Letter in The Times re ME and NHS reforms

[Ian McLachlan]

The fact that a parliamentary group is writing to a newspaper is a clear indication that they recognise they have little if any influence - something we can at least be grateful for. Why write otherwise?

 

[Bob]

However, if I take my ME patient hat off for a minute and look at the wider implications of the 'reforms', I agree with the signatories that they do look to be extremely misguided. One of the weaknesses of the NHS's structure is that GPs act as the gatekeepers for all treatments. That's an enormous concentration of power in the hands of a relatively small number of people.

The system works tolerably well if you've got a good GP. But if your GP is lousy (and let's face it, many are) then you're basically screwed. I just don't see how concentrating even more power into the hands of GPs can be a good thing.

It might work in our favour if we were able to choose to see any GP in the country...
This freedom of choice would give us an immense opportunity...
There would be some GP's who specialise in ME who we could rely on...
And it would mean that they would understand the disease, and so patients wouldn't be referred to psychiatric hospitals.
This could work for all other diseases as well... For example, there might be GP's who specialise in MS or Coeliac Disease etc etc etc.
It all depends on the details, how it's all implemented, and the rights that patients are given, and the safeguards put in place for patients.
I think it could lead to a disaster or an opportunity, depending on how it's implemented.
(But I can't help feeling that the whole thing is going to be a rushed and ill-thought-through total disaster!)

 

[Snow Leopard]

Well said Bob.
Though it is mostly a disaster anyway, since there already little in the way of treatments for ME/CFS in the UK.

 

[orion]

It might work in our favour if we were able to choose to see any GP in the country...
This freedom of choice would give us an immense opportunity...
There would be a GP's who specialise in ME who we could rely on...
And it would mean that they would understand the disease, and so patients wouldn't be referred to psychiatric hospitals.
This could work for all other diseases as well... For example, there might be GP's who specialise in MS or Coeliac Disease etc etc etc.
It all depends on the details, how it's all implemented, and the rights that patients are given, and the safeguards put in place for patients.
I think it could lead to a disaster or an opportunity, depending on how it's implemented.
(But I can't help feeling that the whole thing is going to be a rushed and ill-thought-through total disaster!)

Interesting. That's one aspect of the reforms that I hadn't heard about. So you're saying that GPs would effectively be allowed to become de facto consultants in a speciality of their choosing, and that patients would be able to self refer to a consultant of their choice. If you're correct then that would indeed be an improvement over the current system.

But as always the devil is in the detail. I'd be very surprised indeed if that's how the government actually intends the system to work, and in any case, there would be huge resistance from the medical profession. Existing consultants wouldn't like it for a start. And what about NICE guidelines? There's no point in being able to choose your own doctor, if they're all forced to offer the same ineffectual treatments.

 

[Bob]

Interesting. That's one aspect of the reforms that I hadn't heard about. So you're saying that GPs would effectively be allowed to become de facto consultants in a speciality of their choosing, and that patients would be able to self refer to a consultant of their choice. If you're correct then that would indeed be an improvement over the current system.

But as always the devil is in the detail. I'd be very surprised indeed if that's how the government actually intends the system to work, and in any case, there would be huge resistance from the medical profession. Existing consultants wouldn't like it for a start. And what about NICE guidelines? There's no point in being able to choose your own doctor, if they're all forced to offer the same ineffectual treatments.

I haven't actually read the details of the proposals, and so I don't know how much choice of GP is to be given to patients.
I'm also not sure if GP's will be able to order any tests and treatments for their patients, or if specialist consultants will need to be involved for some tests and prescriptions.
I don't know how much flexibility is proposed for the system for the GP.

So, yes, the devil is in the detail.

With regards to the NICE guidelines, doctors do not have to prescribe GET or CBT, and they can prescribe anything to treat the symptoms of ME.
So if we are free to chose a sympathetic GP, I think it will make a considerable amount of difference for ME patients, within limits.

But like I said, I don't know how much flexibility is proposed for patients or GP's.
Maybe I'll see if I can find the proposals, and I'll report back.

 

[WillowJ]

We should all buy a one way ticket to Reno, Nevada.

It looks nice there too...
http://maps.google.co.uk/maps?hl=en...=39.100226,-120.2948&spn=3.05631,4.916382&z=8

the weather is, I think quite severe (hot in summer days and cold in winter) in Nevada, but I think the air should be clear and fresh. I had actually thought of doing this (no ME-competant doctor in my area, but at least I'd be staying in country)... just reluctant to leave my family here in my hometown

more practically, I hope your reforms work out so you can actually get some decent care

 

[Bob]

Yes, it looks like patients will be able to chose any GP... Here's a snippet from a BBC article...

...patients will be handed more choice over how and where they are treated.

