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

Esther12

Senior Member
Messages
13,774
That's fine and well that you were helped to cope. But that sort of service should really be seen as an adjunct to the primary service of treatment. Much like cancer is treated and they can refer you to a service for helping cope with the disease if you wish.
But this is all that's being offered and if it is seen by the health authorities as adequate it will not be challenged or improved.

Your feedback on addressing physical problems will go nowhere until the issue of coping as the primary service is confronted.
Your desire to be strictly on the line of intransigent unfairness by continually focussing on some small positive.
Like the alcoholic parent, continually pointing out that they have a good side does nothing to confront big and real problem.


I think that the most important thing is for them to be honest and upfront with patients about what they are offering. If all they're offering is help with coping, then a lot of patients would not want to spend their time on it. When they sell it as a 'treatment' which can cure people and leads to a good percentage of people recovering then that's manipulative.
 

shahida

Senior Member
Messages
120
I suppose what I'm trying to get across is that I think that there are people open to that possibility within the existing service. @ Sasha and @ Snowdrop I'd quote you but I'm really struggling just to write right now. I so agree that these positions aren't contradictory.

People I met, working within the existing NHS service in Leeds are absolutely understanding of the fact that they are constrained by the positioning of the service within the mental health trust. And, as has been said already in this thread, by NICE guidelines.

Following on from what @charles shepherd says, could it be an idea for the local ME association to approach the local NHS Trusts at commissioning level with the news of the biomedical model being adopted in Norfolk and Suffolk. (I'm sure it's not news to the Trusts but it would be interesting to hear the formal responses at this stage)
might be risky to shout about it- the likes of 'Dr' Miller who chairs BACME would get in there and voice total opposition. he firmly believes nothing should be offered but CBT GET. maybe best to keep under the radar in that respect?
 

charles shepherd

Senior Member
Messages
2,239
Does that mean you are generally free to try whatever you like, as long as it is not on the "Not Recommended" list? Is Rituxan on that list? I'm suspecting no one ever thought to put it on the list.

I recall that Sir Simon and friends tested various treatments eons ago and rejected all of them. I wonder if that research is the basis for the "Not Recommended" list...

No - it's not quite as simple as that!

Here in the UK doctors have to reach a decision to use a drug on a number of factors:

1 Is it licensed for use in a particular condition or situation

2 Is it recommended or not recommended by NICE

3 Clinical judgement, which includes personal experience of a treatment

4 What the patient wants to do

5 Any other information on safety and efficacy

6 And sometimes the cost of the drug

The current 'not recommended' list in the NICE guideline does not include rituximab - because it was drawn up in 2007

It does, however, conclude that in our current state of knowledge immunotherapy (which would include a drug such as rituximab that destroys B cells) should not be used

This is the advice I have from my medical defence union:

http://www.themdu.com/guidance-and-advice/case-studies/must-doctors-comply-with-guidelines

CS
 
Messages
86
Location
East of England
Hi everyone

I saw this thread linked to our website stats http://nandsme.blogspot.co.uk/ so I thought I would register and comment.


There are a few factors which seem to have impacted on deviation from NICE. One is the NHS Norfolk Needs Assessment which has already been discussed, and one of the others is the involvement of the Joint (i.e. Norfolk and Suffolk) Health Overview and Scrutiny Committee. After the service was changed, without consultation, to a 'therapy led' service the Patient / Carer Group took concerns to the Joint HOSC.

It was very slow going, but finally in 2009 one of the things the Joint HOSC recommended is that the new service be acceptable to service users. The Jt HOSC also recommended that a service comparable to that delivered prior to 2005 be reinstated. Well the service delivered prior to 2005 was based in a hospital and was led by Dr Mitchell, who co-authored the ICC.
https://drive.google.com/file/d/0B1...ItZTQ2NGNjMjE3MWY5/view?ddrp=1&hl=en_US&pli=1

Also one of our Group members attends the Forward ME meetings and so was able to obtain clarification from Prof Baker that NICE does not have to be followed if it can be demonstrated that local need is not being met.
http://www.forward-me.org.uk/25th June 2014.htm

The advert for a Consultant / Specialist lead is a big step forward in acknowledging the new approach. It has been incredibly slow going, not helped by a significant hiatus whilst the NHS reorganised itself following the abolition of PCT and the establishment of CCG's. What has made things more complex is that in Norfolk and Suffolk our group was dealing with 3 PCT's, now we are dealing with 7 CCG's. However, there does seem to be a coherence of approach emerging between the CCG's in each of the old PCT areas.

