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Letter in The Times re ME and NHS reforms

Jenny

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http://www.meassociation.org.uk/?p=4978

Letter to The Times: fears for ME patients in the new NHS, 7 March 2011
by tonybritton on March 7, 2011
From The Times letters page, 7 March 2011

ME patients at risk from NHS reforms

Sir, In 2010 the All-Party Parliamentary Group on ME inquiry into NHS service provision for CSF/ME found unacceptable variations in access to hospital-based services. It also found major failures to meet the needs of children and the most severely affected patients. Placing the power to decide priorities for healthcare provision in the hands of GPs can only make matters worse for this vulnerable and greatly neglected group. As the inquiry found, many GPs do not recognise ME and some even deny it exists.

The NHS that is being proposed would lead to a parochial and fragmented approach to services. There appears to be a continuing reluctance to do anything about local funders, commissioners and service providers when they are failing certain groups of patients with chronic conditions and, with the dismantling of the Strategic Health Authorities, there is no body to monitor regional and supra-regional services, nor is it clear who will monitor the care provided by GPs.

Many patients have expressed deep concerns about the effects the changes will have upon their community. There has been no consultation with them or their representatives. They simply know that the new NHS could well be a disaster for them and fear that they will fall through the net when providers compete for the more lucrative services.

COUNTESS OF MAR
Chairman, Forward-ME
DR VANCE SPENCE
Chairman, ME Research UK
SIR PETER SPENCER
Chief Executive, Action for ME
DR CHARLES SHEPHERD
Hon Medical Adviser, ME Association
JANICE KENT
Director, reMEmber
MARY-JANE WILLOWS
Chief Executive, AYME
TANYA HARRISON
Chairman, BRAME
.From → News

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Thanks to all of you!

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Enid

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Thanks for posting Jenny - pretty much sums up the position. GPs not recognising or denying also sums up the position here in Kent. One really feels that GP re-education is one of the most important issues - that being the first stumbling block.
 

Bob

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I can't help thinking that these signatories are deluding themselves that there is a health service for ME patients at all anyway.
In my local region (sussex), there is nothing on offer apart from a 10 session group therapy course of GET which, as the PACE Trial just demonstrated, provides very little in the way of symptom relief (a subjective 11% reduction in fatigue using the Chalder scale), with only 40% of patients reporting that it provided any help to them at all.
You have to be able to get to the hospital by yourself in order to receive the GET, and if you can't then there's no treatment available whatsoever, apart from what your GP can offer.
People who are severely ill (i.e. housebound or bedbound), are looked after only by their GP's anyway, and GET (the only thing on offer from the NHS) isn't at all suitable for severely ill patients anyway, as proved by the FINE Trial.
According to the PACE Trial, GET and CBT aren't effective treatments for any ME patients, and only offer some patients any help, and that's with the questionable methodology and statistical jiggery pokery that they used to make the study look better than it was.
So what world are these signatories living in?
 

Angela Kennedy

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Essex, UK
I can't help thinking that these signatories are deluding themselves that there is a health service for ME patients at all anyway.
In my local region (sussex), there is nothing on offer apart from a 10 session group therapy course of GET which, as the PACE Trial just demonstrated, provides very little in the way of relief to symptoms (an subjective 11% reduction in fatigue using the Chalder scale), with only 40% of patients reporting that it provided any help to them.
You have to be able to get to the hospital by yourself in order to receive the GET, and if you can't then there's no treatment available.
People who are severely ill (i.e. housebound or bedbound), are looked after only by their GP's anyway, and GET (the only thing on offer from the NHS) isn't at all suitable for them anyway, as proved by the FINE Trial.
What world are they living in?

Yes, Bob, I'd have to agree with this analysis.
 

Enid

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Can't quite agree with foregoing - we sufferers are at the "rock face" - meet and experience the total failure of UK medicine for ME. This they know and "slugging it out" aint no good - just reason and better knowledge and their persistance - so thanks to the signatories.
 
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That's the way I see it too. Yes the Tory 'reforms' are going to be a sustained attack on the sick and disabled, and those of us who've managed to get disability benefits will come under attack that way. But as far as NHS health services go, have we really got anything to lose?
 

Bob

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Just to clarify my earlier message... I'm not ungrateful to the signatories, but I don't think they are addressing the issues that need addressing. I believe that they should be asking for real treatments for ME on the NHS, and not asking for a balanced distribution of pseudo psychological interventions, across the NHS, which have now been proved to be ineffective.



