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House of Lords - Neurological Services Debate - 20 November 2012

Firestormm

Senior Member
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I can't see this on Democracy Live unfortunately, so only have the Hansard Text link for now. The Countess of Mar fires a couple of broadsides although the answer from the Govt. health spokesperson doesn't address them directly. Possible of course we will hear about a written answer.

Apologies in advance for the full text answer. I'd rather have listened to the debate. Reading this stuff is useful for quotes and context I suppose but such a pain in the arse! :)

I suspect Bob will be sending a Xmas card (see bold) to Lady Mar this year!! :)

Health: Neurological Services

Question for Short Debate
7.30 pm

Asked by Baroness Ford

To ask Her Majesty's Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom.
...

20 Nov 2012 : Column 1791

The Countess of Mar: My Lords, like other speakers, I am grateful to the noble Baroness, Lady Ford, for raising this subject today. She has asked several very valid questions, as have other speakers, and I hope that the Minister will be able to answer them all.

While the noble Baroness, Lady Ford, has specified epilepsy services in her Question, I realise that she is aware that epilepsy is far from being the only neurological service that has inadequacies. For many years, I have worked with people with ME, also known as CFS/ME.

I am chairman of Forward-ME, vice-chair of the All-Party Parliamentary Group on ME and patron of a number of ME charities. Forward-ME is a member of the Neurological Alliance.

I have been assured that Her Majesty's Government accept the WHO's categorisation of ME as a neurological condition. The CMO report of 2002 described it as a "genuine illness" which,

"imposes a substantial burden on the health of the UK population".

The NICE guideline of 2007 stated that:

"The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions".

Yet there is no provision to examine the neurological aspects of this illness. Patients are simply allocated to either the CFS/ME group, where they are offered psychological therapies, or to various ad hoc diagnostic categories containing patients with neurological symptoms of unknown aetiology. In practice, these can be considered dustbins where no further investigations are considered necessary.

After the Chief Medical Officer's report on CFS/ME in 2002, £8.5 million was allocated to setting up specialist ME centres. Some of the centres have closed because of a lack of funding. Others continue to operate but are somewhat constricted by the view that the only scientifically validated treatment for the condition is a combination of cognitive behaviour therapy and guided exercise training-CBT and GET.

In fact, the much trumpeted PACE trials, which cost the taxpayer some £5 million and were intended to demonstrate the effectiveness of these so-called treatments, did no such thing. There is no indication in the trial results that one single person fully recovered after a year of CBT and GET. There is no indication that any who were not working went back to work or, in fact, that there was more than a very modest improvement in those whose health was deemed to have improved.

I would like to be able to go into the facts behind this research in more detail, but this is not the occasion. However, I must say that the spin on the results has had a very deleterious effect on the public perception of the illness and on the provision of health and social care for people with ME.

What is happening to these frequently very sick individuals? There is still a great deal of scepticism surrounding the reality of this illness, despite pronouncements from government, the CMO and NICE.

20 Nov 2012 : Column 1792

It is acknowledged that if the condition is caught in the early stages and dealt with conservatively, it can improve and patients can recover. Instead, patients and, particularly, children are pushed by medical practitioners or, in the case of children, by teachers, social workers and carers, to keep going to work or school on the basis that it is good for them, until they collapse and what was a mild, treatable condition becomes chronic and untreatable.

They are then encouraged to undertake programmes of cognitive behaviour therapy and guided exercise training which, at best, may help them to cope with their illness or, at worst, may exacerbate their symptoms, and they are blamed for not wanting to get better.

The Neurological Alliance is concerned that for clinical commissioning groups which cover relatively small population areas, it will not be cost-effective to commission services for less common conditions. I am particularly concerned about ME because GPs will do the commissioning.

The Neurological Alliance suggests that the NHS Commissioning Board should monitor the observance and development of collaborative arrangements to prevent what we have come to know as a postcode lottery.

I have spoken about the poor levels of understanding of ME among health and social care professionals. This runs through much of neurology. Lyme disease, for example, is often mistaken for ME, and no treatment is offered as a result, yet with simple antibiotic treatment, Lyme disease can be cured.

There is a need to equip properly commissioners in order to address successfully the legacy of neglect which has resulted from the complexity and relative rarity of most neurological conditions. There is a need for a national neurology strategy, as other speakers have said, dedicated national leadership and mandatory quality, accountability and incentive mechanisms.