They can already choose which hospital they want to go to for non-emergency operations, such as knee and hip operations.

In the future, this choice is to be extended to GPs. Practice boundaries will be scrapped, enabling a patient to register with any family doctor they wish to.

http://www.bbc.co.uk/news/health-12177084

And this is from the Department of Health's website:

What does it mean for the patient?

No decision about me without me will be the principle behind the way in which patients are treated patients will be able to make decisions with their GP about the type of treatment that is best for them. Patients will also have more control and choice over where they are treated and who they are treated by.

They will be able to choose their:

?GP
?consultant
?treatment
?hospital or other local health service.

Patients will be able to get the information they need, such as how well a hospital carries out a particular treatment, to help them decide on the best type of care. If patients are unhappy with their local hospital, or other local services, they will be able to choose another one to treat them.

http://healthandcare.dh.gov.uk/context/quickguide/

What does it mean for GPs and other primary care clinicians?

GPs will be responsible for designing local services for patients they will decide, for example, what services are needed for patients with asthma or diabetes or how pre- and post-operative care can be best organised.

Working with other local clinicians, GPs will take over from managers in Primary Care Trusts as the people who buy health services for patients.

GPs will also be more directly accountable to patients, who will be able to choose any GP practice they like, regardless of where they live.

http://healthandcare.dh.gov.uk/context/quickguide/

I'm still missing some essential details though, such as how much freedom the GP will have to order tests, treatments and prescriptions, without the input of a specialist consultant for certain conditions. In other words, will the GP actually be able to act as a de facto consultant for all health problems?

 

[insearchof]

Having read the thread so far, I think why the problem is so bad in the UK is fundamentally the orgs and only your system in part.

In Australia we chose our own GP and the situation is pretty much like Bob suggested. Though, GPs who specialize in CFS or ME are rare ..but are all the same available.

A GP I know from the UK told me that with tests like Xrays etc, are all processed through hospitals and their labs....so for some results (if not urgent) you can be waiting some time. That's pretty mind boggling to us here, because these tests are provided by a number of private labs etc and the government provides a rebate. so turn around times are pretty fast. this GP also told me, that GPs in the UK will not or cannot order some tests. It is the same here, unless you are prepared to pay the full cost of the test yourself, but this GP from the UK said that even if patients wanted to pay full costs for tests, they could not get them done! I was quite shocked.


Even though we have greater choice here, there are hardly any GPs specializing (I know of 3) in my state and it can take months to get an appointment. Most GPs are otherwise not interested in treating the illness.....our health issues are too complex and the politics and dis information regarding these illnesses often means that few doctors even try.

So system reform is not the answer. Changing the medical profession and governments attitudes is.

 

[Bob]

Here's some information about what powers and duties it is proposed that GP consortia will have:

Powers

Power to arrange for provision of services that aim to secure improvements in physical and
mental health, or in the prevention, diagnosis and treatment of illness, for the people for
whom the consortium is responsible.

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_125006.pdf

Duties

To commission healthcare to the extent the consortium considers necessary to meet the
reasonable requirements of patients registered with the GP practices who are members of
the consortium.

To ensure that the consortium obtains advice from people with professional expertise in
relation to peoples physical and mental health.

To exercise their functions with a view to securing continuous improvements in the quality of
services for patients and in outcomes, with particular regard to clinical effectiveness, safety
and patient experience.

To have regard to the need to reduce inequalities in access to healthcare and healthcare
outcomes, promote patient and carer involvement in decisions about them (no decision
about me without me) and enable patients to make choices with respect to aspects of
their healthcare.

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_125006.pdf

So it looks like GP's will be given considerable freedom.
They only have a duty to seek 'advice' (i.e. not instructions) from specialist consultants, so the freedom will be with the GP to order tests, treatments and prescriptions.
So it looks like the GP's will become de facto consultants.

 

[Bob]

A GP I know from the UK told me that with tests like Xrays etc, are all processed through hospitals and their labs....so for some results (if not urgent) you can be waiting some time. That's pretty mind boggling to us here, because these tests are provided by a number of private labs etc and the government provides a rebate. so turn around times are pretty fast. this GP also told me, that GPs in the UK will not or cannot order some tests. It is the same here, unless you are prepared to pay the full cost of the test yourself, but this GP from the UK said that even if patients wanted to pay full costs for tests, they could not get them done! I was quite shocked.

Yes, that's exactly the situation in the UK at the moment.

Having read the thread so far, I think why the problem is so bad in the UK is fundamentally the orgs and only your system in part.

In Australia we chose our own GP and the situation is pretty much like Bob suggested. Though, GPs who specialize in CFS or ME are rare ..but are all the same available.

...

