Lady Mar writes to Prof Wessely

[Firestormm]

I'm not sure what the point of this is. Normal CBT has absolutely nothing to do with Simon Wessely.

Did you read my comment, Val. If so, and you still want to discuss the point you have made, I'm happy to of course. If it's your opinion that Wessely (and presumably others too) are doing something other than what i have said in that post (and others too) then I'd be happy to discuss further. Bit shattered now though so will have to be later. Rough and shitty night I'm afraid

 

[Valentijn]

Did you read my comment, Val. If so, and you still want to discuss the point you have made, I'm happy to of course. If it's your opinion that Wessely (and presumably others too) are doing something other than what i have said in that post (and others too) then I'd be happy to discuss further. Bit shattered now though so will have to be later. Rough and shitty night I'm afraid

I have no idea what he does in his clinic. But his research, manuals, and statements regarding ME and CBT strongly suggest he is trying to cure his patients of ME by fixing their false illness beliefs. Or do you think he's trying to convince the world to use Bad-CBT while using Real-CBT himself?

 

[barbc56]

The recent AfME report on NHS provision for ME patients provides strong evidence of lack of care in Great Britain. It's a comprehensive survey of every local health trust, and was called "Ignorance, injustice and neglect" because,

I'm talking about statistics. Not an opinion piece. I will have a look at it.

Barb C.:>)

 

[Valentijn]

I'm talking about statistics. Not an opinion piece. I will have a look at it.

For some reason I don't think government agencies are gathering statistics to show how crappy they're treating people with a certain illness.

 

[barbc56]

@Valenjin. Surprisingly, there are people who have jobs that do just this. They look at the statistics then compare and contrast the results. Now you might get conflicting takes by staticians but at least you have something black and white to base your opinions. That's why it's important to define what "crappy" means. It backs up what you are saying.

Doesn't mean you can't use the word crappy as it is an apt description for our condition, isn't it? I can think of even worse words that would apply but don't want to be moderated.

So I guess the question is if this thread asking for opinions or facts. Possibly both?

Barb C.:>)

 

[Valentijn]

So I guess the question is if this thread asking for opinions or facts. Possibly both?

Patients' accounts of their treatment is "facts". Unless you think they're lying.

 

[barbc56]

I think people and those referenced on this thread genuinely believe what they are saying is true. Same goes for Wessely and company. I just like to get the facts before forming an opinion. It's just my style of processing the. information. Others may choose a different approach.

I think we need to be careful about accusations towards others whether they are directed to forum members, Wessly or just in everyday life.

Barb C:>)

 

[rowland]

barbc56

I'm talking about statistics. Not an opinion piece. I will have a look at it...

It helps to read a comprehensive survey of every local health trust in Great Britain about statutory provision of services before dismissing it as an opinion piece.

 

[alex3619]

I think people and those referenced on this thread genuinely believe what they are saying is true. Same goes for Wessely and company. I just like to get the facts before forming an opinion. It's just my style of processing the. information. Others may choose a different approach.

I think we need to be careful about accusations towards others whether they are directed to forum members, Wessly or just in everyday life.

Barb C:>)

Getting the facts, all the facts, is not only a problem its impossible. The best we can do is assemble as many of the facts as feasible. It has been discussed several times that we need an information resource containing only highly reliable information or published articles, with commentaries. This will help separate conjecture from substance. I know some sites exist but they are too political. It is possible to create one however.

Generally making accusations is not a good idea. Asking questions is however always valid. Similarly we can criticize positions, statements etc. as to either intended meaning or effect. Neither requires an assertion about the person making such statements.

However we live in a world which is full of uncertainty. One of the rationalists' dilemmas is how to act when there is uncertainty. Full rationalism of the classic variety would wind up with rationalists exploring everything and doing nothing. In reality most do not do this, but they choose to respond on limited information. This might be justifiable, but its equally fallacious ultimately. Uncertainty cannot be ignored, but nor should it be an excuse for nonaction.

So while I much prefer to see evidence, and sound argument, I also don't think we can't just sit back and wait for everything to be figured out. Action is sometimes important even if its in the wrong direction. Course corrections can come later. Perfection is both an ideal and a myth, its not reality.

Bye, Alex

 

[barbc56]

Action is sometimes important even if its in the wrong direction

I would heartily disagree with this. It hasn't worked so far. I'm not saying perfection but as close as you can get. Whether that means we can get information now or later depends on the issue talked about.

I feel like I am beating a dead horse here and can't think of anything to add at the moment so I will try and refrain from commenting as I feel I am being goaded to answer a question I have already answered!! Enough said.

Barb C.:>)

 

[ukxmrv]

I was wondering where we would find the same figures in the USA Barb?

In the UK, we have reports such as the Gibson report and also surveys from the various patient groups.

