The Countess of Mar, UK
The Countess of Mar sent a written question # HL685 to the Depart. of Health on July 11, 2017
“Her Majesty's Government whether they have any plans to set up an independent review of ME & CFS services which includes an epidemiological study to establish the true incidence of ME & CFS in the population & the impact of the shortage of doctors trained in this specialism; and, if not, why not.”
The question was answered by Lord O'Shaughnessy on July 19th, 2017
“There are no plans to set up an independent review of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) services. Services for patients with CFS/ME are supported by independent, evidence-based guidance produced by the National Institute for Health and Care Excellence on the diagnosis, treatment and support of patients with the condition. Commissioners should deliver services that meet the needs of local populations. Assessments of service need for CFS/ME may be supported by the available population prevalence estimates as required.“
http://forums.phoenixrising.me/index.php?threads/countess-of-mars-formal-complaint-to-the-bbc.47884/
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Health: Medically Unexplained Symptoms, Question in the House of Lords 2:37, July 4th, 2017
Question: Countess of Mar, the Deputy Chairman of Committees, Deputy Speaker (Lords) asked Her Majesty's Government who is responsible for ensuring the implementation by Clinical Commissioning Groups and hospital providers of the Guidance for commissioners of services for people with medically unexplained symptoms, published by the Joint Commissioning Panel for Mental Health.
Answer: Lord O'Shaughnessy, the Parliamentary Under-Secretary of State for Health replied “My lords, the Joint Commissioning Panel for Mental Heal is not a government body and implementation of the guidance that it published is not mandatory. Regarding the classification of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, or CFS/ME, the Government accept the World Health Organization's classification of the illness as a neurological condition of unknown origin.”
Countess of Mar: My Lords, I am grateful to the Minister, although I am disappointed that we cannot pin anyone’s foot to the floor on this. There is no definition of medically unexplained illnesses in the paper mentioned in my Question, but in interpreting it, hospitals and other providers have somehow made CFS/ME a medically unexplained symptom and have recommended graded exercise and cognitive behavioural therapy as treatments. Graded exercise in many cases is known to make people sicker and to damage them, the scientific reasons for which are also known. Cognitive Behavioural Therapy has been shown to work for only about six months. The PACE trial which recommended Cognitive Behavioural Therapy and Graded Exercise Therapy is now discredited, and NICE is reviewing its guidelines on it. Who is responsible for worsening the condition of patients who are advised or coerced into taking CBT and GET?
Lord O'Shaughnessy: I congratulate the noble Countess on the important work that she does through Forward-ME on behalf of the illness’s sufferers. On who takes responsibility for the care of those suffering from CFS/ME, it is of course clinicians. They work to evidence of best practice, which is guided by NICE. She alluded to the fact that the NICE guidelines are being reviewed to make sure that we have the best possible understanding of what is effective in the treatment of the illness, but I reiterate to her the point that the Government’s acceptance of the WHO classification of it as a neurological disease has not changed.
Lord Hunt of Kings Heath: – Shadow Spokesperson (Cabinet Office), Shadow Spokesperson (Health), Shadow Spokesperson (Education). My Lords, the approach taken by the NHS and child protection services to CFS/ME and other unexplained symptoms has had a sorry history. Some clinical commissioning groups state with great authority that Graded Exercise and CBT are the appropriate response. The point made by the noble Countess is that in many cases they are not, and can cause damage. Unfortunately, where children are involved, patients who resist such therapies often find themselves in problems with child protection agencies—there was an excellent programme about this on Radio 4 over the weekend. Prior to the NICE guidance coming out, will the Minister look with his officials at whether CCGs might be given some rather more authoritative advice, because it is clear that some CCGs have got this wrong?
Lord O'Shaughnessy: I am certainly happy to investigate CCG practice and commit to write to the joint panel to make sure it understands both the nature of the classification of the illness and the fact of the NICE guidelines. Of course, those are guidelines for clinicians; they are not mandatory in themselves.
Baroness Jolly: Liberal Democrat Lords Spokesperson (Defense). My Lords, the commissioning of mental health services has a checkered past at best, particularly when involving many agencies such as in this case. However, good commissioning practice exists. What training is available for commissioners of such complex services and what opportunities are there for sharing innovative practice?
Lord O'Shaughnessy: Of course, a suite of training is available for those treating illnesses such as this one, which affects about 220,000 people in England. It is not a rare disease; unfortunately, it is far too common. That treatment is there and also a number of networks exist, such as the Academic Health Science Networks, to spread innovation and best practice for treatments around the NHS.