A further layer of complexity is that most (although thankfully not Suffolk) have contracted out their Commissioning support out of area.

We are working within a very complex framework, which is poorly understood and which is in a constant state of flux. Different CCG's have different priorities, different ways of doing things, and different relationships with other CCG's and CCG's in other areas. Add into that financial pressures, cultural issues within the NHS regarding patient input into service development and the low profile of ME and CFS in particular and things become even more difficult.

One of our group members went to a CCG meeting where they were trumpeting about all their wonderful initiatives. Our group member asked for their thoughts about the 'transformation' programme for the ME and CFS Service. It wasn't even on their radar!

There is no doubt in my mind that if the Patient / Carer group hadn't taken the action it has, the service would have defaulted to NICE in Norfolk and Suffolk, squandering the many many years of work by Dr Mitchell. Or the service would simply have closed down, as many have, with funding diverted to more high profile LTC's.
 

Maria1

Silence speaks volumes
Messages
139
Location
UK
Hi @elliepeabody

Thank you so much for sharing this information. Its so helpful to see how this important change actually came about, and how long it took.

I have some questions to ask but I don't have the wherewithal right now. I wanted to say thank you for posting and also for the invaluable work your group has done.

There is no doubt in my mind that if the Patient / Carer group hadn't taken the action it has, the service would have defaulted to NICE in Norfolk and Suffolk, squandering the many many years of work by Dr Mitchell. Or the service would simply have closed down, as many have, with funding diverted to more high profile LTC's.

My local CFS service sits within the Mental Health Trust. It's not great, to say the least, but it kept me afloat when I first became ill. It could help people much, much more if it moved to a biomedical service, BUT I worry about people who wouldn't get ANY support if there was nothing.

If I had half a brain I'd love to pick yours but I'm addled right now!

Thanks again for taking the time and energy to post.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
"My local CFS service sits within the Mental Health Trust. It's not great, to say the least, but it kept me afloat when I first became ill. It could help people much, much more if it moved to a biomedical service, BUT I worry about people who wouldn't get ANY support if there was nothing."

Those of us who have been harmed by the clinics or have done CBT and GET to no avail ARE getting nothing.

It's not a theoretical situation it is actually happening.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Welcome to the forums, @elliepeabody, and congratulations on what you've achieved in Suffolk and Norfolk. As you can see, it's very inspiring for the rest of us!

The structural issues sound like such a mess. It sounds as though this is key:

Also one of our Group members attends the Forward ME meetings and so was able to obtain clarification from Prof Baker that NICE does not have to be followed if it can be demonstrated that local need is not being met.
http://www.forward-me.org.uk/25th June 2014.htm

Do you have any recommendations for how other patients could set about doing this in their own areas? Can patients do this on their own (or as a group), or do they really need some sort of NHS-based champion to lead, advise, and/or be a point of contact?
 
Messages
86
Location
East of England
Welcome to the forums, @elliepeabody, and congratulations on what you've achieved in Suffolk and Norfolk. As you can see, it's very inspiring for the rest of us!

The structural issues sound like such a mess. It sounds as though this is key:

Do you have any recommendations for how other patients could set about doing this in their own areas? Can patients do this on their own (or as a group), or do they really need some sort of NHS-based champion to lead, advise, and/or be a point of contact?

Thank you for the kind comments Sasha and Maria.

It is very hard to advise a way forward for other groups as things are likely to be so different in different areas. This post is a bit of a 'stream of consciousness' with points in not in any particular order.

If you can find someone within the NHS to advise that would be great, but it is very difficult to get people interested in ME. I have found that those most likely to show an interest are those with family or friends affected by ME.

Start out by deciding in detail what you want to achieve, what is most important, what will be easiest to implement, and what the cost implications are likely to be. Commissioners are most likely to go for 'quick wins' first.

It will be likely that there will be considerable vested interest in maintaining the status quo. Change will cost the NHS in terms of time, money and change of approach by clinical staff.

It is becoming increasingly clear that financial issues are more important than ever. At the moment 'cost neutral' seems to be the buzz word. So if you can propose changes that are cost neutral you may have more luck getting them implemented. Actually this shouldn't be as hard as it initially sounds. CBT / GET is very expensive to deliver, as opposed to say advice regarding pacing, medication for symptom control and ongoing reviews. The important thing is to get the approach right and you can then build on that.

What you are doing will be a process rather than a discrete event.

