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

[Valentijn]

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/

Based on what they're saying in the ad, they seem to be implying that NICE guidelines can be adapted to local expectations and customs. So by phrasing it in those terms, they're more or less saying that the crappy parts of NICE can be ignored because they are not locally relevant or tolerated (as shown by the results of their survey of patients).

 

[Valentijn]

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

If not, a lot of ME patients might be moving there to get medical care

 

[ukxmrv]

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/

I wonder how any good clinic would be able to remain under the BACME umbrella as that advocates the NICE Guideline

http://www.bacme.info/aboutbacme/

 

[Sasha]

Based on what they're saying in the ad, they seem to be implying that NICE guidelines can be adapted to local expectations and customs. So by phrasing it in those terms, they're more or less saying that the crappy parts of NICE can be ignored because they are not locally relevant or tolerated (as shown by the results of their survey of patients).

It sounds as though they've found a bullshit mechanism ("local preferences" that are actually national, patient-wide preferences) to get round bullshit NICE guidelines. It's that sort of bureaucratic genius that we need!

 

[Sasha]

Interesting response on MEA FB from someone who sounds as though they know what they're talking about:

https://www.facebook.com/permalink.php?story_fbid=947249588666033&id=171411469583186

Link to the Needs Assessment https://docs.google.com/.../0B1KcCpwxF0UHNkpLejk4NlZ.../edit and to the Patient / Carer Website. Patients / Carers have been working for years to get to this point http://nandsme.blogspot.co.uk/ - if you browse the meeting notes you will see what a hard slog it has been.

 

[charles shepherd]

The bottom line here is that NICE basically produces GUIDANCE to doctors on how we should clinically assess and manage patients with specific conditions

At the same time we are still allowed to use what is termed our clinical judgement and have some flexibility as to what we do with our patients

Here is what my medical defence union says on following what is in a clinical guideline:
http://www.themdu.com/guidance-and-advice/case-studies/must-doctors-comply-with-guidelines

However, this balancing act can sometimes be quite challenging when, as a doctor, you do not agree with something that is in a NICE guideline - e.g. automatically offering or recommending CBT or GET to all patients with mild or moderate ME/CFS

It can be even more challenging if you are running an NHS service for a specific condition and not really following NICE guidance in a key area of management - which in the case of ME/CFS does, for example, state very clearly that everyone with mild or moderate ME/CFS should be offered CBT and GET

Where doctors can really run into trouble is if we start doing something, or prescribing something for a condition that is NOT recommended in the relevant NICE guideline - and there are various drugs (e.g. antivirals) and supplements (e.g. vitamin B12, Co-enzyme Q10, magnesium) that are NOT recommended for use in the NICE guideline on ME/CFS

Here is an example of a doctor ending up before the GMC for prescribing vitamin B12 injections for fatigue:
http://www.sunderlandecho.com/news/...e-says-patients-at-risk-as-a-result-1-6725330

Doctors also have to take into account the guidance from our medical defence organisations - which take a large bite of my income each year - when it comes to the risks of recommending or prescribing treatments that are not licensed, or not recommended by NICE etc, and then being sued if something goes wrong. The patient saying they are willing to take the risk of adverse effects occurring does not hold much water here if a case comes to court.

I have been following this patient consultation process in Norfolk and Suffolk for some time and it will be very interesting to see what happens once this consultant appointment has been made.

 

[Sasha]

Thanks, @charles shepherd - that's very interesting background.

What can we, as patients (and charities) do to get the NICE guidelines to become more sensible and/or get biomedically led ME/CFS NHS specialist services for all of us locally?

That is, what should be our next step?

Should we all be pressing to get these surveys of local need?

 

[Snowdrop]

If only the Suffolk/Norfolk group could have networked and developed (with help) this approach in a coordinated way with other groups. A more unified approach would have sent a stronger message (read harder to break) to the NHS re the NICE guidelines.

I know there will always be people who want to work within the system. Fair enough. But that way is a very slow process. Sometimes it needs help with action that steps outside the bounds. The plight of PWME is the kind of situation that warrants this since there is actual harm being done.

I hope that there is a growing voice of support for this group from many quarters and that the NHS wakes up to the fact that a) the PACE trial data is not honest and b) that CBT/GET do in fact not represent a treatment modality that is worthy of the name for an illness of this magnitude and c) that there is actual harm, although if you read the guidelines (they are so long you can guarantee they are working with spin) they hedge a great deal about how to implement this premier treatment ever so carefully--precisely because I expect they are aware of the harm.

It's such good news about this clinic. I hope it's the beginning of a trend. Woohoo!
Gratitude to all the people working so hard to create a system that actually offers hope to PWME.

 

[Maria1]

I think we should feed back our experiences as constructively as possible. My experience wasn't all negative of my local CFS service. I needed help and support coming to terms with my illness, accepting my limitations, and really learning to pace. The support that I got with that was actually really helpful but I have been shot down for saying that on here.