The Bishop of St Albans: My Lords, many of us are glad to have this report published by the Joint Commissioning Panel for Mental Health on services for people with medically unexplained symptoms. There is a welcome stress in it on trying to get integrated care—a both physical and mental approach. Would the Minister comment on the need to have an integrated approach to the spiritual dimension of this as an essential aspect of addressing these medically unexplained symptoms?
Lord O'Shaughnessy: Of course, the difficulty for sufferers of these illnesses is precisely the unknown origins of them. There are obviously physical aspects—that is the whole point of this being a neurological condition—as well as mental health aspects in terms of dealing with it. No doubt, spiritual guidance and uplift can help those dealing with these awful conditions.
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July 5th, 2017
Russell Fleming, Content Manager, ME Association.
The Countess of Mar was once again defending people with ME and CFS in the House of Lords yesterday, this time in a debate about medically unexplained symptoms (MUS).
The debate followed the publication in February of a report by the joint commission for mental health on medically unexplained symptoms, and it was in this report that ME/CFS was mentioned by way of an example.
Lady Mar raised a number of important issues, and again received confirmation from the Government that ME/CFS was recognized as a neurological condition in accordance with WHO classification, but as a disease with unknown origin.
She was not happy to learn that ME/CFS had been listed as a medically unexplained condition by some clinicians when no specific definition for MUS appeared to exist.
She said that in some instances the treatments were wrong, short-lived and potentially damaging to health, and that the PACE trial – which appears to have underwritten CBT and GET – had now been discredited.
In his reply, Lord O’Shaughnessey, The Under-Secretary for Health, said that it is for clinicians to determine how best to treat people with ME/CFS and that they should be guided by the best available evidence and by the NICE Clinical Guideline. He confirmed that the guideline for CFS/ME was under review but reiterated that as far as the Government was concerned, ME/CFS will continue to be regarded as a neurological disease.
Lord Hunt echoed Lady Mar’s concerns about CBT and GET but also raised the recent BBC Radio 4 investigation into child protection, and the fact that parents can find themselves referred to social services if these treatments are judged by them to be detrimental to their child’s health.
He asked if the Government might give stronger instruction to clinical commissioning groups to ensure they respect the rights of parents in these circumstances.
Lord O’Shaughnessey replied that he would write to the joint panel to ensure they are conversant with the guideline – though he seems to have stopped short from committing himself to investigating the specific issues of child protection raised by the radio programme.
My note: According to the NICE guideline on CFS/ME, “Healthcare professionals should be aware that – like all people receiving care in the NHS –people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.” I wonder if the same applies to parents of children who decide not to continue with what has been determined to be recommended treatment? There’s no separate guideline for young people, so I presume it must.
Russell Fleming, Content Manager, ME Association.
Baroness Jolly then managed to confuse the issue of MUS and ME/CFS once again by seemingly throwing it all together as a ‘mental health’ issue, asking about the commissioning of mental health services and training.
I thought I was in danger of losing the plot, but then Lord O’Shaughnessey cited the prevalence for ME/CFS and commented that it was a relatively common disease.
So whether we’re talking about ME/CFS coming under mental health and MUS for the purposes of this new initiative, but remaining under WHO as a neurological disease – for some other hidden, and not yet revealed, purpose – I really am none the wiser.
The comments from the Bishop of Albans inadvertently threw some light on it all when he said that the report was attempting to bring physical and mental health care together as ‘integrated care’ as he called it. Though I was bemused by his reference to spirituality.
Lord O’Shaughnessey ended this section of the debate by saying, “There are obviously physical aspects—that is the whole point of this being a neurological condition—as well as mental health aspects in terms of dealing with it. No doubt, spiritual guidance and uplift can help those dealing with these awful conditions.”
Of course people with ME/CFS will rightly clamour, ‘but where’s the physical care?’, however this argument seems to fly over the heads of those representing the department of health at least for the time being, and until perhaps bigger and better biomedical research can bring them around – or they can be made to see just how ineffective CBT and GET are for people with this disease.
As for the House of Lords, well I remain mighty glad we have the Countess of Mar fighting our corner. But it’s a sad fact that we have few able representatives in either the House of Commons or House of Lords. So if you’re able to engage with your representative, and you can win them around, then please be sure to let them know about it.