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Dr Nacul to provide care for moderate and severe patients in Suffolk

Discussion in 'General ME/CFS News' started by Daisy, Jul 9, 2018.

  1. Daisy

    Daisy Senior Member (Voting Rights)

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  2. Daisy

    Daisy Senior Member (Voting Rights)

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    Text of the post:

    "Dr Luis Nacul, internationally respected ME clinician and researcher, to provide specialist care in Suffolk

    Suffolk Commissioning have released a statement today confirming that Dr Luis Nacul will be providing specialist care for patients in Suffolk with moderate and severe ME and CFS. This will be on a limited basis from July 2018. Currently care will not be provided for children and young people and home visits will be considered on a case by case basis. Referral will be via your GP.

    You may recall that Dr Nacul leads the CureME Team at the London School of Hygiene and Tropical Medicine. The team is driving research for the recognition, diagnosis and treatment of ME and CFS. Dr Nacul and his team are experienced, compassionate and committed to research into ME and CFS. The CureME team runs the MECFS Biobank which has included the collection of samples and clinical data from patients, including the severely affected, across Suffolk and Norfolk. We are incredibly lucky that the services of Dr Nacul have been secured, even though it is on a limited basis.

    In 2016 Dr Nacul, at the request of six of the seven CCG's who commission the Norfolk and Suffolk ME and CFS Service, carried out a feasibility assessment for the implementation of a biomedical consultant led service in our area.

    Unfortunately the CCG's in Norfolk, Suffolk and Gt Yarmouth and Waveney were unable to agree a joint way forward. This appeared to be due in part at least to the differences between the CCG's regarding the way services for people with ME and CFS are prioritised.

    In addition, East Coast Community Health (ECCH), who deliver the current service have been, throughout the service development process, reluctant to embrace change to improve outcomes for patients. Annual patient surveys by ECCH have demonstrated year on year worsening outcomes following contact by patients with the service. ECCH identified additional costs after the feasibility study was carried out which meant that the proposals for the new service could no longer be delivered on a cost neutral basis.

    Suffolk Commissioning have been leading the Service Development process since 2014 and have remained committed throughout to delivering much needed improvements in care for people with ME and CFS. The Patient / Carer Group would like to express our sincere thanks for all their hard work in what has been a very difficult climate financially and organisationally.

    Patients and Carers will continue to monitor the service delivered by ECCH and by Dr Nacul. It is over 10 years since the service development process began and it has been clearly established what patients want from their local service. Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk will continue to be addressed by Patients and Carers.

    This website will continue to be updated with news of changes as they occur. We hope that the service provided by Dr Nacul will be expanded as demand grows."
     
    Maria1, MEMarge, Dolphin and 16 others like this.
  3. Nellie

    Nellie Senior Member (Voting Rights)

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    Wish I could move to Suffolk.
     
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  4. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    The service is for people who are assessed by their GP to have made limited improvement having been referred and treated by the ME & CFS service provided by East Coast Community Healthcare.

    Dr Nacul is experienced in public health and general practice and is a Clinical Associate Professor in epidemiology and public health at the London School of Hygiene and Tropical Medicine. ME & CFS is his main research interest. The Suffolk GP Federation is a not-for- profit organisation owned by 58 GP practices and delivers a wide range of services across Suffolk. They will provide Dr Nacul with clinical governance oversight and administration support.

    Service referrals will made by GPs and Dr Nacul starts working part-time in Suffolk from July, and will be based at The Riverside Clinic, 2-4 Landseer Road, Ipswich, Suffolk, IP3 OAZ.

    A summary of the consultation will be sent to the patient and the GP practice. Dr Nacul is unable to prescribe, make direct referrals to other services, or write any benefit letters.

    Why is he unable to prescribe, consultants usually have this role, is it his own limitations or due to the NICE "nothing is licensed for CFS" except CBT exasperating approach.
     
    Last edited: Jul 9, 2018
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  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That last paragraph caught my attention. So what can he do? Advise on supplements and pacing?
     
