They work for you transcript of House of Lords debate, 4 July 2017: Medically Unexplained Symptoms
The Countess of Mar
To ask 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.
My Lords, the Joint Commissioning Panel for Mental Health 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.
The 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 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 cognitive behavioural therapy and graded exercise?
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 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?
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 guideless for clinicians; they are not mandatory in themselves.
My Lords, the commissioning of mental health services has a chequered 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?
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?
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.