and share amongst their networks. We will also use wider communications.

    You can find this using the Lets Talk SNEE platform, a dedicated place for people and communities to take part in discussions and service transformation. Please use the following link to view, share and take part: Transformation of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME & CFS) and Long COVID-19 service pathway | Lets Talk SNEE
    You may notice that this has replaced the page which was started following the 2021 NICE guidance, that yourself and the group contributed to previously. The team will use this engagement, and all insights, research and reports available to inform the new service spec.

    In the time and scope for this transformation, at this late stage, I have advised this is the most appropriate method for this opportunity, and further work can be undertaken with people with lived experience to commission and evaluate the services moving forward, as agreed and planned by ICB colleagues.

    Best wishes,
    Su
     
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  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    https://www.letstalksnee.co.uk/me-c...rome-me-cfs-and-long-covid-19-service-pathway
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I wonder what people think of this.
    It acknowledges a need to provide a service for severe patients.
    But otherwise it looks very much like a whitewashed multidisciplinary BACME programme with a notional doctor somewhere in the background.
    The amount of empty bureaucratic language is extraordinary but I guess standard now.
     
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  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    We said simply,
    The work that B and I do is based on feedback from hundreds of service users over the years, mainly from local support groups, social media and ECCH Change Audits.
    Common themes have emerged such as;
    • the importance of seeing a doctor who specialises in ME&CFS,
    • GP education and awareness,
    • care for the severely affected,
    • medications for symptom control,
    • screening for coexisting conditions,
    • care and support plans,
    • the use of tech such as Visible,
    • support for benefit claims etc.
    • Also the need for service to be connected with or engaged in research.....

    We have sought to address these concerns in the specification.
    The funding is there available, but subject to conflictioning interests, and a clearly different emphasis steer and aspirations....
    As well as overall direction of travel... and level of expertise of service medical lead ....
    We want dedicated ME competent doctor...
    They didn't...

    (existing LC SNELCAS)
     
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  6. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Feedback so far suggests the natives and responders to date are very displeased with current provision. ....
    Well that's no surprise!
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The link doesn't work for me @Suffolkres .
    It is still all very opaque to me what is actually being proposed.
    I am here to give a view if it is wanted.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    One thing that seems inappropriate to me is that it looks as if the tender is asking for bidders to be ready to provide a complete service immediately. Since we have no real idea what a service ought to look like I cannot see how anyone can honestly do that. The likelihood is that bidders will appear who claim to provide what is needed but will simply recruit the same people as before.
     
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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    That has always been our fear too.
    So HOW to ensure that doesn't come to pass is the critical question....
    How to effectively hold provider to account within NHS bureaurocratic systems is the test.
    KPI's are often limited, tests like Friends & Family merely tread water...
    All ideas on how to effect a real change would be welcomed!
     
    Last edited: Nov 6, 2024
  10. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    It doesn’t mitigate the lack of actual medical options but..one piece of the puzzle could be having an ongoing budget for lived experience involvement, having a group of properly involved lived experience reps (as opposed to helicoptering people in for one question, where they don’t have enough of the context or the relationships with the staff to actually have any meaningful influence), having them on recruitment panels, involved in creating key ways of working (relevant parts of standard operating procedures, specific policies), having them involved in periodic contract monitoring meetings and steering groups. This requires budget (reps should be paid) and somebody good to support the reps in their role and with any accessibility needs. They need to have the chance to build relationships with the service staff.

    I know I’m probably preaching to the choir!
     
  11. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    I think it’s sneaky including a requirement to be able to stand a service up pretty much immediately, but who is going to challenge the ICB on compliance with procurement regulations if there isn’t anybody else who could deliver the service anyway?
     
  12. bobbler

    bobbler Senior Member (Voting Rights)

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    Gosh I hate watching this

    it looks like the all to familiar war of attrition for the illest to have a say - they put their health aside and do it once and that should be that unless it’s really well-planned additional reasonable questions with a big time lag. And their word should count for more and have proper independent advocate support to push it through not be down to the community exhausting itself if they even have good support from that

    otherwise it’s the same old tricks whether deliberate or not of ‘unless you can sit in another room for two hours and try and fight against people who’ve 100 x more sitting hours than you do that week for a word in edgeways, but they just have to wait an hour til you’re collapsed inside …’

    I just hate the facade and game playing so much at this illness

    I do think we’ve ended up with these things no one else wants being dumped on us because we are vulnerable and all the horrible dynamics you watch that are cliches that happen (like some more healthy person waltzing in an speaking for them taking advantage because of resetting rules to ‘whoever can turn up to ten things gets the day’ not ‘whoever genuinely listens and represents’ etc)
     
  13. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    It’s a real problem isn't it, I wish services and staff would just do the right thing and do it well without having to be guided and hand held.

    Nobody should be asked to put their health aside to do lived experience work, in fact none of us should have to put our health aside to be advocates for ourselves, and people with more severe illness shouldn’t be forced to rely on people with less severe illness to advocate for them either.

    This is not unique to this illness, unfortunately.

    Lived experience reps often ask to be involved in the ways I listed above, design it that way (obviously that is not necessarily something to celebrate - it means they know it’s needed).

    How would it look to you in an ideal world?
     
  14. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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  15. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    I’m sure I saw something in the spec about arranging independent advocates for individual patients, is that the sort of independent advocacy you were referring to?
     
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  16. bobbler

    bobbler Senior Member (Voting Rights)

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    For a start there is obviously something missing on the procurement side from what you describe having some dept that properly holds to account and liaises with the most in-need users (instead of the low hanging fruit to tick the box - there don’t seem to be enough regs on ‘who counts’ and then having to make adjustments to taking process down to being done in a way that is accessible to them and doesn’t take advantage)

    as you’ve said it’s a vulnerability thing that on this occasion isn’t me specific but that ‘think they know what it is’ issue of the illness is a major problem. And splitting it across each trust having to be done individually and all the back and forth in bids means even a charity like 25% would have no chance and I can’t imagine how much funding you’d need to stay on ties and oversight a
     
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  17. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    We created the above over 2 decades. We were unequivocal and independant. Had good support from Overview and Scrutiny/ MPs/ APPG etc
    But our preferred pathway and outcomes were not shared by all those within. Suffolk Commissioning have been fantastic.
    If 'they', other Partners don't like the message, they shoot tbe message and organise a new less challenging one!
     
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  18. bobbler

    bobbler Senior Member (Voting Rights)

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    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
     
    Last edited: Nov 6, 2024
  19. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    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!
     
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  20. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    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.
     
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