The Countess of Mar has been asking a stream on questions about ME/CFS which were answered in Parliament on June 6 – in addition to the question about the future of the Romford service that we reported yesterday.
Three questions were aimed at the Health Department’s spokesman in the House of Lords:
To ask Her Majesty’s Government what plans they have to address the disruption to specialist services for chronic fatigue syndrome/myalgic encephalomyelitis patients resulting from changes to the distribution of funding from primary care trusts’ baseline budgets to the bundle.
To ask Her Majesty’s Government whether they will designate chronic fatigue syndrome/myalgic encephalomyelitis as a reportable health condition in order to obtain robust collection of data on (a) the number of children, young people and adults with the condition, (b) the degrees of severity of the condition, (c) demographic data, and (d) hereditability.
To ask Her Majesty’s Government whether they will commission research into the advice given to patients suffering significant viral or bacterial infections in order to prevent the incidence of chronic fatigue syndrome/myalgic encephalomyelitis.
In a written answer covering all three questions on 6 June 2011, Parliamentary Under Secretary of State for Health Earl Howe replied:
Specialist services for those with chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) are funded from primary care trust budgets. There are no plans to fund these services from the National Health Service bundle.
The department’s position remains that the administrative burden on clinicians and others of the notification system means that it should be used only for a relatively small number of infectious diseases where monitoring is clinically necessary to identify sources of infection and control the spread, rather than be imposed as a means of collecting statistical information on the incidence and prevalence of specific conditions.
The Government have no plans to commission such research. The cause of CFS/ME is unknown, and it is therefore unknown what factors are responsible for the incidence of this medical condition.
The Medical Research Council has recently confirmed a commitment of up to £1.5 million to support research into the causes of CFS/ME. The new funding call will focus on six priority areas which have been identified by leading experts in the research community.
And the Countess had her sights on the Department for Work and Pensions when she asked this further question:
To ask Her Majesty’s Government whether they intend to put in place safeguards to protect people with chronic fatigue syndrome/myalgic encephalomyelitis who are unable to work from being pressurised into unsuitable work or work-related activity prematurely when such a return to activity could be detrimental to their health.
In a written answer on June 2011, Parliamentary Under Secretary of State for Welfare Reform Lord Freud replied:
We recognise chronic fatigue syndrome/myalgic encephalomyelitis can be severely disabling. Where a disability or health condition makes it unreasonable for a person to work we commit to support them. The right benefit in such cases is employment and support allowance (ESA). Those with the most severe functional limitations will be placed in the support group, with no conditionality/work related activity requirements.
People with limited capability for work will be placed in the work-related activity group. These individuals may be required to undertake work-related activity, which an adviser will discuss with them and will be detailed in their action plan. Work-related activity WRA) may include work focused interviews (WFI) and other activities-for example, undertaking a training course or preparing a CV. Any activity the claimant is required to undertake must be reasonable in their circumstances. Advisers have the discretion to not impose work-related activity as they see fit. The purpose of work-related activity is to be of help to a claimant. Through these flexibilities we empowered advisers to support a wide variety of people, many of whom may have fluctuating conditions. At no time can an ESA customer be directed to seek, apply for or do work, nor to undertake medical treatment.
Safeguards are important for all ESA claimants rather than being condition specific. ESA customers have the right to ask for an activity to be reconsidered if they feel it is unreasonable. The reconsideration is undertaken by a Jobcentre Plus decision-maker. Customers also have the right of appeal, which is dealt with by an appeals tribunal.