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UK: Norfolk & Suffolk NHS ME/CFS center goes biomedical!!!

Sasha

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Is this a first?

This link is courtesy of the MEA on FB, and is a job ad for a new consultant:

https://www.jobs.nhs.uk/xi/vacancy/747209457f9f1ce6f8860805e6e7b78e/?vac_ref=913924710

East Coast Community Healthcare CIC said:
Applications are invited for a Consultant/Specialist to Lead the Norfolk and Suffolk ME and CFS Specialist Service. We are looking for expressions of interest for the position of supporting Consultant/Specialist to the ME and CFS Service.

Any Consultant/Specialist expressing an interest must have a proven level of expertise and past clinical experience dealing with ME and CFS. This must include experience of dealing with the most severely affected.

Consultant disciplines which will be considered can be wide ranging; e.g. from Haematology, Rheumatology, Neurology, Immunology, Allergy, Endocrinology.


[...]

We are currently embarking on a major “Transformation” programme for the ME and CFS Service in collaboration with both Norfolk and Suffolk commissioners and our regional Patient Group that aims to change the delivery of our existing multi-disciplinary ME and CFS Service. The transformation programme is delivering change from a 'therapy led' service to a multi-disciplinary consultant led service which takes a biomedical approach. This transformation is based on the recommendations of a comprehensive Needs Assessment carried out by NHS Norfolk in 2011.

The Consultant led Service will provide diagnosis support, ongoing care and domiciliary support to both children and adults, including the severely affected 25% of patients, across the whole of Norfolk and Suffolk. This is in line with demonstrated needs identified in a comprehensive Needs Assessment published in March 2012 by the Norfolk Public Health Consultant.

The service will offer advice on a wide range of symptom control models, access to aids, equipment and other modes of support provided both in-house and via outward referral to specialist services.

The expansion of our service provision aims to increase the level of specialist support, steer and management available for our patients and staff.

In addition to the above we, intend to expand our involvement within research and this post will be pivotal to that development. Clinicians with a proven track record in patient supported ME research are vital to the new service.

The Consultant Role and expertise.

  • Understand the national and local priorities and policies relevant to the ME and CFS Service. NICE guidance having been considered would adopt a local needs perspective and approach which may accord may accord with locally acceptable aspects of the NICE Guidance.
  • Work with CCG’s to deliver the service in line with the recent agreed Needs Assessment, and the agreed local strategic vision.
  • Oversee the assessment and development of the ME and CFS care pathway.
  • Make recommendations regarding the management of individual cases to the referring medical practitioners, particularly for those patients who are complex and /or severely affected.
  • Work as part of a multidisciplinary team to provide clinical leadership and supervision to the clinical team.
  • Take a service lead in relation to biomedical research by developing the appropriate links with external bodies / academia etc.
  • Participate in the teaching and accredited training of other healthcare professionals, including local GPS
  • Provide advice for related professionals such as Social Workers and educationalists working with patients with ME and CFS in the local CCG network.

:balloons::balloons::balloons:

Lucky Suffolk and Norfolk! I wonder how this came about?

@charles shepherd, how can we get this happening nationally?
 
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Sasha

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My only worry now is whether there are any doctors who are qualified! Who has got a proven track record in patient-supported (presumably not psychiatric, then) ME research and proven expertise in dealing with ME patients, including the severely affected?

Is there anybody in the whole UK?
 

Sidereal

Senior Member
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My only worry now is whether there are any doctors who are qualified! Who has got a proven track record in patient-supported (presumably not psychiatric, then) ME research and proven expertise in dealing with ME patients, including the severely affected?

Is there anybody in the whole UK?

That was my first thought. Nonetheless, great (and shocking) news.
 

Bob

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That's great news! This could catch on!

So they're taking a local needs approach rather than using the NICE guidelines as a template.
My only worry now is whether there are any doctors who are qualified! Who has got a proven track record in patient-supported (presumably not psychiatric, then) ME research and proven expertise in dealing with ME patients, including the severely affected?

Is there anybody in the whole UK?
I think Dr Bansal has a biomedical attitude? Plus doesn't Julia Newton have a clinic attached to her research facility? So there are probably at least a few appropriate clinical leaders. And (as @A.B. says) there may be people who have really wanted to set up this sort of clinic but have never had the opportunity.
 