I can't think of any Governement that would collect data on how badly patients with a disease are treated (as an earlier poster said so well). If if the UN or the WHO did a report you would probably say it was an opinion as you have no spefified what you would accept as evidence. All reports are going to be opinion or based on surveys.

What exactly is it that you are hoping to find that would convince you?

It all goes back to the old evidence based argument. who controls and collects the evidence....

Anyway, if you can find the same type of data from the USA or any country let me know and I'll try to find the same in the UK.

Likewise if you specificy what level of proof you require I'll let you know if such a thing exists.

You may be setting your evidence bar at the unicorn level.

 

[Kati]

i don't believe any government is keeping tab on how patients are treated, unless patients are complaining, but they would be quick to readdress this type of complaint to the governing bodies, like the College of physicians and surgeons and we all know where that would go unless there is proof of gross indecency or gross malpractice.

Patients experiences are certainly valuable and I have wanted in the past to collect such information with the hope to publish that. i think it would provide insight, on day, on what we all had to endure.

 

[rowland]

Here's the Executive Summary of the recent AfME survey of NHS providers (not patients). The full document already linked to contains the detailed breakdowns of all responses by local area, including maps.
http://www.actionforme.org.uk/Docum... Exec Summary.pdf?dm_i=1HO,U8ZK,31FW4,2HE0A,1
Executive Summary
Action for M.E. sent requests to all PCTs in England, Health Boards in Scotland and Wales and Health and Social Care Trusts in Northern Ireland under the Freedom of Information Act that included a questionnaire which aimed to identify what NHS services were available to M.E./ CFS patients throughout the UK.
We received responses, or part responses, from all but seven trusts and boards. We have reported those that did not meet their legal duty to reply to the Information Commissioner. A list of those who did not respond appears in Appendix D.
Our questionnaire asked for the following information:
Do they refer to specialist services?
The National Institute for Clinical Excellence (NICE) gives all 151 PCTs in England explicit guidance on when children and adults should be referred to specialist clinics. Yet more than a quarter of the trusts that responded admitted that they did not commission specialist secondary care.
Do they have a care pathway?
Only 15 PCTs, less than a third of those that responded to this question, said they provided a designated M.E./CFS care pathway for their area. NICE recommend clear care pathways for this patient group. Seven out of 14 Scottish Health Boards said they did not have care pathways. Only two said they had. The rest did not respond. The Welsh boards that responded said they did not have care pathways. The Northern Ireland Heath and Social Care Board said it was ‘working towards’ adopting NICE guidelines in relation to care pathways.
Do they provide domiciliary services (home visits)?
Only 37 out of 151 PCTs said they provided domiciliary care and, of these, only 12 were able to provide statistics on how many people with M.E./CFS had been seen in their home during each year. Only one Scottish, one Welsh and one Northern Ireland board said they provided home visits for people with M.E./CFS.
How much do they spend on specialist secondary care each year on adults and on children with M.E./CFS?
Only 53 PCTs, one Scottish Health Board and four Welsh Health Boards were able to provide full or partial funding details for M.E./CFS. Thirteen reported zero funding. Funding per person with M.E/CFS varied widely and ranged from just £1 to £382. Twenty PCTs (excluding those with zero funding) spent £50 or less per patient (including four which spent £3 or less) and a further 13 spend £150 or less. Only two spent more than £200.
How many adults and children with M.E./CFS do they refer to secondary care specialist services each year?
The need for early diagnosis, especially for children, with referral to specialist services if necessary is stated in the NICE Guideline 53. However, only 16 of the 151 English PCTs and one of the 14 Scottish Health Boards were able to provide separate details of how many children they had referred to specialist M.E./ CFS services.
Conclusion
The overriding conclusion from this brief, but wide-ranging study, is that throughout the UK there is very little evidence of proper planning to understand and provide for the specialist healthcare needed by people with M.E./CFS. Even where clear requirements and standards have been laid down, they appear to be largely ignored.
Record keeping for this patient group is extremely poor overall. However, from the information that has been provided by the organisations responsible for patient care in each of the four home nations we conclude that

• there is gross under-provision for specialist care for M.E./CFS patients throughout the UK and wide variations between different locations giving rise to a pronounced post code lottery effect
• few care commissioning organisations have bothered to produce a Care Pathway for treating these patients
• there is widespread failure to provide the domiciliary specialist services that are needed by the most severely affected patients
• the provision of specialist services for children is worse than for adults despite the devastating impact this illness has on their social and educational development
• in Scotland and Wales statements of good intent have been made by each of the Governments, but so far there has been no evidence of implementing any significant initiative to provide appropriate secondary care for patients presumably because the additional resources required have not been made available
• progress in Northern Ireland lags well behind and the NHS has not yet even grasped the scale or the seriousness of the impact of M.E./CFS upon patients and their families
• the situation in England is profoundly depressing given the initiative taken to set up pilot specialist services in the period 2004-2006, the publication of the National Services Framework for Long Term Conditions and NICE Guideline 53 and repeated assurances by Ministers of successive Governments that the needs of M.E./CFS patients would be addressed by local care commissioners.

