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

NelliePledge said:
@Suffolkres i agree with Sly this is a brilliant product for GPs and definitely needs to be put on the table at the NICE GDG to show doing the right thing is entirely possible with the right approach and materials.

I hope it is ok to give some constructive feedback. My last job was making web content on some pretty technical topics as user friendly as possible. Reading Appendix 1, which is for patients to fill in, i feel the language could benefit from being more plain English to be accessible. We are used to the terminology around ME but I think people new to ME may struggle with some of the wording. Also when writing for a general audience it helps to bear in mind that to make their content accessible a lot of organisations work to a reading age of around 9. https://contentdesign.london/reading/specifying-a-reading-age-for-web-content/.
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Thanks and all feedback very welcome.

The Appendix one is straight from the Canadian Consensus Criteria.
It is their verbatim copy ( copyrighted) -The Canadian Consensus Criteria (CCC) are a proposed clinical criteria for ME/CFS, published in 2003, of which I have an original copy (this also explores Gulf War Syndrome within the papers).

I have repeatedly used this A4 sheet with family and support members and more recently, as part of of new service referral process. I have asked that this sheet is used and filled in over time with scores noted. It has been quite illuminating and simple.....

I used it with very reluctant Hubble to confront his difficulty in being objective about symptoms, which he finds very difficult to face.
More importantly, it eased the consultation with GP who would more usually say, "How are you today? So what is the problem? Followed by "How can I help today?"

Slapping a "here's one I prepared earlier"..., I find helps defuse the tension and allows something constructive to be discussed in a 10 GP minute slot.

I also filled in the charts scoring 2, whilst husband scored 23.......!
Also problematic symptoms come and go so it allows a pattern to be recorded over time which is also useful.

I took this to the NICE Scoping meeting and left it with them. It was well received in my group ( chaired by Rupert Franklin) and the endo consultant attendee from Manchester particularly liked it, particularly the hierarchy bit.
 
Ok thanks @Suffolkres obviously it’s a different matter then about addressing the accessibility of the language. It does read like it’s been written by an expert. I’m happy that you and others in your group have found it useable but I still stand by my feedback that plain English would make is easier to use for a wide audience. Especially important I think if people don’t have someone supportive the can get to explain things.
 
NelliePledge said:
Ok thanks @Suffolkres obviously it’s a different matter then about addressing the accessibility of the language. It does read like it’s been written by an expert. I’m happy that you and others in your group have found it useable but I still stand by my feedback that plain English would make is easier to use for a wide audience. Especially important I think if people don’t have someone supportive the can get to explain things.
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Whilst I agree and acknowledge what you say, this also came out around the time of the "Expert Patient" initiative in the NHS.
Anyone new to ME will need to understand it's complexity quite soon and patients "wise up" re markedly fast once they start! That is often because they are confronted with HC and SC professionals confessing , "I don't know much about ME....!"
 
Suffolkres said:
Whilst I agree and acknowledge what you say, this also came out around the time of the "Expert Patient" initiative in the NHS.
Anyone new to ME will need to understand it's complexity quite soon and patients "wise up" re markedly fast once they start! That is often because they are confronted with HC and SC professionals confessing , "I don't know much about ME....!"
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Agreed that ME is complicated but that isn’t an argument for using more complicated terms to describe it if there are more straightforward ways of expressing things. I just had a look at the questionnaire used in the Baraniuk paper and that is pretty clearly based on the same approach but they’ve changed the wording somewhat. https://www.s4me.info/threads/chron...nt-2019-timbol-and-baraniuk.7602/#post-134872

This is off track so I promise not to continue this tangent
 
Merged thread

Specialist ME Clinic for Moderate & Severe patients in Suffolk suspended

Last week Suffolk CCG's contacted the Patient / Carer Group to let us have the incredibly disappointing news that the additional service set up last year and led by Dr Nacul is to be suspended.
http://nandsme.blogspot.com/2019/01/specialist-me-cfs-clinic-in-suffolk.html

No new patients are to be taken on and all existing patients are to be discharged into the care of their GP's with a Care Plan. Patients whose referrals have been accepted will be seen by Dr Nacul in the next couple of months.

Suffolk CCG's have assured us that they will explore options to identify another biomedical specialist doctor to meet the needs of moderately and severely affected patients in Suffolk. Unfortunately, as you know, there are not many such doctors available.

In both Norfolk and Suffolk problems with the ME and CFS 'community service' provided by East Coast Community Health, remain entrenched and longstanding.
 
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@Hutan , thanks for your interest. No it's not a matter of money. For years Suffolk has used the Individual Funding Request process to finance care for some patients with ME, and this has continued with Dr Nacul's service.
https://www.england.nhs.uk/publication/specialised-services-individual-funding-requests/

Unfortunately Suffolk Commissioners weren't able to let us have much information about what has happened. We do have a good working relationship with them, and they have told us as much as they are able (or know) which isn't much!
 
Just to add a personal note on this. I saw Dr Nacul through this service. The medical review was very thorough indeed, with regular followup planned. I was greatly impressed. In addition, Dr Nacul clearly has a great deal of respect for the knowledge of his patients regarding their ME. The combination of expertise, respect and compassion is sadly rare in the ME field. It was so refreshing after years of ignorance, dismissal and difficulty just trying getting help with medication to ameliorate symptoms.
 