However, it is true that if I'd had some of my physical problems addressed by the local CFS service, I would have been in a better place more quickly, eg, nutritional and hormonal imbalances. I did feed this back to my local service but I'm not sure how much they can address the issues as it sits within the mental health trust.

Whilst we need research, the people giving the treatment on the ground aren't responsible for that.

The service told me I needed to take some iron and referred me back to my GP. I had no idea how important it was for me to raise my ferritin. I don't think the person telling me did either. It also failed to pick up vitamin d, b deficiencies and a thyroid problem. It took me another year to identify those myself. That's not good enough and easily fixable but I can't write off the help I got altogether.

I do believe that the tide is turning with what is happening in Norfolk and Suffolk.

 

[charles shepherd]

Thanks, @charles shepherd - that's very interesting background.

What can we, as patients (and charities) do to get the NICE guidelines to become more sensible and/or get biomedically led ME/CFS NHS specialist services for all of us locally?

That is, what should be our next step?

Should we all be pressing to get these surveys of local need?

I assume that you are aware of the on-going discussions and correspondence we are having with Professor Mark Baker (NICE) and Dr Martin McShane (NHS England) regarding removal of the NICE guideline on ME/CFS from the static list and having it properly revised

Minutes for Forward ME Group meeting with NHS England here:

http://www.meassociation.org.uk/2015/09/forward-me-group-minutes-of-meeting-held-on-15-july-2015/

I'm not sure what else people and local groups can do

By all means write to your MP about the NICE guideline, especially if he/she is a member of the APPG on ME, but all that will happen is that the MP writes to the DoH, which results in the standard ministerial response in support of the NICE guideline

On a more positive note I think people at a local level could make use of the fact that a local ME/CFS service is being developed which (hopefully) follows a biomedical model of causation and management

CS

 

[Snowdrop]

I needed help and support coming to terms with my illness, accepting my limitations, and really learning to pace. The support that I got with that was actually really helpful but I have been shot down for saying that on here.

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.

 

[Sasha]

I assume that you are aware of the on-going discussions and correspondence we are having with Professor Mark Baker (NICE) and Dr Martin McShane (NHS England) regarding removal of the NICE guideline on ME/CFS from the static list and having it properly revised

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.

On a more positive note I think people at a local level could make use of the fact that a local ME/CFS service is being developed which (hopefully) follows a biomedical model of causation and management

CS

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

 

[Maria1]

I'm not convinced the feedback goes nowhere. It sounds like it got somewhere in Norfolk and Suffolk.

As I understand it, NHS commissioners love outcomes, and outcomes are measured by those patient questionnaires. We can be cynical about them but they do affect service provision.

I'm not wanting an argument, I just feel it's important to speak up for a service that helped me. That doesn't mean I don't think the whole system needs changing

 

[Sasha]

As I understand it, NHS commissioners love outcomes, and outcomes are measured by those patient questionnaires. We can be cynical about them but they do affect service provision.

I was being a bit facetious earlier about bureaucracies but I think you've put your finger on it - we need to understand how a bureaucracy works and use approaches that they can recognise and deal with.

I'm not wanting an argument, I just feel it's important to speak up for a service that helped me. That doesn't mean I don't think the whole system needs changing

I also got some help (decent sleep meds) from my specialist NHS ME/CFS unit - from people who I think recognised that they were working within a stupid framework but were limited in what they could do about it - and I also think the whole system needs changing. I don't think the positions are contradictory - and I think everyone on this forum wants the system to change and wants to help change it.

I think this latest development shows that it's worthwhile focusing on how to effect that change.

 

[Snowdrop]

For the few people who are open to the possibility. It still doesn't address the bigger issue. And it certainly has been slow in coming and an uphill battle. But No point in belabouring it--clearly you see it different.

 

[Maria1]

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)

 

[Sasha]

For the few people who are open to the possibility. It still doesn't address the bigger issue. And it certainly has been slow in coming and an uphill battle. But No point in belabouring it--clearly you see it different.

I'm saying we all want a biomedical service. Isn't that what you're saying too?

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.

That was my impression too.

 

[SOC]

@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

And a US/Canandian/Australian doctor currently knowledgeable about ME/CFS and practicing in their own country would want to move to the UK and work under the NHS and NICE guidelines why? I think you are going to have to find your own specialists from among UK doctors with personal reasons to work under difficult and restrictive guidelines and regulations. I can't see Dr Kaufman or Dr Klimas willing to give up their relative freedom to treat in the US to run the risk of getting sideways of NHS. Dr Enlander is a possibility, perhaps, as he has a personal investment in the UK.

 

[jimells]

there may be people who have really wanted to set up this sort of clinic but have never had the opportunity.

Perhaps this position is being created with a specific person in mind. It sounds like it could be a ground-breaking opportunity for the right person.

 

[jimells]

Where doctors can really run into trouble is if we start doing something, or prescribing something for a condition that is NOT recommended in the relevant NICE guideline - and there are various drugs (e.g. antivirals) and supplements (e.g. vitamin B12, Co-enzyme Q10, magnesium) that are NOT recommended for use in the NICE guideline on ME/CFS

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...