What this investigation has revealed is:

• widespread ignorance on the part of commissioners who in so many areas don’t even know what the patient needs are
• injustice towards patients who are the innocent victims of a very pronounced post code lottery effect across England
• neglect particularly of severely affected patients who in the main do not receive any domiciliary secondary care service from the NHS; and neglect of children who are not getting the early diagnosis and early referrals as set out by NICE.

It is relevant here to note that the Aviva Health of the Nation Study in 2011 cited M.E./CFS as the most difficult condition for GPs to refer; exactly the same as it did in a similar report in 2003. This is hardly surprising given the admission by most PCTs that they have not complied with either the National Service Framework (NSF) for Long Term Conditions or the NICE Guideline for M.E./ CFS. Failure to train GPs in M.E./ CFS is a contributing factor.
Localism in commissioning care for M.E./CFS patients has clearly failed this relatively large patient group. It is hard to name any other condition which has such a big adverse impact on so many people and upon which so little money is being spent to provide specialist healthcare.
The new commissioning arrangements that will be introduced by the Health and Social Care Act 2012 provide an opportunity in England to put in place much better commissioning arrangements for M.E./CFS services.
Recommendations
The Northern Ireland Government should accept this report as another wake-up call to engage with patient groups and clinicians as a matter of great urgency. It should draw up a clear national framework for assessing the specialist M.E./ CFS healthcare needs of its population and a funded plan for implementation.
In Scotland and Wales, Governments should provide ring-fenced additional start-up funding immediately to implement the national plans they have already drawn up and make proper provision for full- scale services as soon as possible.
In England, The Secretary of State for Health should take responsibility for ensuring that the care commissioning process in the UK is done properly for M.E./CFS specialist services. As local commissioning has so evidently failed this patient group, special arrangements should be made by the new NHS Commissioning Board. The outcomes of these arrangements should be periodically audited to check compliance.
At the local level, members of national Parliaments and Assemblies, together with elected representatives in local Government, should examine the information provided from their areas and hold to account those organisations that are failing their M.E./CFS patients so badly.

 

[In Vitro Infidelium]

Here's the Executive Summary of the recent AfME survey of NHS providers (not patients). The full document already linked to contains the detailed breakdowns of all responses by local area, including maps.
http://www.actionforme.org.uk/Documents/get-involved/NHS report Exec Summary.pdf?dm_i=1HO,U8ZK,31FW4,2HE0A,1 .....................

Recommendations
The Northern Ireland Government should accept this report as another wake-up call to engage with patient groups and clinicians as a matter of great urgency. It should draw up a clear national framework for assessing the specialist M.E./ CFS healthcare needs of its population and a funded plan for implementation.
In Scotland and Wales, Governments should provide ring-fenced additional start-up funding immediately to implement the national plans they have already drawn up and make proper provision for full- scale services as soon as possible.
In England, The Secretary of State for Health should take responsibility for ensuring that the care commissioning process in the UK is done properly for M.E./CFS specialist services. As local commissioning has so evidently failed this patient group, special arrangements should be made by the new NHS Commissioning Board. The outcomes of these arrangements should be periodically audited to check compliance.
At the local level, members of national Parliaments and Assemblies, together with elected representatives in local Government, should examine the information provided from their areas and hold to account those organisations that are failing their M.E./CFS patients so badly.

There's a sort of double schizophrenia involved here: the NICE Guidelines don't provide for what patients appear to find to be of benefit, yet the only reference for bringing services for M.E/CFS up to standard are the NICE Guidelines which include the unpopular (and ineffective) CBT/GET model. There's also the small matter of huge financial pressures (projected for years to come) on the NHS budget. So if one takes the AfME report at face value, the argument is for spending money which is not available, on services which patients are dubious about.

The new commissioning arrangements for England might allow some useful developments in some regions - areas where there is an above average population level of good health, but commissioners are going to be treatment orientated, spending on new services which don't reduce disease burdens are not going to be a priority where there is a high burden of (recognised) life threatening illnesses. The chances of ring fenced funding for M.E/CFS in either Scotland or Wales seem very slight. The AfME report could have been relevant in 2003 - in 2013 it looks like something from the Christmas Wish list.

IVI

 

[justy]

Hi IVI, i get your point and in the main would agree with the thrust of your argument. But we have to start somewhere, surely home visits or management plans would not be something patients dont want? im one of those whose had £0 spent on me and all i want at the moment is to see that someone takes an interest and cares - a supportive GP or service that gives me medications that they are allowed to prescribe that may help (just talking simple painkillers etc here) as well as at least feeling someone is following my progress (care plan?) i wouldnt mind being offered good quality CBT to help me cope with being ill (although person centred counselling would be more useful) currently offered zilch.

