Can ME/CFS patients in the UK choose who they go to see on the NHS?

[Purple]

What is astounding that the NHS is the biggest employer in Europe - yet quarter of a million of severely ill people are left with virtually no treatment, and often with no access to basic check-ups that are standard in other European countries.

 

[Jonathan Edwards]

It is better for me not to comment on individual people's problems but I see no reason not to take your results to the GP, Justy. If there is evidence for infection or abnormalities of the immune system for which there is validated treatment, that will be provided on the NHS, even if things ARE slow. And if a CT scan report has not come back after a month then the GP should send a formal complaint to the hospital with a copy to you. Apart from anything else you should personally have received an explanation of the result from your hospital consultant. It is a requirement of the service now. As I indicated, the system is so under-resourced it no longer functions properly, but things like a missing scan report are inexcusable and need sorting out. People need to complain, and loudly, but they also need to be prepared to vote for the money needed to run a service, otherwise they cannot really expect to get any results.

 

[Sasha]

Further to my rant on the matter a couple of posts ago, I think that the current situation with Ebola shows that it's not always the case that, in the absence of strong RCT evidence, it makes sense to leave patients untreated. An experimental drug that hasn't been tested for safety or efficacy has been used on three people so far.

Presumably this is because the alternative is almost certain death (the death rate is about 90%) but it shows that when the stakes are high enough, doctors are willing to take risks.

For some (not all) doctors who haven't had decades of lived experience of ME, the stakes might not seem high enough but to those of us who've lived it, the stakes are very high indeed. I'd like to see the choice about taking risks tip more towards the patient than it currently appears to be.

 

[Jonathan Edwards]

Shortly before the last general election, the Libdem leader wrote this letter to a Myalgic encephalomyelitis sufferer:

Since becoming deputy prime minister he has been strangely silent on the matter.

I have to say that at least with the Conservatives you knew what they were offering - as little government funded healthcare as possible. But Mr Clegg's position has left me dumbfounded. At least there HAS been an MRC initiative with a focus on ME but I have no idea if that has anything to do with any political party.

I think the 'fact' that the NHS is the biggest employer is a bit of a red herring, Purple. The government funded health care systems in other European countries must spend much more, they just don't call it 'one employer'. The reality is that we spend less than almost anyone - so we get less. We could also do with abolishing the distinction between GP and hospital - just have everything dealt with by the most appropriate person. Most of the waste of money in the NHS is one half (GPs) spending money on trying not to spend money on sending people to the other half (hospitals) and the other half paying vast numbers of accountants. And nobody should be treated by a 'generalist' any more. Medicine is too complicated.

 

[justy]

@Sasha interesting that you mention immunoglobulin - my specialist in Europe would like me to receive IVIG so that I will have less infections and give my body a chance to heal from the bacterial infections with antibiotics.

Unfortunately, if you have a diagnosis of M.E and you do not have evidence for example of Primary immune deficiency, then you will not receive these kinds of treatments on the NHS - even if they may be of some benefit (as Dr Bansai suggests).

@Jonathan Edwards I understand entirely that you cannot be in the position of commenting on individuals circumstances, and of course I could make complaints but for severely or moderately ill and housebound patients who are dependant on carers to go out and take part in the world this kind of thing takes more energy than we have. Dr's wont make home visits to patients and when one only has one family member to rely on, who works full time it is impossible to really follow up these kinds of issues. - not a rant at you- just pointing out that the reality of dealing with doctors, benefits systems, hospitals etc is beyond the capabilities of most of us - mostly we just give up and don't bother - even when new or unrelated symptoms arise.

 

[Cheshire]

Just a naive question: are NHS doctors paid by the NHS or by the patients?

 

[Sasha]

Just a naive question: are NHS doctors paid by the NHS or by the patients?

By the NHS, which is paid out of taxes.

 

[Marco]

I People need to complain, and loudly, but they also need to be prepared to vote for the money needed to run a service, otherwise they cannot really expect to get any results.