The Neurological Alliance recognises that cross-cutting initiatives can help to support, develop and enhance services for people with long-term conditions, but it is concerned that the NHS Commissioning Board takes only a generic approach to certain long-term conditions while giving particular attention to others and that commissioners' priorities will be weighted in favour of areas given a profile.

Will the Minister say what guarantees there are that patients with less well recognised conditions, or conditions such as ME and Lyme disease, will be given equal treatment?

NICE, the Department of Health and the National Quality Board have yet to establish how they will prioritise the development of more than 160 quality standards. This will have the effect of prolonging neglect in areas without NICE-accredited guidance- ME is an exception as there is guidance-leaving commissioners unsupported in what are often the most complex and challenging areas.

As other speakers have already asked, is the Minister able to enlighten the House on the likely progress?
8.24 pm

http://www.publications.parliament.uk/pa/ld201213/ldhansrd/text/121120-0002.htm#12112060000395

8.31 pm

Answer:

Baroness Northover:
Government spokesperson for Health

My Lords, like other noble Lords, I pay tribute to the noble Baroness, Lady Ford, for tabling this Motion and for her very effective introduction. I know how important this subject is to her. I am also very well aware of her excellent work with the All-Party Parliamentary Group on Epilepsy and with Epilepsy Action to improve care and support for people living with this condition. Like others, I must declare an interest, as I did two years ago, that I have two close relatives living with epilepsy.

As ever, this has been an extremely well informed and wide-ranging debate, which has raised issues across a range of neurological conditions. In November 2010 I was in the fortunate position to be able to answer an equally illuminating debate put down by the noble Baroness, Lady Ford, to which she and the noble Lord, Lord Patel, referred.

I know that she has been somewhat busy with one or two things since then, including the Olympics, but I am glad that we are returning to putting an emphasis on this issue.

I assure the noble Lord, Lord Patel, that, in being briefed on this subject, one of the first things that I did was to ask what I had promised two years ago and what had been delivered, and I hope that I can provide some reassurance. I cannot guarantee that I will not overrun, but if I do not answer all the questions asked by noble Lords-there have been a multitude of them-then I will write to them.

20 Nov 2012 : Column 1796

This evening, we have heard that the challenge posed by neurological conditions is huge. Taken together, they are common: more than 10 million people in the UK live with such a condition. As noble Lords have indicated, they can give rise to complex needs that require support from a wide range of professionals. They also can change people's lives profoundly. We have heard that neurological conditions have not always been well served in recent years, which, once again, as it was two years ago, was reflected in many of the speeches tonight.

Since then, the Public Accounts Committee has reported on neurological services, and the noble Baroness, Lady Ford, and others made reference to that. That report, which was published earlier this year, clearly argued that we need to do more to improve the quality of services.

We have already responded to that report and we take its recommendations very seriously. Some of the issues that were flagged up had been flagged up before, and work is already under way to improve neurology services.

As noble Lords well know, it has been argued for years that better integration between health and social care is vital in this area, as in so many others. That is something that we are working hard to achieve; my honourable friend Norman Lamb has it at the top of his agenda. Better integration of health and social care offers a real opportunity to improve care and support for people with complex needs.

The noble Baroness, Lady Ford, and others made reference to the current changes in the health service. Locally, joint health and well-being strategies will, as noble Lords know, set out how local commissioners will work together to deliver the best possible outcomes for their communities. Health and well-being boards will bring together local partners to address the wider determinants of health such as education, transport and housing. So there are new opportunities there.

The Health and Social Care Act 2012, the outcomes frameworks for the NHS, adult social care and public health, the NHS constitution, the mandate we have just heard about and the draft Care & Support Bill all emphasise how collaboration between local government and the NHS is crucial to the future success of health and care systems locally. We are working to identify barriers to integration-those who were at the King's Fund breakfast the other day will have heard how people across the spectrum are seeking to do that-and the means to encourage integration, which will seek to ensure that the patient is the focus, whatever complex needs they have.

Integrated care will also be the key theme of the outcomes strategy for long-term conditions that we are developing. The strategy will take a life view of long-term conditions, looking at issues across the course of a person's life, and will set out what local government, the NHS, communities and individuals themselves can do to improve outcomes. In addition to integrated care, the strategy will be structured around the goals of early diagnosis-again, noble Lords made reference to that-promoting independence and taking steps to support those with long-term conditions to live as well as possible.

