Asked by: Alex Sobel (Labour (Co-op) - Leeds Central and Headingley)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, what steps her Department is taking to ensure that staff conducting benefit assessments with people suffering from ME and long covid patients are aware of the harmful impact of inappropriate exercise, over-exertion and exposure to light, sound, touch and new environments on those people.
Answered by Chloe Smith
We have interpreted your question to mean what steps her department is taking to ensure that staff conducting health and disability benefit assessments with people suffering from Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) and Long Covid patients are aware of the harmful impact of inappropriate exercise, over-exertion and exposure to light, sound, touch and new environments on those people.
All Health Professionals (HPs) carrying out health and disability assessments are clinically qualified practitioners. They are subject to a rigorous recruitment process followed by a comprehensive training programme in disability assessment.
CFS / ME and Long Covid are medically recognised conditions associated with a range of disabling effects which depend upon the severity of the condition. HPs who undertake assessments on behalf of the department are trained to assess the disabling effects of these conditions, and have access to learning material on both Long Covid and CFS / ME. They do not advise on treatment or management of conditions.
Personal Independence Payment (PIP) assessment provider, Capita, developed a Condition Insight Report on Long Covid, which was released to HPs on 17 May 2021, and is utilising Long Covid in scenarios embedded into various training programmes and modules as they are being updated.
PIP assessment provider, Independent Assessment Services (IAS), has a training module on coronaviruses and has also sent out a shortened clinical bulletin to their HPs in March 21.
All Centre for Health and Disability Assessments (CHDA) Healthcare Professionals (HCPs), who carry out the Work Capability Assessment (WCA) and assessments for Industrial Injuries Disablement Benefit (IIDB), were issued with a distance learning module on Long Covid in June 2021.
Asked by: Rachael Maskell (Labour (Co-op) - York Central)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what training is provided (a) in medical schools, (b) for GPs and (c) for hospital doctors on (a) ME and (b) similar conditions.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
Each individual medical school in the England sets its own undergraduate curriculum which must meet the standards set by the General Medical Council (GMC), as the regulator of the medical profession. The GMC would expect that, in fulfilling these standards, newly qualified doctors are able to identify and treat or manage any care needs a person has, including relating to chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and other similar conditions.
CFS/ME and similar conditions are also specifically included in postgraduate medical curricula for general practice and for other specialties where it is most likely to be encountered, such as paediatrics, tropical medicine and allergy and immunology. The training curricula for postgraduate trainee doctors is set by the relevant Royal College and must also meet the standards set by the GMC.
Asked by: Paul Blomfield (Labour - Sheffield Central)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, what recent assessment she has made of the adequacy of personal independence payment evaluation criteria for evaluating (a) chronic fatigue syndrome, (b) fibromyalgia and (c) other chronic illnesses.
Answered by Justin Tomlinson
All health professionals carrying out assessments are clinically qualified and registered practitioners in their own field. DWP requires health professionals to have a broad training in disability analysis as well as awareness training in specific conditions, which includes chronic fatigue syndrome, fibromyalgia and other chronic illness.
The PIP consultation is not a medical assessment requiring the health professional to diagnose a condition or its severity and recommend treatment options. Instead it requires the assessor to look at the impact of conditions and impairments on an individual’s daily life. This helps ensure that assessment reports are fit for purpose, clinically justified and sound, and provide sufficient information for the department to make a reasonable decision on entitlement to benefit.
Asked by: Anne Main (Conservative - St Albans)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, what steps her Department is taking to tailor medical assessments for benefits to take account of the needs of ME sufferers.
Answered by Justin Tomlinson
Both the assessment for Personal Independence Payment (PIP) and the Work Capability Assessment (WCA) are functional assessments designed to respectively contribute towards the extra costs that arise as a result of a long-term health condition or disability, and to assess an individual’s capability to work. Both benefits are based on the impact of a person’s disability or health condition, not on the condition itself. This is important, as we recognise that the same condition can affect different people in different ways.
Assessors are provided with training and guidance in the full range of health conditions, including ME. For instance, all WCA assessors have access to a learning module on chronic fatigue syndrome (CFS)/ME, that is externally quality assured by an expert clinician. Furthermore, the PIP providers have recently been involved in a programme of engagement with CFS/ME stakeholders, and have developed a comprehensive suite of training products on CFS/ME.
Asked by: Countess of Mar (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what processes are in place to safeguard children with chronic fatigue syndrome and other disorders whose parents have enrolled them on Lightning Process courses; and what evaluation has been undertaken of the (1) benefits, and (2) harms, to those children who have participated in such courses.
Answered by Baroness Blackwood of North Oxford
The Lightning Process (LP) is not offered as a part of the chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) standard treatments on the National Health Service. Subject to the nature of the safeguarding concerns, issues should be directed to the relevant professional regulator, should the practitioner be a member of a registered profession; the local authority (trading standards office or children’s service), if false claims are being made about the effectiveness of the treatment or welfare of a child is a concern; or the police, if a crime is involved.
The LP involves a course of three half-days of training aiming to teach participants how to use their brain to improve their body's health.
A randomised controlled trial with 100 adolescents aged 12-18 was undertaken by researchers in Bristol. Participants were randomised into two groups: those who received standard CFS/ME treatment and those who received the standard treatment plus the LP.