This is very important - You will also need to decide on an approach with regards to NICE and how clinical leadership and governance will be addressed if you are proposing a departure from NICE. (Charles' posts above put this in a bit more context) Again, it is vital to get your ducks in a row regarding this before you approach Commissioners / CCG's.

We were very lucky in that we had Dr Mitchell's legacy to build on and a precedent had already been set. Still, for other areas I would say that it is very important to get your ducks in a row with regard to what patients want in your area. Local support groups are likely to have a data base of pwme locally and you may find it helpful to work with them to produce a survey so you can get a reasonable number of responses (at least in the 100's). Plus social media is now much more mature than it was when we undertook our survey in 2009 so it is easier to get the word out and obtain more responses. I suspect many local NHS ME and CFS Services have never actually asked pwme what kind of service they want.

You will need to be aware of the area covered by your local service, which CCG's commission the service, and how the commissioning is structured. Building personal links with Commissioners, and probably also doctors in your local CCG's is key to making progress. We have found it very important to be circumspect about what we say publicly about what is going on, however unhappy we might be about particular aspects of what is happening. It is just as important to manage expectations, and don't count your chickens to the wider community until something is a done deal.

You will probably find that your local CCG's have public meetings and there will be an opportunity to ask questions and network afterwards. One of the aims of CCG's is that they are supposed to be more responsive to local need. So have a look at your CCG websites, see what they say and tailor your approach to the CCG's stated aims.

Ask to see a copy of the past couple of years patient surveys that the Provider should have undertaken as part of demonstrating they are meeting the key performance indicators in their contract. This will give you a feel for how the Provider operates and what Commissioning is asking of them. I would like to know what the KPI's the Provider is being asked to meet. You will probably find they are quantitative (weeks from referral to appointment) rather than qualitative (functional outcomes).

If you can get your local Healthwatch to support you that will help although we have found they are inadequately resourced.

Find out where the local service has been placed - Mental health, community services, long term conditions etc. These streams will have different priorities and different ways of doing things. It is likely that they will also have someone within the CCG who is responsible for that particular work-stream, and that may be someone to approach.

Bear in mind that you will be attempting to implement significant cultural change and that involving patients / carers in service development is cultural change in itself. This document about cultural change in social care produced by the University of Leeds is well worth a read. http://www.scie.org.uk/publications/knowledgereviews/kr17.asp
You can register for a free account to access the pdf.

You will need to have a group of committed Patients / Carers who have strengths in different areas, trust each other, work well together, who are in it for the long haul, and who are prepared to accept that they will be criticised for working within what is a dysfunctional system. Some people may pop up, cause havoc, then drop out of the process.

Be prepared to be met with intransigence. When you get to the point of having some sort of Patient / Carer group meeting with the NHS to discuss service development make sure you agree on terms of reference before you start, and that meetings are properly minuted, and that minutes are agreed.

IME getting any change within the NHS is an incredibly slow process and is likely to take years. It is a marathon not a sprint.

As I said in my previous post, the way the NHS is set up is very complex indeed, and it is a constant challenge to understand what is pertinent and what is not. You will be working on shifting sands.

Have a look at the websites for your local Health Overview and Scrutiny Committees and find out how they operate. Find out what you will need to do to get attempts to improve your service on the Forward Plan for the Committee to review - it's likely you will have to go through a complaints process with the Provider first.

Finally meeting with Commissioners and / or CCG's and waving the ICC in front of them is unlikely to cut any ice.

The above are all general points which will not all necessarily apply. HTH
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@elliepeabody, you have some essential info and insights that I think needs to be shared nationally.
Do you have a blog that contains any of this info?
If you were to be able to share this info widely, I'm sure it could prove to be very useful to other groups who may wish to follow your lead.
Otherwise perhaps your work could be highlighted and shared by Charles Shepherd via the ME Association, or the Forward ME Group, or the parliamentary group?

Not that I wish to put any pressure on you.. I'm just thinking how useful this info could prove to be, either to inspire others to follow your lead, or to help inform people who wish to follow your lead.

Thanks so much for what you've done in Norfolk/Suffolk. (It sounds like an enormous amount of work.)

It would be really nice to think that this could be the beginning of a movement across the NHS throughout country.
 
Messages
86
Location
East of England
@elliepeabody, you have some essential info and insights that I think needs to be shared nationally.
Do you have a blog that contains any of this info?
If you were to be able to share this info widely, I'm sure it could prove to be very useful to other groups who may wish to follow your lead.
Otherwise perhaps your work could be highlighted and shared by Charles Shepherd via the ME Association, or the Forward ME Group, or the parliamentary group?