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  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    In addition, East Coast Community Health (ECCH), who deliver the current service have been, throughout the service development process, reluctant to embrace change to improve outcomes for patients. Annual patient surveys by ECCH have demonstrated year on year worsening outcomes following contact by patients with the service. ECCH identified additional costs after the feasibility study was carried out which meant that the proposals for the new service could no longer be delivered on a cost neutral basis

    What's this all about, maintaining their own power? The fragmented nature of NHS services, along with Ccgs pulling in different directions seems to be harming the development of good care pathways.
     
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  7. NelliePledge

    NelliePledge Moderator Staff Member

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    I guess you have to start somewhere and better Dr Nacul advising GPs on how to deal with ME patients than some BPS person but really it is like having a top of the range sports car and keeping it in the garage. Hopefully the no prescribing will in practice have to be overturned once the service starts functioning. And at least writing advice to GP could be used by GP in benefits letter but this is all parsimonious to the extreme. Are Dr Bansal and Dr Chaudhri subject to the same limits when dealing with ME patients in their NHS clinics? presumably so.
     
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  8. Wonko

    Wonko Senior Member (Voting Rights)

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    Not knowing anything, at all, about the guy, it looks, from those limitations and a few other comments, as if he, or his bosses, or both, are on the other side (i.e BPS).

    eg the only reason not to prescribe is if they think prescribing would be a waste of resources and reinforce false illness beliefs (i.e. in their opinion the patient is not "ill"), the only reason not to provide a letter of support is if that could reinforce false illness beliefs etc.

    Until this is clarified I would stay away from him or his organisation as it looks a bit equine, possibly a greek horse, to me.
     
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  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Nacul is on our side. I think the diktat against actual helpful treatment is from the BPS brigade, and is presumably to limit him. If he does well, they might need to accept the biomedical model. This way, they can sabotage him from the start.
     
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  10. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    @Wonko, Louis Nacul is director of CureME, the group behind the UK ME Biobank. He's one of the good guys, research-wise.
     
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  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Worth reading the 2016 service assessment & feasibility study dr nacul was commissioned to do mentioned above. I've read a 1/4 so far. Maintaining a cost neutral service but with improvements seems to be the pressure. I don't know if simply cost, rather than any other BPS /NICE conforming is the limiting factor. I generally find reading anything to do with the NHS approach to CFS depressing. Saying that I think he was recommending a prescription service, NICE is quoted as discouraging the prescribing of medication.
     
  12. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    This is because the arrangement is essentially "a fudge"...... Suffolk Clinical Executive have clipped the wings of the commissioners and us and we are not happy bunnies......WE Fight on!
     
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  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    It's all about costs unfortunately.........
     
  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    It's about power and that ECCH are a Private limited company who answer to Company House NOT US!= NHS privitisation (Dpt of Communities & Local Government suggested Community Interest Companies- CIC.....)
     
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  16. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Please look him up- I am surprised that you know so little -about what has been going on recently with Dr Nacul and the LSHTM...........
     
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  17. Trish

    Trish Moderator Staff Member

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    It's OK @Wonko, Nucal is one of the good guys - he runs the ME/CFS Biobank and is very much on our side.
     
  18. Daisy

    Daisy Senior Member (Voting Rights)

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    Involved in the Service Development process were 7 CCGs, the Provider ECCH, and the Patient / Carer Group.

    The NHS required that a cost neutral solution be found which Dr Nacul delivered in the feasibility assessment. Then the Provider discovered further costs not initially disclosed.

    In addition there has been a historical aversion to service change in some but not all of the NHS parties involved.

    On top of that there had been NHS reorganization and the service was divested from an acute setting to a community service not subject to the FOI. So lack of transparency in decision making.

    We are very lucky that Dr Nacul expressed an interest in the first place and then maintained an interest while the NHS decided what to do (which took 18 months)

    What is being delivered may not seem much but it is much better than nothing and Dr Nacul is genuinely committed to helping patients and to biomedical research. This could be a world class service. We have the foundation.
     
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  19. Sbag

    Sbag Senior Member (Voting Rights)

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    My consultant tells my GP what to give me and my GP prescribes it. It may be something to do with funding and the prescription charges being responsibility of the GP?
     
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  20. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Is that the case in MS etc? I doubt it. If it is the system it's a stupid system but the NHS is pretty awful in illness management (rather than acute care) IMO
     

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