... But as far as NHS health services go, have we really got anything to lose?

Answer = No
 

Enid

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Bob - the psychobabble is what they are fighting against knowing more of the disease process than the present establishment here. 11 years and no NHS myself is something I had/have to live with. Of this they are aware.
 

Bob

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Bob - the psychobabble is what they are fighting against knowing more of the disease process than the present establishment here. 11 years and no NHS myself is something I had/have to live with. Of this they are aware.

Enid, I'm not certain that is true for all the signatories.
Action for ME have never strongly opposed the NICE guidelines, and I believe that AYME has a bad track record in terms of promoting questionable psychological interventions. But I do have a lot of respect for some of the signatories, so maybe my comments have been unfair to them.
 

Enid

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Stick with 'em Bob - much changing of positions (needed by some) going on. The sheer numbers affected world wide will carry the day.
 

SilverbladeTE

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Somewhere near Glasgow, Scotland
I appreciate the sentiment, but I think we know that the NHS is already a disaster for us.

NHS is not merley no use, it's actively HINDERING any help for us.
WHy ban ollow up MRI/SPECT scans?
Why no disicplnary action against those who denied M.E. existance or refusal to respect patients as their Oaths and regulations specify
etc.

been on the reciveing end of outright sh*t and medical wrongdoing from ratbags too often in the NHS for it to anything other than endemic and/or deliberate culture of abuse
 

Bob

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NHS is not merley no use, it's actively HINDERING any help for us.
WHy ban ollow up MRI/SPECT scans?

That's another reason why i think the signatories in the letter are barking up the wrong tree...
If GP's are empowered to treat us in any way they see fit, and if we are allowed to choose our GP's, then we might end up with something similar to the Canadian system where we might get expert GP's who specialise in certain areas, such as ME. These GP's might be able to order MRI and SPECT scans for us if they thought that they were appropriate to our illness, depending on how the system is set up. It all depends on how the system ends up working, but it could actually go in our favour, even though, in a broader sense, I can't see the proposed system of semi-privatisation working successfully. Actually, I think it will be a totally disastrous reorganisation, unless it's very carefully planned over a number of years with a lot of patient consultation.
 

Enid

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Quite agree Bob - we have so much medical "culture" to change - from 11 years ago sitting with much difficulty in a Practice of 5 who missed my own Hypothyroidism beginnings lost the plot. And yet in my family a Prof Neurology (US) who tells me this undiagnosed leads to/indicates other problems. GPs need re-education.
 

Bob

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Quite agree Bob - we have so much medical "culture" to change - from 11 years ago sitting with much difficulty in a Practice of 5 who missed my own Hypothyroidism beginnings lost the plot. And yet in my family a Prof Neurology (US) who tells me this undiagnosed leads to/indicates other problems. GPs need re-education.

My GP missed my hypothyroidism as well... He had the blood test readings in front of him, but didn't pick up on them to treat it (didn't he notice them, was he incompetent or didn't he care? i don't know)... A year later, after a lot of symptoms had become obvious, I diagnosed myself and finally got treated... And GP's are going to be in charge of our entire health programs? Scary! In my experience, GP's are often next to useless.
 

Enid

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Know it all well Bob and the failure in my Practice was apparently sent back to school (he now apparently is the Wiz Kid in this). Another example of how the medics will stick together to protect not patients but themselves.
 

garcia

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But I do have a lot of respect for some of the signatories, so maybe my comments have been unfair to them.

Actually I thought you were spot-on Bob.

This bit particularly irks me:

In 2010 the All-Party Parliamentary Group on ME inquiry into NHS service provision for CSF/ME found unacceptable variations in access to hospital-based services
What services??? There is no service. That is the problem!
 

Enid

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Stick behind 'em - could be none aforegoing know/experienced worse than I.
 

orion

Senior Member
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Location
UK
Totally agree with the comments so far. One of the reasons why things are so bad for ME patients in the UK is because our (mostly self-appointed) representatives are either totally clueless, obsessed with ingratiating themselves with the medical establishment, or actively working for the other side. It's hard to see how the signatories (some of whom supposedly have ME themselves) can so spectacularly miss the elephant in the room.

Nothing will change for us unless GPs are allowed to disregard NICE guidelines without fear of being disciplined, or better still, patients are given the power to self-prescribe.

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.