Countess of Mar debates M.E. in Lords
21 November 2012
The Countess of Mar raised the ignorance, injustice and neglect of M.E. during a debate in the House of Lords yesterday.
Speaking in response to a question for short debate, asked by Baroness Ford about what progress had been made in improving neurological services, Lady Mar raised about the inadequacy of service provision for M.E. patients and poor levels of understanding of M.E. among health and social care professionals.
The Countess of Mar spoke about ME/CFS, including specialist ME centres throughout the UK, and the PACE trial, in the debate on Neurological Services
in the House of Lords on 20 November 2012.
Hansard - House of Lords debates
www.parliament.uk/business/publications/hansard/lords/ Lords Hansard - 20 Nov 2012
[the following includes extracts from the response - at the end]
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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.
8.16 pm 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.
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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?
Extracts from the response -
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.
… … … … … … 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
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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.
House adjourned at 8.48 pm.