Even though we have greater choice here, there are hardly any GPs specializing (I know of 3) in my state and it can take months to get an appointment. Most GPs are otherwise not interested in treating the illness.....our health issues are too complex and the politics and dis information regarding these illnesses often means that few doctors even try.

So system reform is not the answer. Changing the medical profession and governments attitudes is.

Thanks for sharing your insights, insearchof...

It's a helpful reminder for me to not bother getting excited about any proposed reforms!

 

[Bob]

the weather is, I think quite severe (hot in summer days and cold in winter) in Nevada, but I think the air should be clear and fresh. I had actually thought of doing this (no ME-competant doctor in my area, but at least I'd be staying in country)... just reluctant to leave my family here in my hometown

more practically, I hope your reforms work out so you can actually get some decent care

In my experience, very fresh sea air is really helpful for me.
In an ideal world, I would move to Devon or Cornwall, England's purest coastlines.
But, the same as you Willow, I don't want to move away from family and friends.

 

[insearchof]

Bob

Given our experience here in Australia with the system you thought might further the plight of patients ( and that has shown to be false ) it might be better to channel emery elsewhere.

If a government is forced to accept the truth re ME then it will treat it in whatever system it has.

ISO

 

[Bob]

Bob

Given our experience here in Australia with the system you thought might further the plight of patients ( and that has shown to be false ) it might be better to channel emery elsewhere.

If a government is forced to accept the truth re ME then it will treat it in whatever system it has.

ISO

I think it might be helpful/interesting for UK patients to discuss what changes are being proposed to our NHS.
It's interesting for me anyway.

Even the fact that we will be able to choose any GP in the country might make a significant difference to some of us.
Actually, I'm sure that it will make a huge difference to some of us, who currently do not get any choice about which GP or which consultant we see.
If it only ends the abuse that many of us are subjected to, then it will change people's lives.

It also means that the current ME consultants, who are often ignorant about the nature of ME, and treat it as a psychiatric illness, and who often refer ME cases in children to social services, will not have a monopoly over ME treatment. This is a good thing.

I'm not expecting miracle changes to the way ME is treated, but small differences, such as seeing a sympathetic and friendly GP, can make a huge difference in someone's life.
It does for me anyway. I used to leave my previous doctor's surgery close to tears because I was so ill, but I was being totally ignored and not given any support whatsoever. My new doctor listens, and is sympathetic and tells me the truth when she can't help me, in a caring way. It makes such a massive difference to my life to have a doctor who cares, even if she can't actually treat ME.

I don't know exactly what your system is in Australia, but in the UK they are proposing to give GP's total control over commissioning of services, so it might be a slightly different set up? But like i said, I'm not expecting miracles.

 

[insearchof]

Hi Bob,

Let me say, that an improvement to your system - similar to what we enjoy, would be a good thing. You might find a sympathetic GP as you say and they can make a world of difference. I guess the freedom of choice we have, we take for granted.

But the sympathetic GPs are the knowledgable ones here and they are rare. Great if you can get in to see them and I agree, it makes a world of difference. But they are so few, that they cannot cope with demand, and they are known to close their books.

Ours is a good system, and you can get a number of tests if your willing to pay for them yourself - if you can find a GP knowledgable enough to order them.

But the system is not the answer. Our system would work really well to treat us - if it were not for the misinformation being fed to the medical profession. However, because of it -most of us do not get treated either. Or here, you may pay a fortune for all these tests ordered by a sympathetic GP (but not one that specialises in the illness) and then find that he does not know how to interpret them or what to do next. A sympathetic GP might be fine for mental health, but if they have no real knowledge or interest in the illness, they are not going to assist in helping you find your way to better health. That is why I think awareness raising is key.

So we have, by your standards, a wonderful system - but we are still being denied appropriate medical care and treatment.

All I am saying is, dont pin all your hopes there. Look at our example and learn what you can from it.

ISO

 

[orion]

With regards to the NICE guidelines, doctors do not have to prescribe GET or CBT, and they can prescribe anything to treat the symptoms of ME.
So if we are free to chose a sympathetic GP, I think it will make a considerable amount of difference for ME patients, within limits.

In theory that's true. But in practice doctors appear to be under huge pressure not to deviate very far from the NICE guidelines. It's actually incredibly disingenuous of the medical establishment to use the term 'guidelines' when they're effectively mandatory.

Just look at the case of Sarah Myhill. First she was hounded out of the NHS and now she's facing disciplinary action and the possible permanent loss of her medical license simply for committing the 'crime' of offering patients treatments they actually want. You couldn't make it up.

 

[orion]

So system reform is not the answer. Changing the medical profession and governments attitudes is.