20 Nov 2012 : Column 1797

The PAC's report in particular identified a lack of neurological expertise in developing services. In the current system, clinical networks have been responsible for sustained improvements to particular care pathways or for particular groups of patients. Noble Lords made reference to that too. They have raised standards, supported easier and faster access to services and encouraged the spread of best practice.

We are committed to ensuring that in the new system this way of working and delivering services is maintained, and that we build upon the progress that has been made. In July the NHS Commissioning Board Authority announced the establishment of four new strategic clinical networks, including one covering dementia, mental health and neurology.

The network will help to improve outcomes for patients across England by ensuring that the NHS Commissioning Board and clinical commissioning groups have access to expert clinical opinion about the way that care should be planned and delivered.

Quality standards, to which noble Lords have also referred, published by the National Institute for Health and Clinical Excellence, will also play a central role in the new health and care system by providing patients and the public, health and social care professionals, commissioners and service providers with definitions of high-quality health and social care.

We have asked NICE to develop a number of quality standards that are neurologically focused. Noble Lords also made reference to them, and I shall come back to them in a minute. These are already in development and, additionally, people with a neurological condition will benefit from cross-cutting quality standards.

I want to try to address a number of noble Lords' questions at this point. The noble Baroness, Lady Ford, raised a number of specific questions. She asked about individual care plans. I assure her that personalised care planning is already being delivered. She also asked what was happening with regard to quality standards. A clinical guideline on assessment is to be developed, and from this we can develop a generic quality standard.

The noble Baroness asked about the continuation of the PAC recommendations on progress and wanted to know about driving up quality. The mandate to which people have referred emphasises what is important for people with long-term conditions. Irrespective of the nature of that condition, the focus is on how you try to ensure that people with long-term conditions are supported and how they would best manage their conditions. Taking it in a generic way, you try to ensure that you do not exclude other long-term conditions that we have not been talking about this evening, but obviously these ones would be included in that approach.

A number of noble Lords referred to data. The NHS Commissioning Board is working with the Neurological Alliance to develop a data set. It is extremely important that the information is there because, as noble Lords have said, unless you understand the nature of the problem-where you have patients, what treatment they are receiving, and so on-you cannot take forward what you wish to achieve. When I first became involved in this area, I was astonished at the lack of information on particular conditions around

20 Nov 2012 : Column 1798

the country. That is something that the previous Government, and Governments before them, must take responsibility for. I am not at all surprised that the noble Lord, Lord Darzi, started to try to draw up atlases of diseases and outcomes and suchlike. To me as a former academic, it was astonishing that that kind of information was not there before. I assure noble Lords that this Government are taking that forward, but I would pose a criticism to previous Governments for not having done that basic work.

The noble Baroness, Lady Ford, asked about clinical commissioning groups taking specialised commissioning seriously, as did my noble friend Lady Jolly. It is extremely important. The neurological charities and organisations are providing support in this area, and I welcome that; they are supporting commissioners to understand the complexity of support and services needed, and the Department of Health has funded neurological commissioning support to work with the CCGs. I hope that that will pay dividends.

My noble friend Lady Jolly asked about the national strategy to help with the diagnosis of epilepsy. Quality standards are due for publication in February which will cover referrals to specialists and timely access to diagnostic tests, which we hope will improve things.

The noble Baroness, Lady Masham, asked about MMD guidance and various aspects to do with that, including the development of drugs. The UK rare diseases plan, which will be implemented before the end of 2013, will be looking at drugs for rare diseases and the research needed to bring them to market. She is quite right that, as in developing countries, rare diseases do not bring in the kind of investment that is needed in these areas. That is something that we are looking at.

We continue to review how NICE is taking things forward, and, of course, NICE itself reviews its workload and how it is managing it. Clearly, those who are concerned about other diseases are equally concerned that their NICE proposals are expedited. It is extremely important that NICE carries this forward as rapidly as it can, but it needs to balance that with its other workload. We recognise the importance of specialist nurses-a point made by the noble Baroness, Lady Masham. They help to achieve significant cost savings, and the Royal College of Nursing is at the moment looking at the value of specialist nurses and will help service commissioners in trying to understand what is required and what the workforce needs to be.

The noble Lord, Lord MacKenzie, asked a number of questions, some of which I have dealt with in my previous answers. He wondered whether the PAC recommendations would be revisited. No doubt the noble Baroness, Lady Ford, will have another debate, which I will no doubt answer, but I can say that the PAC has been asked by the National Audit Office to follow up on its report in 2014.

