Countess of Mar slams PACE Trial results in Lords debate on neurological services | 20 November 2012

November 22, 2012


The Countess of Mar expressed a withering contempt this week for the results of the £5m PACE Trial which, according to supporters in its early days, would set ‘the gold standard' evidential base for the use of CBT and GET in the treatment of ME/CFS.

She had joined other peers in a short House of Lords debate called by Baroness Ford, president of Epilepsy Action, on Tuesday (November 20) that expressed concern about the slow rate of progress towards national and local leadership of NHS neurological services.

The Countess, founder-chairman of the Forward ME Group of voluntary organisations including the ME Association, told the House: “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.

“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

“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.

Baroness Ford, president of Epilepsy Action, said little had been done to implement recommendations to improve neurological services made in reports from both the National Audit Office and the Public Accounts Committee. There was still no national clinical lead for neurology and local provision was patchy.

Replying for the Government, Liberal Democrat peer Baroness Northover said there was still much to do but progress was being made. The new NHS Commissioning Board, for instance, had in July set up four new strategic clinical networks – including one for dementia, mental health and neurology. And the National Institute for Health and Clinical Excellence had been asked to develop a number of quality standards that were neurologically focused.


TEXT OF SPEECH BY 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. 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?


THE FULL REPORT OF THE DEBATE IN HANSARD CAN BE READ HERE.


4 thoughts on “Countess of Mar slams PACE Trial results in Lords debate on neurological services | 20 November 2012”

  1. Yet again, huge thanks are due to the Countess of Mar for her sterling work in parliament on our behalf. Once more, she hits the nail directly on the head and exposes the truth, never fearing to mince her words. Thank you.

  2. I forgot to post this – worth a look at:

    http://niceguidelines.blogspot.co.uk/2011/02/jan-2011-spanish-study-shows-that-cbt.html

    ” Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
    Núñez M, Fernández-Solà J, Nuñez E, Fernández-Huerta JM, Godás-Sieso T, Gomez-Gil E.
    Clin Rheumatol. 2011 Jan 15:

    At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. …..”

  3. I went to a couple of sessions of CBT in London where the lady who saw me made comments like M.E. is not life threatening/terminal, and that she knew people who had serious illnesses like cancer but they held down a job. Needless to say I did not go back. To all intents and purposes I looked fine from the surface but barely walked across the car park to sit on the kerb to wait for the bus as I had no strength to stand.

    But good to see on a positive note that plenty is being done to make others aware of the condition

  4. Why is the Government not banning the PACE trial authors from having any more funding for their failed pet theory? And why has an inquiry into the the PACE trial and the authors as documented by Professor Hooper not been instigated by the Government?

    Instead the National Institute for Health Research (NIHR) is now funding the GETSET study from Peter White at Barts, which is another GET study on fatigue. This is unacceptable. It is not in the interests of patients or the public. No public money should be spent on this. This GETSET study is unfit for purpose.

    Did Professor Dame Sally C Davis (CMO and CSA to the Department of Health) commission it? Is this who patients have to thank? She is after all head of the Department of Heath R&D, and is responsible for NIHR.

    This is GETSET for those who are not aware.

    “GETSET
    Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome/myalgic encephalomyelitis: a randomised controlled trial in secondary care”

    “Research Summary
    Chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME) is a chronic disabling condition of no known cause and with no established cure. It affects about one in a hundred people. The National Institute for Health and Clinical Excellence (NICE) guidelines on the management of CFS/ME recommend graded exercise therapy (GET) as one of only two treatments for which there is research evidence of benefit. In contrast most ME charities believe that GET can be harmful, and they do not recommend it. This study will test the acceptability, effectiveness, costeffectiveness and safety of Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with CFS/ME on treatment waiting lists at hospital clinics. GETSET has been designed to incorporate the best elements of GET provided by current and previous research trials, paying particular attention to safety and acceptability. Patients will be randomly allocated to one of two trial arms. In the first, participants will be sent a copy of a GET self-help guide and asked to follow it as described in a booklet. Patients will follow the six steps described in the GETSET booklet that will inform them how to use graded exercise or physical activity to feel less tired and reduce disability in a safe way. They will be given individual guidance either face-to-face or by telephone/Skype soon after being randomised and another 3 times in the following 8 weeks, by a physiotherapist experienced in treating people with CFS/ME, on how to use and implement GETSET. Those who feel the need may contact the physiotherapist thereafter. The second trial arm will continue to receive standard medical care (SMC) from their specialist doctor. We will ask people to rate their own health and disability at the end of the treatment period and also measure how much consequent treatment they receive afterwards, to see if those who had the GETSET need less face-to-face treatment.”

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