Not that I wish to put any pressure on you.. I'm just thinking how useful this info could prove to be, either to inspire others to follow your lead, or to help inform people who wish to follow your lead.

Thanks so much for what you've done in Norfolk/Suffolk. (It sounds like an enormous amount of work.)

It would be really nice to think that this could be the beginning of a movement across the NHS throughout country.

Hi Bob

Thanks for responding to my rather lengthy post.

Sorry, I didn't set up a blog to detail what worked and what didn't. I got involved in this project in 2007 (some of our group have been involved for much longer) and I simply didn't expect it to be so difficult, complex and to go on so long.

Our group has set up a website with minutes of meetings and made important documents available for download - Needs Assessment, 2009 Patient Survey, NHS Patient Survey etc. The idea was to keep local patients / carers informed about what was going on, rather than to analyse what was happening. The minutes are pretty dry stuff, but you can, to a certain extent, read between the lines, to get a flavour of the tone of meetings. It has been incredibly hard work trying to keep on top of what is of it all. http://nandsme.blogspot.co.uk/

Charles at the MEA has been very supportive of what we have been doing, and one of our members is on the Forward ME Group, so they are also aware what is going on (albeit slowly) in Norfolk and Suffolk.

We have deliberately kept things low key. We didn't want to raise hopes either locally or nationally without having a good chance of delivering a degree of change in the right direction.

The NHS has committed to a 'partnership' working with Patients / Carers to progress change. This works both ways. We agree with the NHS before minutes and other documents (unless already in the public domain) are uploaded to our website. Some at the NHS have been very supportive, and have hung in there with us for years in very difficult circumstances, and for this we are very grateful indeed. Some less so. It is a difficult balance between keeping people informed regarding progress and jeopardising our working relationship with the NHS which currently enables us to have frank, and in some cases confidential, discussions at meetings.

Still, I think that the NHS should be congratulated for allowing us to upload minutes of meetings and more recently their latest patient survey to our website. We are also working with the NHS to co-produce documents used by the service.

In addition there are cost pressures, staffing issues, structural difficulties, of which we are only tangentially aware, but which impact on decisions made by the NHS. Things have changed a lot since this all started for me since 2007, and what worked then may not work now. The actual people involved in any process, both on the Patient / Carer side and the NHS makes a massive difference to whether or not progress can be achieved.

Still, I am more than happy to answer any questions that anyone has, and as you say it would be great if groups in other areas could use what we have done to work towards delivery of more appropriate services for pwme.

A word of caution. We are not there yet. Not by a fair way. We are at a critical point now and progress could stall.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,232
Location
Cornwall, UK
Yes, and it sounded a rather headbanging experience. I'm grateful to you and the other charities for pursuing this - it seems as though there is a long way to go.

There must surely be something that we can do... I wish I was sufficiently well-informed to know what that was!

A few years ago there was a call by Anglia ME Action for people to write to Parliament demanding a broad-ranging Parliamentary Select-Committee inquiry into UK Government policy on ME.

This pdf tells you about it.

I don't know if it had much, if any, effect.
 

Maria1

Silence speaks volumes
Messages
139
Location
UK
@Sasha- I think you're right. It needs an 'in' in the local set up followed by dedication and persistence to keep on going.

A huge amount of work. Imagine the pay off though?

I think finding the 'in' isn't necessarily so far out of our reach. I had some conversations with staff involved in my local CFS service and they did seem frustrated by the NICE guidance. If I was well enough I'd start by going back to them and having some 'casual' conversations, to get a better understanding of what we are working with.

GPs at my surgery have also said that it doesn't help that the service sits with the Mental Health Trust (that was said to me without any discussion or prompting on my part!). My surgery is/was very active in the PCT. I think that the PCT is now the CCG. I've had a quick google for my local CCG and it looks as if I could get involved quite easily there. They recruit 'Patient Leaders' to sit on commissioning panels.

My career background is in Health and Social care and this would be the sort of thing I'd love to be involved in locally. However, if I could do any of this I'd be working, and I can't even do that right now. So I'll just send my well fantasy person out there in my little head to be doing all this. A lot easier that way I'm sure
 
Last edited:

ukxmrv

Senior Member
Messages
4,413
Location
London
There are PWME getting involved locally by joining their local Patient Participation Groups (at their GP's clinics) and also getting involved with the new CCG's.

It's the usual problem of PWME being too disabled to be able to participate in these groups as much as they are able to.