In terms of clinical leadership, the NHS Commissioning Board is determining how to structure national clinical leadership and advice within the board, and further announcements will be made shortly. I note that Dr Martin McShane, who has been appointed as the lead on long-term conditions, met the Neurological Alliance on 12 September, so I hope that that is encouraging to those who are concerned about leadership.


20 Nov 2012 : Column 1799

The noble Lord, Lord Patel, raised a number of questions that he had put to me previously. In terms of better services for children, subject to regulations being laid, children's neuroscience services will be commissioned by the NHS Commissioning Board, which will promote greater consistency.

The children's health outcomes framework, which will be published by Christmas, will support the delivery of better children's services and better outcomes. The noble Lord asked whether that would be carried over to adults, and I will get back to him about that.

With regard to following the NICE guidelines, I remind him that they are advisory, not mandatory. Clinicians are free to adapt the guidelines. However, in a transparent system where those guidelines are known, that, too, puts pressure on the clinicians via the patients and certainly by the specialist organisations, which are clearly so well aware of what is required.

I have talked about the NHS Commissioning Board developing data sets and how astonished I was that they did not exist in a previous era.

The noble Baroness, Lady Gale, asked whether Parkinson's and other diseases could be prioritised. All conditions will have equal priority under the new system. For those who are concerned about so-called Cinderella conditions, that should be an encouraging answer, although those who feel that the diseases that they are particularly concerned about get a lot of focus already might be a bit concerned. All conditions will have equal priority, so Cinderella conditions should be improved.

I conclude by assuring noble Lords that there is a real commitment within the Government to address the challenges identified this evening, with the support of the NHS Commissioning Board and generally within the health and social care sectors. We recognise that much still needs to be done, but our primary goal is the same: to improve the patient experience and outcomes, and to bring real benefits and real change to the lives

20 Nov 2012 : Column 1800

of people living with neurological conditions. I am very sure that the NHS Commissioning Board will have heard what noble Lords have said in this debate.
 
Messages
646
Mar's 8 minutes didn't warrant even an acknowledgement from Northover - I wish she (Mar) didn't suffer so badly from Hooper's Disease - it needs a deftly wielded scalpel to expose the Government flesh - not a sandbag.

IVI
 

Firestormm

Senior Member
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Location
Cornwall England
Methinks (well methinks with difficulty at the moment :)) but methinks that without Lady Mar in da House ;) we wouldn't get ME on any agenda. And more relevant to debates like this, we could risk losing our tentative association with other neurological conditions - in political debate at least.

That's not to say I don't concur with the Hooper-disease sentiment (having re-read the comment above and figured out what was meant :)).

Now. Let us all link-hands and celebrate the finding of the above debate by Fire on Democracy Live. Don't all feint at my technical ability this morning - although I may well do :)


http://news.bbc.co.uk/democracylive/hi/house_of_lords/newsid_9770000/9770956.stm
 
Messages
646
Methinks (well methinks with difficulty at the moment :)) but methinks that without Lady Mar in da House ;) we wouldn't get ME on any agenda. And more relevant to debates like this, we could risk losing our tentative association with other neurological conditions - in political debate at least.
You are quite right - though that doesn't exactly fill me with confidence. Given an Elected Upper House is drifting ever into the future, there's definitely a need to recruit the interest of one of the current appointees.

For thse who don't want to watch the whole thing, Mar comes in at 47 minutes. Maggie Wheeler follows directly from Mar and is worth listening to for details of how grim things actually are. Wheeler also thanks a number of advocacy orgs for their contribution - no mention of any M.E/CFS orgs !? Missed opportunity ?

Now. Let us all link-hands and celebrate the finding of the above debate by Fire on Democracy Live. Don't all feint at my technical ability this morning - although I may well do :)
http://news.bbc.co.uk/democracylive/hi/house_of_lords/newsid_9770000/9770956.stm[/quote]
Horray !

IVI
 

Firestormm

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Location
Cornwall England
You are quite right - though that doesn't exactly fill me with confidence. Given an Elected Upper House is drifting ever into the future, there's definitely a need to recruit the interest of one of the current appointees.

For thse who don't want to watch the whole thing, Mar comes in at 47 minutes. Maggie Wheeler follows directly from Mar and is worth listening to for details of how grim things actually are. Wheeler also thanks a number of advocacy orgs for their contribution - no mention of any M.E/CFS orgs !? Missed opportunity ?