Assuming of course that you know which party is best placed to provide the best service at a cost that taxpayers are willing to pay and that the economy can sustain. People do need to complain but past experience suggests that there is internal and external pressure to ensure that the NHS is above criticism.

Over here (France) health provision is pretty excellent (excepting 'difficult' conditions such as autism and ME/CFS to name a few) but the cost is crippling French business and the economy in general. Plus its far from 'free at the point of delivery' or thereafter.

What I find frustrating about the debate around this issue is the assumption that you can't be pro the principle of the NHS while also critical of its performance, management, funding model and exposure to 'market forces'.

Minor rant aside, back home, Belfast City Hospital used to have a dedicated 'Chronic Fatigue' clinic that in reality was just there to screen for other (potentially more immediately threatening) conditions that could lead to fatigue (not a bad idea). Thereafter, a clean sheet lead to referral back to the GP with a 'confirmation' of CFS and no treatment.

As has already been mentioned, choice within the NHS (or any other health system) is fairly irrelevant while there is no established pathology or proven treatments. I gave up decades ago of even obtaining some symptom relief that might have kept me in the workplace.

That isn't the fault of the system or the doctors - its just a reflection of how little we currently know.

C'est la vie.

 

[Cheshire]

Thanks Sasha.

What is astounding that the NHS is the biggest employer in Europe - yet quarter of a million of severely ill people are left with virtually no treatment, and often with no access to basic check-ups that are standard in other European countries.

In France the system is both socialized and liberal at the same time.

The vast majority of GPs are working in private practices, but the national social security reimburses nearly all the price of the consultation.

And physicians working in hospitals are paid by the hospitals (mostly funded by taxes).


So the "ministère de la Santé" is not employing that much people, and to compare to the English system one would have to add ministry's employees + money spent by the national security + hospital budgets + community consultations...


So I think you have to compare this amount of public money spent for one patient in several countries to speak of the same thing.

As Marco just said, it's finaly pretty expensive, and I'm not sure UK is spending more than France.

 

[MeSci]

NHS clinician seems to be willing to join me and allow me to take those risks.

I take your point that at present, we don't have strong, large RCTs showing evidence for medical treatments of ME. However, in the absence of such trials, I think it's an enormous waste of patients' lives not to take a risk, especially with treatments that are low-risk. Would it not make sense for the NHS to trial medical therapies on patients, with full informed consent, not necessarily in RCTs but simply auditing the results that they get (possibly with a waiting-list control group), to inform the choice of therapies suitable for investigation by RCTs?

It seems to me as though the NHS has forgotten that there's a discovery stage before an RCT ever happens. Fluge and Mella had a serendipitous observation, and that led them to an RCT. But because no-one in the NHS will take a risk, they're killing that discovery phase stone dead before it has even started.

My GP constantly tells me that there aren't any RCTs that back up any of my treatment suggestions and I constantly tell him that I will quite literally be an old woman if we wait for them. It seems to me that ME is in the grip of a perverted form of evidence-based medicine: "never act unless there is evidence, even if it means leaving severely disabled patients untreated for 30 years".

I don't know what it is that is standing in the way of the kind of experimentation that I'm suggesting. Patients are on the threshold of being able to pool results of self-experimentation by using data-sharing platforms such as OMI's OpenMedNet. Why isn't the NHS doing this? Is it "first do no harm", or "first don't get sued" or "first don't get sacked"? I really don't get it.

I think that there are plans to start using the vast pool of clinical data represented by medical records for research, but there are obstacles.

• How to anonymise it
• How it will be used
• Who will own/use it.
• Poorly-kept and missing records
• Poor quality of data due to confounding factors, diagnostic errors, etc.

But it might still be possible to get some clues from mining such records.

One of my main concerns is that the current government seems keen to hand the whole thing over to private companies, which may turn out to be 'the usual suspects': ATOS, G4S, Serco, Capita, drug companies...but then the public sector has shrunk to such a degree, and funding is continuing to shrink - who else will do it?

 

[Jonathan Edwards]

Further to my rant on the matter a couple of posts ago, I think that the current situation with Ebola shows that it's not always the case that, in the absence of strong RCT evidence, it makes sense to leave patients untreated. An experimental drug that hasn't been tested for safety or efficacy has been used on three people so far.