Dr Luis Nacul appointed to new position in Canada

His membership of the NICE Guideline Development Committee will be unaffected, however unfortunately, as a result of the new appointment, he has had to step down from the Suffolk ME/CFS Specialist Service – efforts are underway to find a replacement, so that clinics in Ipswich can continue.
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https://cureme.lshtm.ac.uk/dr-luis-nacul-appointed-to-new-position/
 
Moved from this thread:
NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

Jonathan Edwards said:
I looked again at the RCs statement today and realised that it is more petulant whining than defiant denial
... how commissioning goes is likely to depend more on financial factors and local lobbying. Local lobbying for the more progressive approach that BACME seems to take may be very important.
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I think you have absolutely hit the nail on the head.

Within the Rountable minutes, Gillian Leng sent a clear message to this effect which I cut and pasted into an email to our local Improvements Contract Manager who meets wirh our Specialist ME Service Provider today, Wednesday to discuss feedback, concerns and complaints from service users about the current contracted service.

Following is a bit long.... but it's a demonstration blow by blow, of the future mountain which will be needed to climb.
All archived documents can be found documented and publically available on our blog. nandsme.blogspot.co.uk
http://nandsme.blogspot.com/p/the-story-so-far.html?m=1

1. It seems clear that senior provider managers at East Coast have been manipulating service provision and availability over past 3 years . The result being what they appear to be doing now is departing from their Standard NHS contract.
It is also very different to what they outlined they claim to do before an extensive examination in public before Joint Norfolk and Suffolk Healrh Overview and Scrutiny in 2018. This is a matter of public record. I recorded the debate and it was transcribed.
So locally, we have an established benchmark.

The provider senior OT manger clearly stated that 2007 NICE GET and CBT was not offered, nor had ever been part of the service approach.
This is despite pressure from Waveney CCG who want provider to take general fatigue mental health and now Long Covid referrals.

Suffolk are ready and willing to move forward constructively in their Commissioning Intentions under Imrovements and Transformaion.
We have a draft agreed service specification which went through due process up till a formal public notice for a tendering process to commence (2016?)

These are the key pegs within commissioning speak as well as having ME and CFS services enshrined within their Forward Long Term plans. And placed in a suitable Workstream and Pathway. E.g. Unplanned Care.

Being within local long term formal plans too is esential so matters can be debated in public at Governing Body level.
Complaints and 'Never Events' are also discussed at these meetings so any complaints about harms get an airing.

I can assure you on S4ME what will happen in Suffolk will honour NG206 especially with 'a little help from our friends' who were party to the GDC work. Expert before NICE and S4ME Roundtable attendee Jonathan and former clinical lead for Suffolk' s unmet need- Luis Ncul.

We are also revisiting Special and Exceptional Funding requests as belt braces and financial pressure in case bean counters and Suffolk GP Federation won't agree to a sensible proposal. It's horse trading at rhw end of the day.

This is vital extra financial and tactical leverage, which we used before more than 20 years ago to clearly demonstrate unmet needs and get money released to meet those needs.

This 'unmet need' was formally recorded in the first Needs Assessment for ME by Norfolk Public Health, in the UK instructed by then wonderful Director of Commissioning in 2012.

He said what had gone on before in Norfolk and Suffolk was a clear Human Rights issue in his view.

So legal instruments, Equality and Disability legislation and assessment against relevant UN Conventions may be needed too.
If we do progress matters in Suffolk and NE Essex Alliance to an appropriate clinically lead multi disciplinary service model, which includes greatest unmet need of children and severely affected...I hope it will be the icing for Gill Leng's 'retirement cake.......!?'
Proffessor Mark Baker can be sent a deserving slice too... in recognition of his identifying the so called 'ME Mafia' ......?!
 
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Moved from the NICE guideline thread

Jonathan Edwards said:
Do you know where this is from @Suffolkres ?

I agree that there are problems with information like this.

Maybe now is the time to try to bring some sense into information for ME.
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Absolutely. I note that today our Improvement manager is taking issues on board with ECCH the contracted provider.

Tomorrow, ME will be flagged for debate in December at Norfolk Health Overview and Scrutiny.

Posted across Norfolk& Suffolk;

'HEADS UP EVERYONE with something to say to Norfolk Health Overview and to your elected members! regarding Norfolk & Waveney, ECCH and ME and CFS Specialist Service Provision. and NICE recommendations! If you look at the minutes they have ME/CFS as a point... see below! Alert and notification regarding the publication of Norfolk County Council Committee Papers relating to Norfolk Health Overview and Scrutiny Committee. The Supplementary Agenda for the meeting due to be held on 4 November 2021 is now available. If you look at the minutes they have ME/CFS as a point... see below!'

I have just contacted the new HOSC chair (a former nurse) to get her appraised of the seriousness of situation and she may call a Joint Scrutiny and Health Overview approach for both Norfolk and Suffolk combined to be considered. on their Forward Work Programme
 

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