I listened to most of it earlier. Need to listen to the rest tomorrow. There were some good contributions to the debate that will affect those with ME from the perspective of maintaining the link to neurology - if what is being asked for (from memory) care plans, centrally accountable neurological commissioner, local neurology commissioners (and other stuff I will note later).

To be honest, I've been involved (in a limited way) with 'neurology' and the neurological alliance and locally with other neurology advocates - and - well - as was said several times in this debate - I'm kind of fed-up banging me head against the wall.

The debate from 2 years ago for example (http://news.bbc.co.uk/democracylive/hi/house_of_lords/newsid_9080000/9080032.stm) referred to in the one the other day - raised issues that STILL have not been addressed.

There has been repeated acknowledgement of the problems by government, health service and commissioners - but nobody seems to have done anything about them.

There has been 'progress'. Neurology will be recognised as a separate entity by one of the central commissions now, but the e.g. National Service Framework for Long term conditions (read Neurological Conditions) which recognised ME - published in 2005 - highlighted all the 'failings' in health and social care - and here we are in 2012.

Talk about frustrating. 8-10 million people with a neuro condition. High levels mind of misdiagnosis across the board - high levels of ignorance - in fact if you listen to this mini-debate you will hear how you can align ME with many if not all other neurological conditions.

Whatever you think is 'wrong' about health and social care for ME - is wrong for other conditions too: including a lack of treatment and understanding. My perspective has ever been one of maintaining the link of ME with other conditions in order that 'we' i.e. 8 million of us together might actually make better progress (10 million including Migraine from memory).

All of the things IVI you have said recently (that I have agreed with) about for example how ME isn't terminal, how 'we' don't get enough of a profile in terms of 'brand recognition', how we don't 'appeal' to public sympathy etc. well other conditions DO.

Aligning ourselves and maintaining this connection - can only do 'us' good. Long-term and short. With local GP commissioners 'we' must maintain the recognition that ME should be placed alongside other long term conditions and that long term conditions need unique treatment and service commissioning...

Ran out of steam. Back later :)
 

Quilp

Senior Member
Messages
252
To be honest, I've been involved (in a limited way) with 'neurology' and the neurological alliance and locally with other neurology advocates - and - well - as was said several times in this debate - I'm kind of fed-up banging me head against the wall.

Will someone help Firestormm with his penchant for banging his head against walls, before his limited way with 'neurology' becomes, well, even more limited :)
 

maryb

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Thanks for the link fire however you said,

'All of the things IVI you have said recently (that I have agreed with) about for example how ME isn't terminal'
I really have to disagree most strongly with both of you on that one. Maybe not for us(yet) but for some it has been and will continue to be for others.
 

Firestormm

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Thanks for the link fire however you said,

'All of the things IVI you have said recently (that I have agreed with) about for example how ME isn't terminal'
I really have to disagree most strongly with both of you on that one. Maybe not for us(yet) but for some it has been and will continue to be for others.

Mary. ME is not recognised as being a 'terminal condition'. When compared to for example Motor Neurone Disease which - from the debate above - will result in death within less that 18 months (if my memory serves), ME is not terminal.

If ME were terminal then people with ME would (small compensation) have a much easier time with for example benefits and social care - or at least that is the (incorrect) assumption of many I suspect.

If ME were terminal the 'public image' might generate more empathy. I say 'might' because Motor Neurone Disease remains (as you would have garnered from the debate) very poorly treated overall. However, if ME were terminal, with the prevalence figures our condition engenders there would I expect be a rather more considerable outcry.

In terms of the very few deaths that have had ME or CFS recorded on death certificates world-wide, our condition is not recognised as a terminal disease.

Debilitating? Most definitely. Hell, even NICE recognise that:

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. CFS/ME places a substantial burden on people with the condition, their families and carers, and hence on society.

http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53

As you will have heard in the debate above, MND doesn't even have a NICE Guideline, doesn't have the kind of resourcing that one might expect from a terminal condition. The kind of resourcing that some people would think should be automatically apply to a terminal condition.

The whole point of the debate was - to me - that even such condition as MND are under-resourced, under-recognised and leave patients without the degree of care and support that even the most ardent Daily Mail reader would expect.