Researchers found those who received the LP had better physical function, were less tired and less anxious after six months. At 12 months, they had further improvement in physical function, and improved depression scores and school attendance. This research trial had several limitations as set out in the peer reviewed journal article. This was a very small trial and so it would need to be repeated in a much larger group to demonstrate more generalisable findings. Participants were not blinded so their self-reported outcomes might have been biased, for example participants may have been more likely to report positive outcomes because they knew they were getting additional therapy in the LP group. Of all those eligible to participate in the trial, fewer than 30% agreed to take part. Participants in the trial did not have any serious adverse events attributable to either LP or usual care. LP therapy was given in addition to the usual CFS/ME care as a no-treatment control group was not deemed ethical, therefore it cannot be suggested as a replacement for current specialised medical care.
Independent ethical review ensures that participant safety is at the centre of all research. In the United Kingdom, review by an ethics committee is one of a series of safeguards intended to protect the people taking part in the research. The operating procedure for trials in the UK has inbuilt safeguards designed to protect patients from harm in the event an intervention is ineffective or potentially harmful. Participants are free to withdraw from a study at any time.
Asked by: Baroness Morgan of Cotes (Non-affiliated - Life peer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent discussions he has had with medical training bodies on ensuring that training programs for doctors, nurses and other health professionals include the most up to date guidance on diagnosis and appropriate treatment of myalgic encephalomyelitis.
Answered by Stephen Hammond
There have been no recent discussions between Departmental Ministers and training bodies for doctors, nurses or other health professionals about myalgic encephalomyelitis.
National Health Service employers are responsible for ensuring staff they employ are trained to the required standards to deliver appropriate treatment for patients.
Asked by: Lord Bellingham (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent discussions he has had with representatives of medical training bodies on ensuring that training programs for doctors, nurses and other health professionals include the most up to date guidance on diagnosis and appropriate treatment of myalgic encephalomyelitis.
Answered by Steve Brine
Ministers at the Department regularly meet with medical training bodies including the General Medical Council, to discuss many issues. However, there have been no recent discussions with medical training bodies to discuss the guidance on myalgic encephalomyelitis (ME).
In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with chronic fatigue syndrome (CFS)/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide.
The AKT is a summative assessment of the knowledge base that underpins general practice in the UK within the context of the NHS and is a key part of general practitioners’ qualifying exams.
On 20 September 2017, the National Institute for Health and Care Excellence announced its decision to undertake a full update of the guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this decision can be found at the following link:
Asked by: Lord Field of Birkenhead (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment.
Answered by Steve Brine
The Government is investing over £1.7 billion a year in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). Since 2011, the MRC has funded seven research projects totalling £2.62 million, following a call for proposals to help increase the understanding of the mechanisms of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). CFS/ME research remains an area of high strategic importance for the MRC. Applications are encouraged in response to MRC’s Science Boards and Panels under a Cross-Board highlight notice, in place since 2003 and updated in 2011.
On 20 September 2017, the National Institute for Health and Care Excellence (NICE) announced its decision to undertake a full update of the guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this decision can be found at the following link:
In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the United Kingdom within the context of the NHS and is a key part of GPs’ qualifying exams.
Finally, regarding concerns about the wellbeing of children; we recognise that chronic medical conditions, such as ME, can put a strain on the child and their family. Whilst the Department for Education would want to avoid action that would add to the strain, it is right that children’s services should be prepared to assess the needs of children who may be at risk. It is important that the assessment of a child is conducted on a multi-agency basis, and takes account of any medical condition the child may have.
In July 2018, the Department for Education published an updated version of its statutory safeguarding guidance, ‘Working Together to Safeguard Children’. This includes guidance on how assessments should be conducted, and sets out new local multi-agency procedures. Health services are one of the core local safeguarding partners.
Asked by: Laurence Robertson (Conservative - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of funding for research into the causes of ME; and if he will make a statement.
Answered by Caroline Dinenage
The Department’s National Institute for Health Research (NIHR) recognises that myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating condition.
Since 2011, the NIHR has provided £3.37 million of programmes funding for projects and training on CFS/ME. Several of the NIHR’s Biomedical Research Centres also carry out research into CFS/ME, with project funding provided by the Medical Research Council and CFS/ME charities.
The NIHR welcomes funding applications for research into any aspect of human health, including ME; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
Asked by: Kate Osamor (Labour (Co-op) - Edmonton and Winchmore Hill)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to raise awareness of myalgic encephalomyelitis among the public and medical practitioners.
Answered by Steve Brine
There is information on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for both healthcare professionals and the general public via the NHS Choices website. Further information is also provided in the National Institute for Health and Care Excellence (NICE) clinical guideline on CFS/ME, which is provided in formats suitable for both professionals and the public. Both the NHS Choices and NICE guidance can be found at the following links:
www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Education and training is also an important feature in building the awareness of clinical professionals. In terms of education and training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP), set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the United Kingdom within the context of the National Health Service and is a key part of GPs’ qualifying exams. In addition, the RCGP offers a free online e-learning course for clinicians which covers the diagnosis treatment and care of patients with CFS/ME.
Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.