Presumably this is because the alternative is almost certain death (the death rate is about 90%) but it shows that when the stakes are high enough, doctors are willing to take risks.

For some (not all) doctors who haven't had decades of lived experience of ME, the stakes might not seem high enough but to those of us who've lived it, the stakes are very high indeed. I'd like to see the choice about taking risks tip more towards the patient than it currently appears to be.

I very much agree with the spirit of that Sasha, but my 'rant', since we are all ranting here, would be to get POPR (people on PR) to really get the arguments tight. The great thing about POPR is that they do argue. Doctors tend to drift around like flocks of sheep. I realise that POPR need to rant, and there's no harm in that, but I would also be interested to see just how high PR can raise its game. There are some very bright and very knowledgeable POPR. I see no reason why the answer to the question 'who knows most about ME' shouldn't be, not 'Professor whatsisname and the group at the Mayo Clinic' but 'those guys on PR - they are the one's who have thought it through'. So instead of this 'disappointing response from some members of the ME community, sniff sniff' reaction the idea is to see the 'experts' looking sheepish (appropriately) and going to read the papers they couldn't be bothered to look up. To do that, in simple terms, the key is not to overstate the case -at least at the interface with other media, even if banging on about something on PR itself is a good way to get people thinking.

Ebola is not really the same is it? You cannot do RCTs on very rare epidemic diseases when you only have 3 doses of treatment. And I think these were mixtures of monoclonal antibodies to Ebola - so there was little or no doubt about the justification for using the doses. For ME as I see it there just isn't the evidence yet. The Norwegians have taken your case to heart and tried something. They were brave to do so with so little to go on. If others have ideas about treatments they should be doing proper trials too surely? Try something on five people and then study it properly. If an RCT was easy enough to do it should have been done. That you cannot really argue against. When I treated 5 RA patients without any controls I was told by an eminent oncologist that I was wasting everybody's time. He changed his mind when he saw the results but no way was I going to continue without setting up a proper study at that point.

If we do not understand a disease any treatment that has a chance of a major beneficial effect also has a chance of a major adverse effect - otherwise it's homeopathy. Taking on that risk is something I have done and there is no way I would ask a patient to take responsibility for it. Seeing what I have of adverse effects of drugs nobody knew about I just don't think it is on. But I take the point that patients need to be more involved in decision making.

 

[Sasha]

I think that there are plans to start using the vast pool of clinical data represented by medical records for research, but there are obstacles.

• How to anonymise it
• How it will be used
• Who will own/use it.
• Poorly-kept and missing records
• Poor quality of data due to confounding factors, diagnostic errors, etc.

But it might still be possible to get some clues from mining such records.

One of my main concerns is that the current government seems keen to hand the whole thing over to private companies, which may turn out to be 'the usual suspects': ATOS, G4S, Serco, Capita, drug companies...but then the public sector has shrunk to such a degree, and funding is continuing to shrink - who else will do it?

We'd have a major issue with definition, I think - I think we'd need a clinical research leader to take charge of a national project rather than leave it in the hands of whoever would be running an all-disease, national datamining system.

However, the problem I'm mainly talking about is the failure to take medical risk in the first place. If no NHS clinicians are willing to try out a medical treatment on us, there'll be no data to datamine.

 

[MeSci]

We'd have a major issue with definition, I think - I think we'd need a clinical research leader to take charge of a national project rather than leave it in the hands of whoever would be running an all-disease, national datamining system.

However, the problem I'm mainly talking about is the failure to take medical risk in the first place. If no NHS clinicians are willing to try out a medical treatment on us, there'll be no data to datamine.

True, except for serendipitous effects of treatments for other illnesses suffered by pwME, as has been seen with rituximab for RA, for example.

The data mining can also pick up biochemical data that might be useful, for example in identifying subgroups (methinks this should be in the 'MEs' thread!).

 

[Marco]

What is astounding that the NHS is the biggest employer in Europe - yet quarter of a million of severely ill people are left with virtually no treatment, and often with no access to basic check-ups that are standard in other European countries.