If more family members helped it could make a big difference.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I imagine that in a very few short years (2018!) if rtx pans out then the pressure on the specialist ME/CFS clinics to change will be top-down and so the bottom-up slog that PWME have had to go through for Suffolk and Norfolk - if it takes years - wouldn't be worth it, but certainly some prodding and/or contact-making at this stage would help in the long term.

I think the momentum of science is very much on our side now and I hope we'll see change in all these specialist units at some point in the next very few years. I don't see how they'll be able to resist it - it's just a matter of when, not if.

And I agree that there are probably loads of personnel in these units who are frustrated by the NICE guidelines.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
We have deliberately kept things low key. We didn't want to raise hopes either locally or nationally without having a good chance of delivering a degree of change in the right direction.
That's probably very wise for a number of reasons. You might get the psychological lobby poking their noses in and threatening legal challenges to scare off the health trust, if they got wind of the plans in advance. Probably best to keep it low key until it's established.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
And I agree that there are probably loads of personnel in these units who are frustrated by the NICE guidelines.

I don't know if this is very true (as in "loads) or if it's something staff tell patients to try and gain their trust or too explain away the poor services.

Heard of patients being told when surveys come around that the clinics are doing all that they can under NICE and so should be marked highly in patient satisfaction because of this.

Dr Terry Mitchell ran his clinic away from NICE Guidelines such as using other diagnostic criteria (he gave out a handout when he spoke at the APPG) and nothing happened to him. The DWP or NICE didn't close him down as far as I know. Maybe someone else know if he was leaned on.

They could be running their clinics differently if they wanted to and using BACME to influence change to NICE.

They are not speaking out like Dr Mitchell did at the APPG. My suspicion is that these are weasel words.
 
Messages
1
Location
Suffolk
"Thanks so much for what you've done in Norfolk/Suffolk..........."It sounds like an enormous amount of work.".......

I would suggest that to be an understatement!....
We are getting there, but please be advised, we are not there yet!
What Ellie describes amounts to about 10-15 years of work by individuals, groups, charities, as well as the late, inimitable Dr Terry Mitchell.
It has involved his vision and aspiration, not ours, for a local, regional and national service. It has involved a campaigning and lobbying appoach from a whole cohort of local Norfok and Suffolk people; endless meetings and debates....... and some casualities formed along the way.
Thanks must be given to organisations like Norfolk LINk and their lead officer at the time- before they became too effective for the powers that be, that is, and were disbanded; Tina was wonderful!-
Others have been committed to the cause too - NHS Commissioning officers and Directors, Public Health consultants and local politicians (elected members) and Local Authority scrutiny officers via the Health Overview and Scrutiny Committees, too have been so helpful. Thank you!
Local press and some very helpful, dedicated politicians have also played an enormous part. Thank you both to ex MPs Ian Gibson and Tony Wright ( who set up the APPG ), in particular......

Getting to this point has been hard, stressful and at times personally challenging, upsetting and painful; and I would not wish it on any other groups.

Above all, it has involved a local, regional and national approach from local Norfok and Suffolk people. Charities have been set up on the back of this like the enormously successful Invest in ME, who in 2005 found some of the existing charity effort lacking or counterproductive.

BUT, caution is needed as the proof of the pudding will be in the eating! We must not slacken our resolve and effort at this critical time one little bit. We must not assume we are there yet.
We have at last been given a "chance" and we must all embrace it with open arms and hope to make this what we want it to be; for Suffolk and Norfolk, Gt Yarmouth and Waveney, for the Eastern region and beyond. By escaling interest and getting support, and forum and media coverage, we may embarass the "powers that be" ( ie CCGs) not to renigade on promises and committment ever again!

Above all, we must have some hope that the late Doctor Terry Mitchell's vision will at last have some hope of being realised after he was treated so shamefully by the PCTs in 2005 and who he described at a 2007 Scrutiny meeting as having "squandered his professional expertise". If the service does deliver, it will be Terry's legacy not ours.
Check out the Norfolk and Suffolk blog for developments!
http://nandsme.blogspot.co.uk/
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hard to know, @ukxmrv. My impression at the centre I was 'treated' at years ago was that the people I dealt with were sceptical about CBT and GET and had found ways to avoid imposing it on people while still paying lipservice to it.

It's hard to know whether they'd be likely to lose their jobs if they spoke out. We've heard of researchers losing their places for showing a research interest in ME.

I take your point, but I'd be surprised if there weren't a lot of NHS people looking for a chance to do things differently. Time will tell, I suppose.
 
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