Couldn't agree more although I don't think changing attitudes on its own will be enough. We also need changes in legislation to address the fact that the medical profession is just too damn powerful. The current healthcare system was created by, and primarily for the benefit of, doctors. It's deliberately designed to disempower patients.

A good starting point would be to scrap the prescription system and allow patients to purchase whatever drugs they see fit, at their own risk and expense.

 

[Bob]

In theory that's true. But in practice doctors appear to be under huge pressure not to deviate very far from the NICE guidelines. It's actually incredibly disingenuous of the medical establishment to use the term 'guidelines' when they're effectively mandatory.

Just look at the case of Sarah Myhill. First she was hounded out of the NHS and now she's facing disciplinary action and the possible permanent loss of her medical license simply for committing the 'crime' of offering patients treatments they actually want. You couldn't make it up.

Yes, I'm under no illusion that everything is going to be wonderful under a new system, but maybe there is some potential for the proposed system being better than the current system.

The NICE guidelines make it clear that patients should not be under pressure to accept GET and CBT as treatments. And that patients are entitled to refuse CBT and GET without it prejudicing their overall treatment. Many consultants chose to ignore the section of the NICE guidelines that says that. A sympathetic doctor would not force CBT and GET on their patients, and then commit them to a psychiatric ward when the patient refuses to accept these treatments.

The NICE guidelines state:

Healthcare professionals should be aware that like all people receiving care in the NHS people
with CFS/ME have the right to refuse or withdraw from any component of their care plan without
this affecting other aspects of their care, or future choices about care.

http://www.nice.org.uk/nicemedia/pdf/CG53QuickRefGuide.pdf

So I think that finding a sympathetic doctor might make life slightly better for some ME patients, just because the abuse potential from medical staff will be reduced.

But I don't know if it would be easier or harder for a GP like Sarah Myhill to operate under the proposed system.
In reality, there probably wouldn't be much difference, like you say, Orion.
So I imagine that it will still be difficult for individual GP's to do what Sarah Myhill does for her patients.

 

[insearchof]

Hi Bob

Your last comments about GPs like Myhill are telling and alarming, In so far as her case goes ( didn't she win a High Court appeal? ) I think it high lights Orions point nicely

**What was the end result of Myhills case?

** Not to worry...found the thread in the forum

 

[Mark]

Couldn't agree more although I don't think changing attitudes on its own will be enough. We also need changes in legislation to address the fact that the medical profession is just too damn powerful. The current healthcare system was created by, and primarily for the benefit of, doctors. It's deliberately designed to disempower patients.

A good starting point would be to scrap the prescription system and allow patients to purchase whatever drugs they see fit, at their own risk and expense.

Quite right. It's such a sick situation, that the services we pay our taxes for will do nothing to help us, and we have to spend our own money on the therapies that do help, and manage and investigate what works for us, taking over responsibility for our own healthcare. Some kind of revolutionary voucher system would be much fairer, for us, at least. It would be a rational and reasonable response to all kinds of problems that the mainstream healthcare has no answer to: let patients spend vouchers on their experimental and alternative treatments of choice.

It seems to me that this sort of model is exactly the sort of thing that a Conservative government would seem more likely to introduce than a Labour government, so I actually still have some optimism that we might get something more positive from them than we ever would from Labour. It's a brief opportunity though: the Tories will probably never see power again after what they're going to do to us all in the next few years! The Tory 'reforms' are going to be awful for everyone else, but with our unique situation, it's just possible we might get something good out of it all - and we have absolutely nothing to lose.

I'm sorry, but I find it hard to get motivated about the pain everybody else is going through these days in relation to stuff like healthcare. If the rest of the population showed a bit more interest in those who have never been offered any healthcare at all, I might feel a bit more sympathetic about the plight of people who are about to be brought a step closer towards our level of service, but selfish as it may be of me, it's just nice to know that there's at least one area of cuts where there's nothing that can possibly happen to make my situation any worse than it already it is. Even the Tories can't find a way to give us less than nothing, surely? I guess the situation is very different if you've managed to get sickness benefits though - there really could be some horrific scenarios coming down the track for those of us in that situation.

 

[currer]

I do not believe the NHS can absorb the disruption caused by yet another reorganisation.

Dealing with the costs in time and management of continual politically motivated reforms by politicians who see touting "reform" as a way to raise their political profile at the cost of the NHS is destroying healthcare in Britain.

The NHS spends too much of its time and energy on implimenting reorganisations every five years. When are the doctors and healthcare workers going to be allowed to get on with their vocation - the care of patients?
Too much of the energy of NHS employees has been wasted by being diverted into these politically led, bureaucratic white elephants.

NHS "reform" is unlikely to go ahead - it is opposed by the BMA and virtually every doctor in the country.
NHS doctors who value an unprivatised national health system will not allow a further dismantling of healthcare in this country.