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Sasha

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That's good news!

So they're taking a local needs approach rather than using the NICE guidelines as a template.

I think Dr Bansal has a biomedical attitude. Plus doesn't Julia Newton have a clinic attached to her research facility? So there are probably at least a few appropriate clinical leaders. And there maybe people who have really wanted to set up this sort of clinic but have never had the opportunity.

But they both already head up their own NHS ME/CFS units. If they move to Norfolk, that would leave their own units in the lurch, unless they're so constrained by the NICE model there that they'd be better off moving.

I wonder if this Suffolk/Norfolk thing could drive the wedge into the national set-up and the other centres could go down like dominoes to the biomedical approach (mixed metaphors, but you know what I mean).

I wonder how the rest of us use this 'local needs' mechanism to stop the poorly-done NICE guidelines being applied to us.
 

Sasha

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There are probably doctors, they just had to keep a low profile because going against the party line can bring problems.

But if they've got a low profile, they won't have the research track record.
 

justy

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M.E patients in East Anglia are obviously practising the dark arts :)

East Anglia is also the focus for the UK centre for biomedical research into M.E

http://www.investinme.org/Research - ME Institute.htm

Although perhaps the two are related?

As to who could feasibly take this position - I have no idea who has the right credentials AND wants to give up their current position and move to East Anglia.
 

Effi

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Europe
Consultant disciplines which will be considered can be wide ranging; e.g. from Haematology, Rheumatology, Neurology, Immunology, Allergy, Endocrinology.
Now this is refreshing! :thumbsup:
My only worry now is whether there are any doctors who are qualified!
Well they have to start somewhere... I think if the above mentioned specialties would work together towards the same cause, a lot of good things could happen! Right now you can go to either an immunologist, OR a neurologist, OR an endocrinologist. If they can work together within an official framework it could get really interesting I think. Let's not forget it's a complex (systemic) illness, so we might always need more than one specialty. At least until we fully understand the disease process.

Hm I'm feeling strangely hopeful all of a sudden... :redface:
 

Bob

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But they both already head up their own NHS ME/CFS units. If they move to Norfolk, that would leave their own units in the lurch, unless they're so constrained by the NICE model there that they'd be better off moving.
I wasn't suggesting that any specific clinical leaders would want to move to East Anglia, but just thinking that there might be a number of clinical leaders (some of whom we might be unaware of) who may have been waiting for this opportunity.

I wonder if this Suffolk/Norfolk thing could drive the wedge into the national set-up and the other centres could go down like dominoes to the biomedical approach (mixed metaphors, but you know what I mean).
That's what I was thinking. It could catch on quickly!

I wonder if the new NHS organisational rules allows people outside East Anglia be referred to this clinic?
 
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msf

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What does this mean for treatment though? My guess is nothing, for the moment anyway.
 

Sasha

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What does this mean for treatment though? My guess is nothing, for the moment anyway.

Well, one thing it could mean immediately for treatment would be testing PWME for OI as standard and treating them for that.

And it could mean having proper cohorts for biomedical studies - such as the one we all want now to replicate the new work on antibodies.
 

Cheshire

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Does someone know a bit about the history of this incredible decision? What was the role of patients' organisations? Are these centers yet less oriented toward CBT / GET than others?
 

Sasha

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What does this mean for treatment though? My guess is nothing, for the moment anyway.

Another thing that they could do is look at having people pace on an evidence-based basis, i.e. in line with the CPET studies from Workwell that indicate that we should be staying below our aerobic thresholds as much as possible.
 

Battery Muncher

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@Sasha

We could recruit from abroad? I think the NHS seems to recruit overseas doctors nowadays, so maybe someone in the USA/ Canada/ Australia etc will fit the bill
 

justy

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so sorry not to have known more about Dr Terry Mitchell when he was alive - sounds like a lovely man.
 

shahida

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But aren't these clinics bound by the NICE guidelines? If the likes of Dr A Miller get wind of this he could cause trouble- he has said they should offer nothing but CBT & GET/