Cheshire ably set out the structure and cost of the French healthcare system and as I said its generally pretty good if expensive. Despite this, my GP knows so little about the condition that he asked my wife for our telephone number because he had just come across another ME/CFS patient and thought I might be better placed to advise her.

 

[Jonathan Edwards]

Just a naive question: are NHS doctors paid by the NHS or by the patients?

Interesting question in the sense that few people know that English GPs are self employed private practitioners who just happen to be paid by the state. In 1948 they were allowed to keep that. The difference from the French is that the patient does not pay up front and get reimbursed. In the old days GPs were not motivated by 'fee for service' but they are now. That may be good for some things but it may also mean they get paid to do whatever they find makes money quickest.

 

[Sasha]

I very much agree with the spirit of that Sasha, but my 'rant', since we are all ranting here, would be to get POPR (people on PR) to really get the arguments tight. The great thing about POPR is that they do argue. Doctors tend to drift around like flocks of sheep. I realise that POPR need to rant, and there's no harm in that, but I would also be interested to see just how high PR can raise its game. There are some very bright and very knowledgeable POPR. I see no reason why the answer to the question 'who knows most about ME' shouldn't be, not 'Professor whatsisname and the group at the Mayo Clinic' but 'those guys on PR - they are the one's who have thought it through'. So instead of this 'disappointing response from some members of the ME community, sniff sniff' reaction the idea is to see the 'experts' looking sheepish (appropriately) and going to read the papers they couldn't be bothered to look up. To do that, in simple terms, the key is not to overstate the case -at least at the interface with other media, even if banging on about something on PR itself is a good way to get people thinking.

I have a feeling I'm missing your point here - is there a discussion on something specific that we ought usefully to be having? I agree there are some very knowledgeable POPR (not me, alas!) and if there's something they should be focusing on, I'm sure they'd be up for it.

Ebola is not really the same is it? You cannot do RCTs on very rare epidemic diseases when you only have 3 doses of treatment. And I think these were mixtures of monoclonal antibodies to Ebola - so there was little or no doubt about the justification for using the doses.

I agree that the Ebola situation differs from ours but my point was that doctors are willing to take a risk in the absence of any RCTs (and I take your point that at this stage they're not possible for Ebola) if the stakes are high enough. I also take your point that they have a rationale for using Ebola antibodies, but there are rationales for using experimental treatments in ME (methylation protocols for people with MTHFR mutations, for example).

For ME as I see it there just isn't the evidence yet. The Norwegians have taken your case to heart and tried something. They were brave to do so with so little to go on. If others have ideas about treatments they should be doing proper trials too surely? Try something on five people and then study it properly. If an RCT was easy enough to do it should have been done. That you cannot really argue against. When I treated 5 RA patients without any controls I was told by an eminent oncologist that I was wasting everybody's time. He changed his mind when he saw the results but no way was I going to continue without setting up a proper study at that point.

If we do not understand a disease any treatment that has a chance of a major beneficial effect also has a chance of a major adverse effect - otherwise it's homeopathy.

I wonder if this is an issue of effect size, statistical power, and heterogeneity of disease. I wouldn't expect five people to be enough to show up an effect of many therapies in ME because of heterogeneity and because most of the things that have been tried don't seem to have major beneficial effects but small-to-moderate ones, and don't work for all patients because we're probably several diseases in one (of course, most things don't work for all patients in any disease). Personally, I'd be thrilled to have a small-to-moderate benefit at this stage. I'd have thought (I could be wrong) that many interventions with smaller beneficial effects would also be lower risk.

I agree it would be great if doctors could even start by trying something on a few patients as long as it wouldn't lead to false negatives due to statistical underpowering, but are doctors free to do this (an honest question, which you'll be better placed to answer than me)? Dr Bansal seems to be having serious trouble getting permission to use immunoglobulin.

Taking on that risk is something I have done and there is no way I would ask a patient to take responsibility for it. Seeing what I have of adverse effects of drugs nobody knew about I just don't think it is on. But I take the point that patients need to be more involved in decision making.

