Parliamentary Questions | training of doctors, access to specialist services, social care assessments | 12 May 2014

May 13, 2014

Annette Brooke MP (Mid Dorset and North Poole, Liberal Democrat, and chair of the All Party Parliamentary Group on ME) tabled this question to the Secretary of State for Health:

(1) if he will bring forward proposals for regulations to ensure that ME and chronic fatigue syndrome are included in all pre- and post-registration training of (a) GPs and (b) other health care professionals;

(2) what steps his Department plans to take to improve information and support for GPs regarding ME or chronic fatigue syndrome; and if he will take steps to improve access to specialist services for people with those conditions.

It was answered on May 12 (International ME Awareness Day) by Norman Lamb, (Minister of State, Department of Health; North Norfolk, Liberal Democrat), who wrote:

In 2007, the National Institute for Health and Care Excellence (NICE) produced the clinical guidance, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’. This guidance set out best practice on the diagnosis, treatment care and support of children and adults with CFS/ME. Information on CFS/ME diagnosis and treatment can also be accessed via the NHS Evidence and NICE Clinical Knowledge summaries websites.

The content and standard of health care professional training is the responsibility of regulators, such as the General Medical Council, which are independent statutory bodies. They have the general function of promoting high standards of education, working with the Royal Colleges, and co-ordinating all stages of education to ensure that students and newly-qualified professionals are equipped with the knowledge, skills and attitudes essential for professional practice.

The Government has mandated Health Education England (HEE) to provide national leadership on education, training and work force development in the national health service. HEE is responsible for ensuring that the future work force has the right numbers, skills, values and behaviours to meet patients’ needs today and tomorrow, and will work with stakeholders to influence training curricula as appropriate.

In another question also answered on May 12, Mrs Brooke asked the Secretary of State for Health what steps his Department is taking to improve access to social care assessments for people with ME or chronic fatigue syndrome.

Mr Lamb replied:

The Care Bill will require local authorities to provide information and advice on how to access care and support in their area including assessments.
The Bill will place local authorities under a duty to assess any adult who appears to have needs for care and support, whatever their level of need. The assessment will look at the person's needs and outcomes they want to achieve, and the person must be involved throughout the process. Authorities will have to ensure that anyone who is undertaking an assessment is appropriately trained to do so, and that where the assessor is not experienced in the condition of the person they are assessing, they must consult someone who is.
These measures will ensure that the person needing care has an effective assessment carried out by an appropriately trained assessor.

2 thoughts on “Parliamentary Questions | training of doctors, access to specialist services, social care assessments | 12 May 2014”

  1. The usual, disingenuous clap-trap from a politician.I’ve heard the same from the local CCG – “Everything’s wonderful, but the problems are nothing to do with me, Guv.”

  2. In March, despite extremely detailed and accurate accounts of biomedical research developments, and equally detailed and accurate critiques of the PACE Trial, which purports to support the current guidelines recommendation of Cognitive Behaviour Therapy and Graded Exercise Therapy as safe and effective treatments for ME/CFS but in fact fails to do so, the Guidelines Development Committee – in the face of all this evidence, provided by seven different patient advocacy groups – these damaging guidelines were put on what is called the Static List. This means that guidelines which are recognised as damaging, which give no credence to the biomedical research (they are just ‘laboratory studies’, or ‘small pilot studied’), and give credence to very flawed research by psychiatrists anxious to keep these illnesses within their remit – guideline which have not changed since 2007, now will continue to form the advice to doctors – right up to 2019. This means that access to medical advice/specialist services can be an actual danger to patients, encouraged to cooperate with these treatment regimes. As long as all the biomedical research is simply dismissed, as apparently it will continue to be (is there any other field of medicine in which ‘laboratory research’ is dismissed? (I thought most scientific/medical research was done in laboratories, what am I missing here), there is no chance that these guidelines can be changed. And as long as there is no funding made available for larger biomedical studies, they will continue to be ‘small pilot studies’. It is completely admirable that people continue to press for access to proper medical care for we ME/CFS sufferers – but if the care available is based on flawed principles, it can be a danger to us. Doctors will be taught to treat us in ways that will make us worse; likewise specialist units run on the psychiatric model. We need to have treatment based on the fact that muscular exertion makes us worse, we need to rest above all, and conserve our body’s energy for absolutely necessary activities, and have the kind of intensive help, including aids and adaptations, which could allow us to continue our normal lives as soon as possible by redesigning activities to minimise exertion. The idea of spending our precious energy getting to useless hospital appointments, going to centers which will offer us exertion as a ‘treatment’, but which will in fact increase, rather than lessen our disability – is so wrong. We want to get back to normality, and if resting and major physical help will do that, it’s what we want.
    I’ve read the small print in the NICE Guidelines – buried in the detail, on how to manage ‘setbacks/relapses’ in the context of GET, it says that after a setback, the patient should be helped, if possible, to get back to their previous level of functioning. This is an implicit acknowledgement that during the course of GET, a patient may have a ‘setback’ after which it may not be possible for them to get back to their previous (pre-treatment?) level of functioning. Quite an admission – if patients were being given a drug about which it was known that the effects could mean that the patient got sicker, permanently, how long would they be calling that drug ‘safe’ and ‘effective’?

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