Justy

 

[In Vitro Infidelium]

Hi IVI, i get your point and in the main would agree with the thrust of your argument. But we have to start somewhere, surely home visits or management plans would not be something patients dont want? im one of those whose had £0 spent on me and all i want at the moment is to see that someone takes an interest and cares - a supportive GP or service that gives me medications that they are allowed to prescribe that may help (just talking simple painkillers etc here) as well as at least feeling someone is following my progress (care plan?) i wouldnt mind being offered good quality CBT to help me cope with being ill (although person centred counselling would be more useful) currently offered zilch.
Justy

You are of course absolutely right 'we have to start somewhere' - even if it's not 'where we'd like to start from'. Equally though, if the objective is to achieve actual increases in service and quality of service (as opposed to a campaign about principle) then we need to acknowledge just how difficult the current situation is for the whole of the NHS.

I think you are perhaps west of Offa's Dyke ? - in which case you are no doubt aware of the regional level of concern about changes to NHS services overall and how difficult it is to persuade people that there are more effective ways of delivering care. The reality that fixed budgets mean that any new service requires cuts in other areas of current spending. It doesn't matter what dictats come from Cardiff Bay or how many 'task and finish' directives the Health Minister puts out, if the local Health Boards are sqeezed (and they all are) then the room for manouvre is very, very limited. As far as I can tell there's been no increase in service provision in Wales since the 2010 report was accepted by the Health Minister and the financial position in every Health Board has worsened.

The new commissioning arrangements in England may allow local M.E/CFs activsm to actually influence new service provision - but this will be patchy, because of the huge differences in ill health burdens between different areas, and in any case will require activists to be very pragmatic over what is provided where. I can't see Central Government agreeing to ring fence a central fund while the new commissioning arrangements are bedding down ( or producing lasting harm - depending on your perspective) and it's when the inherent problems of the new system are made evident will there be any chance of getting a central fund agreed (probably after the next General Election).

That doesn't mean I'm suggesting folks do nothing - but we need to recognise what needs to be done as a principled stand and what is realistically achieveable in the short and medium term, and how principle and pragmatism are to be matched. Otherwise we risk not just being disappointed but left looking rather silly as well.

IVI

 

[barbc56]

Yeah, it is a start. Maybe "close but no cigar"?

How do these numbers match up with other illnesses? That would give an even clearer picture.

Politicians love numbers!

Barb C.:

 

[alex3619]

Politicians mislead with statistics, everywhere. For an example, see the Spartacus Report which deals with disability related reform in the UK:

http://wearespartacus.org.uk/spartacus-report/

What governments say, and back up with official statistics, may not reflect reality.

 

[barbc56]

Yes the government can and most likely does misconstrue or use statistics to their advantage. That goes with the territory and I don't know why people are surprised about this. But it doesn't mean we shroud give up on collecting data. At least it's out there for the general public and others to see which increases the chances that the statistics can be challenged, if necessary. This is why transparency is vital in science. When information is available to all, the more accurate it may become, but as in life, there are no promises that this will happen.

Be forewarned, I'm just using the following as an example. Could the same type of criticisms be said, whether deliberate or not, about the conclusions of the mecfs action report since it doesn't compare the statistics with other illnesses? Personally at this point haven't researched this enough to make an informed opinion.

It's important to try to apply the same set of critical thinking skills to all sides of an issue before forming an opinion. That opinion may evolve as more information is gathered. And yes we do need to consider what we patients are saying as part of the equation.

Just because I might come up with a different conclusions as to how nefarious Wessly et. al. are, this is not necessarily the same as how I feel about the way we've been treated as well as my views on CBT/GET.

But I do think that applying critical thinking skills and stating our case in as concrete terms as possible, is the way to go with our advocacy if we want any credibility.

For lack of a better phrase, what's good for the goose is good for the gander.

Barb C.

 

[alex3619]

Hi barbc56, one thing I completely agree on is a need for transparency. The UK government is considered by some to be one of the most opaque in the western world, though this is improving. Its not just scientific transparency we need though, its transparency at all levels that regulate medical response (and for the rest of society, all govenment and associated institutions). If the information were public to start with, without a need for an FOI, government would be more transparent, more accountable, and more trusted.

Similar arguments can be made for every country in the western world, though I don't know any country that is as bad in this respect as the UK that would be considered an advanced country. Systems of accountability have been slowly failing for decades, but due in part to the internet there is renewed interest from the public in making everything accountable. We can make that happen, as the public, but its not going to happen fast.

I may blog on these issues next year, though my next two blogs may touch on this briefly.