In previous threads we had been discussing what is wrong with ME advocacy. You have to remember that there are diseases out there that even come under the category of Neurology, for which there is a distinct lack of support about which there is more knowledge.

Until such time as someone is better able to decide what it is that's happening in terms of disease causation and progression in people who have a diagnosis of ME - until that aetiology is agreed and better diagnostic measure are brought in to play - even after all that occurs - we will still not see the gates open and things improve. Not if the experiences of those others with condition like MND are anything to go by.
 

maryb

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'In terms of the very few deaths that have had ME or CFS recorded on death certificates world-wide, our condition is not recognised as a terminal disease'

Sorry fire statistics don't mean anything to me, in my simple world ME can be a terminal illness, I'm not debating, too unwell for that, pre-ME I would have enjoyed it, but thats just how I see it now. I understand that opinions put simply like this can irritate people who want to and are capable of greater debate so I'll leave it there.
 

alex3619

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Logan, Queensland, Australia
Firestormm, I have long agreed that we need to broaden our collaboration and include other neuroimmune diseases at least, and probably a much wider range of diseases. Many of these diseases including Lyme Disease receive insufficient attention, and the barriers and problems are very similar to what we face. Dealing with these problems with more unity can only be a good thing. So I am happy that you are making connections with neurological diseases groups and advocates. We need more of that. I will have much more to say on this in time, but my blogs relating to this are not ready yet.
 

Firestormm

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Firestormm, I have long agreed that we need to broaden our collaboration and include other neuroimmune diseases at least, and probably a much wider range of diseases. Many of these diseases including Lyme Disease receive insufficient attention, and the barriers and problems are very similar to what we face. Dealing with these problems with more unity can only be a good thing. So I am happy that you are making connections with neurological diseases groups and advocates. We need more of that. I will have much more to say on this in time, but my blogs relating to this are not ready yet.

One of the problems is though Alex, that whilst we perceive our care and treatment to be 'bad' and treatment and care for other neurologically categorised conditions to be 'better' - they often aren't. Involvement of the voluntary sector is as essential for care in this 'climate' for conditions such as MS (from personal experience) as they are for ME (in my reluctant opinion).

With great anger - I am coming to the reluctant conclusion that unless 'we' do something about care and treatment ourselves - or become more engaged with those who attempt to and are part of the NHS - then things will simply not improve to the degree that as patients, carers and family members - we deem essential.

We can't go it alone. In my opinion we need to maintain this link, to join-up with other neurological conditions, and, where we can, form joint working partnerships with NHS (and even private (though centrally funded perhaps), providers of healthcare. There are many common symptoms that are treated similarly across this broad spectrum, that involve the same healthcare professionals.

Look, I am limited by my condition, first to admit it (though perhaps not enough some times), and the notion I was working on a one point, was a 'neurological centre' catering to all. It would be a MAMMOTH undertaking, delivered locally - it couldn't be across the nation. There have been some centres already established (one in .... hell I can't remember... up north somewhere) - but it won't be something that the NHS get behind on their own.

It will need to be driven by like-minded individuals who are capable of seeking the funding and willing to work WITH the NHS and Dept. of Health and all the bureaucracy in-between.

Seeking voluntary commitment and involvement because the NHS and Government fail is something absolutely abhorrent to me. But I don't think we will have a choice. We simply will NOT be able to dictate 'terms' however - it is essentially (for part-funding alone) and for the provision of healthcare professionals - as well as for e.g. data-collection at source (see e.g. debate above and my previous references to this) - that we work together and not seek 'quick-fixes' based on the loudest opinion.

Having said that - my opinion seems to be loudest on this thread ;)
 
Messages
646
There has been 'progress'. Neurology will be recognised as a separate entity by one of the central commissions now, but the e.g. National Service Framework for Long term conditions (read Neurological Conditions) which recognised ME - published in 2005 - highlighted all the 'failings' in health and social care - and here we are in 2012.
One of the effects of 'austerity politics' is the production of a progressive 'schizophrenia' on the part of the politicians, where endless intitiatives are announced but where there is no money to support the change. The Government's view is that efficency will produce more for (even) less with no recognition that change involves cost. Apart from Wheeler's (somewhat oblique) comments no one in the parliamentary debate got to grips with the harsh reality, that more resources for Neurology means (at least in the short term) less resources for other areas of medicine. Without someone in Government with the 'spine' (irony intended) to actually carve out more money for Neurology, not only will there be another 7 years with little change, but with no new resources the question has to be asked - why would neurology want to accept the M.E/CFS burden given that psychiatry has been so ready to have M.E/CFS on its lists ? If we wat M.E/CFS treated as though it is primarily 'neurological' (no argument surely ?) then enhacing neurology as whole has to be a key objective for M.E/CFS advocacy
All of the things IVI you have said recently (that I have agreed with) about for example how ME isn't terminal, how 'we' don't get enough of a profile in terms of 'brand recognition', how we don't 'appeal' to public sympathy etc. well other conditions DO.