When I was in my twenties, then thirties, then forties, I would have agreed with this position. Now, as old age is thundering towards me and I remain seriously disabled, I'm not so sure. These days, I tend to think that it's my body and that the risk should be mine. I'm already carrying all the risks of doing nothing. But perhaps I'm naive about serious adverse effects of the more heavy-duty drugs and perhaps, if faced with a fully-informed choice, I wouldn't take as much of a risk as I now think. Hard to know!

 

[Cheshire]

Interesting question in the sense that few people know that English GPs are self employed private practitioners who just happen to be paid by the state. In 1948 they were allowed to keep that. The difference from the French is that the patient does not pay up front and get reimbursed. In the old days GPs were not motivated by 'fee for service' but they are now. That may be good for some things but it may also mean they get paid to do whatever they find makes money quickest.

Thanks.

Do GPs receive a salary or a compensation/fee? Is it linked with the number of patients they see or with the number of work hours?

 

[Valentijn]

If there is evidence for infection or abnormalities of the immune system for which there is validated treatment, that will be provided on the NHS, even if things ARE slow.

I can't speak to issues with the NHS specifically, but the experiences of patients with the NHS seem pretty much identical to issues I have with the Dutch health care system.

Basically we have GPs who know nothing about ME/CFS. They don't know anything about the relevant tests (mostly immunological) and are extremely uncomfortable being involved in directly prescribing treatments which they don't understand.

In a sane world, we would have ME/CFS specialists managing our treatment. But our national health care organizations don't have real ME/CFS specialists who can handle the treatment of infections or more general immune dysfunction. The specialist services in both the UK and the Netherlands are entirely centered around CBT, GET, and minimal symptom management.

So when we do find an ME specialist who is a real expert, who understands the testing and treatment of infections, etc, taking the test results and even prescription from that expert to the GP doesn't get us anywhere. The GP has no idea what the results mean, doesn't know who to refer us to, doesn't know if the test is reliable, doesn't know if the prescribed treatment is appropriate, and generally gets overwhelmed and frustrated by being forced to manage patients that the GP is not trained to deal with.

Some patients will get lucky and get a referral to an appropriate specialist in the health care system. But most of the time, that specialist will have preconceived notions about ME/CFS. This often results in minimal or no investigation, despite the prior test results - these specialists will completely disregard those tests because they are from a different country, or perhaps because they are outside their narrow area of expertise.

My own GP was sympathetic and even angry about some of the reactions from these specialists. But that didn't change anything, except that she'd run out of potentially useful people to refer me to. She still can't interpret my lab results, and has limited ability to order them redone in the national health care system, and she still can't responsibly prescribe treatments for them.

Hence I must disagree that abnormal results from reliable tests will result in validated treatments. Too many specialists have been the target of psychosomatic propaganda for far too long. They're still being told that testing ME patients will cause iatrogenic harm, presumably by reinforcing the "false" belief that we are ill. That's an insurmountable hurdle most of the time.

 

[Jonathan Edwards]

Thanks.

Do GPs receive a salary or a compensation/fee? Is it linked with the number of patients they see or with the number of work hours?

It is a very complicated mixture of all of these.

 

[Jenny]

I have had good experiences of the NHS, despite them being unable to help me given current knowledge of ME. All the NHS doctors I've seen over the last 30 years for ME (probably about 20) have been supportive, and have recognised ME as a physical illness. Many gave me every test I asked for in order to exclude all sorts of conditions, and some gave me tests that were only available for research purposes as they were so puzzled by my symptoms. Only one offered CBT and GET, and at the same time said she doubted these treatments would help.

One NHS specialist saw me for 2 1/2 hours in his office every two months for two years, to discuss my symptoms, recent research, and possible further testing and experimental treatments. Another gave me long term anti-viral treatments on an experimental basis, which must have been very expensive.

I know others in the UK have been very badly treated, and I feel lucky to have been unscathed by the NHS. But it's important to recognise that many doctors are doing their best in a very difficult situation.