Aligning ourselves and maintaining this connection - can only do 'us' good. Long-term and short. With local GP commissioners 'we' must maintain the recognition that ME should be placed alongside other long term conditions and that long term conditions need unique treatment and service commissioning.
I suppose we have to be cautious in that this discussion is specific to the UK – but within that limited context at least, the co-operative approach has significant implications for how advocacy is conducted. Not only are there the inherent concerns about quality of communication with the audience – but sensitivity to the positions of partner organisations/groups is essential. No organisation is going to maintain co-operation with a bunch of (perceived to be) ‘crazies', whose agenda is opaque and whose activities lack credibility with the common objective audiences.

M.E/CFS advocacy probably has a long way to go in demonstrating to potential partners, that it is a serious participant in wider health advocacy. Reports of harassment and an ill focused dispute with a whole area of medicine might well raise concern with those organisations which have established track records of consistent engagement with the target audiences. Having already established a less than productive relationship with mental health advocacy, failure to properly engage with the greater body of Neurological advocacy, could leave M.E/CFS as the Millwall of UK health advocacy.

How this plays out in other countries/cultures needs specific discussion. But if the focus is on decisions taken at Westminster, or by the NHS bureaucracy or the local commissioning boards (in England) or the respective commissioning structures in N.I, Scotland and Wales, then the specific circumstances must be taken into account. Reliance on some ‘globalised’ notion of advocacy would lead to inevitable failure.

IVI
 

Firestormm

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Further to my last. These were discussed on BBC Today's programme this morning. If they are able to be extended to cover healthcare - or indeed if a healthcare initiative could embrace wider social concerns in some way - then they might be a means of additional funding opportunity. Note also that such things are being actively considered by the Americans too:

http://www.guardian.co.uk/society/2012/nov/23/social-impact-bond-teenagers-homelessness

...Social impact bonds are based on the idea that investors are taking a risk with their cash since if the outcomes do not match expectations they will lose their investment.

Britain is seen as an international trailblazer in this form of social impact bonds, of which there are 10 in the UK, including the first set up in Peterborough jail. The proposals have attracted the interest of the White House as well as across Europe.

In a bid to spread the idea through Whitehall, the government announced it had agreed to set aside £20m in a new social outcomes fund to help speed up the deals, and release a further £60m in private sector investment.

The civil society minister, Nick Hurd, justified the taxpayer cash injection on the basis that if the schemes work, resulting in fewer children in care or left homeless, there would be a wider saving to the taxpayer across more than one government department.

The scheme has been regarded as sufficiently important to involve both the prime minister and the cabinet secretary, Sir Jeremy Heywood....

...Government data collected in October and November 2011 estimated that £9bn is spent annually on troubled families – an average of £75,000 per family each year. By intervening early to tackle the problems before they spiral out of control, the existing and recently announced social impact bonds will improve over 10,000 people's lives as well as save taxpayers money.

Cameron praised the breakthrough saying: "Britain is a world leader in using finance to help grow a bigger, stronger society. We launched the world's first social investment bank – Big Society Capital – and we invented the world's first social impact bond in Peterborough to tackle reoffending.

"I'm delighted that we're taking another lead today in launching the social outcomes fund, which will enable more innovative social impact bonds like the two announced today. By providing new forms of finance to invest in more early intervention programmes we can help the most vulnerable and reduce demands on the state."

Nick Hurd, the minister for civil society, said: "Social impact bonds are opening up serious resources to tackle social problems in new and innovative ways. This is about communities, businesses and charities all working together to change people's lives, whilst at the same time making savings for the taxpayer."

Sorry. Probably takes us on a whole new debate. Will be listening to the remaining part of the House of Lords debate later today I hope. Will post some extracts if I get round to it :)
 

Enid

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There are people like the Countess of Mar trying their very best for real recognition of ME - that is the point. The Lords will take longer.