Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the extent to which the 2021 NICE guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been implemented (1) in general, and (2) in relation to the training health and social care professionals on how to employ the new recommendations, (a) establishing a UK-wide network of hospital-based ME/CFS specialist services, (b) making all NHS services accessible and capable of providing personalised ongoing care and support to those with ME/CFS, and (c) ensuring social care provision for ME/CFS is monitored and regularly reviewed.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
No formal assessment has been made of the extent to which the 2021 National Institute for Health and Care Excellence (NICE) guidance for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), has been implemented.
NHS England does not centrally commission services for ME. Services to support people living with ME are commissioned by integrated care boards (ICBs) to meet the needs of their local population, and are not reviewed or assessed by NHS England centrally. In October 2023, the British Association of Clinicians in ME published their ME/CFS National Services Survey 2023. This survey provides insight on the services being delivered for adults, and children and young people, living with ME. A copy of the survey is attached.
In relation to the training of health and social care professionals, it is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from the ME Research Collaborative (MERC) Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME.
The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision. More information about the interim plan is available on the GOV.UK website, in an online only format.
Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the plan meets the needs of the ME community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation on the interim delivery plan on ME, and will publish a final delivery plan later this year.
In relation to the monitoring of social care provision for individuals with ME, the Department has made a landmark shift in how we hold local authorities to account for their adult social care duties, through a new Care Quality Commission (CQC) assessment. The CQC will examine how well local authorities deliver their Care Act duties, increasing transparency and accountability and, most importantly, driving improved outcomes for people, including those with ME, who draw on care and support. The CQC completed five pilot assessments and is now rolling out assessment to all local authorities.
Asked by: Alexander Stafford (Conservative - Rother Valley)
Question to the Department for Education:
To ask the Secretary of State for Education, what support the Government provides to children in full-time education who have myalgic encephalomyelitis or chronic fatigue syndrome.
Answered by Claire Coutinho - Secretary of State for Energy Security and Net Zero
The department is committed supporting pupils with medical conditions so that they have full access to education. In 2014, the department introduced a new duty on schools to support pupils with all medical conditions, including myalgic encephalomyelitis or chronic fatigue syndrome. Statutory guidance for schools on how to support pupils with medical conditions has been published and is available at: https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3.
The guidance does not specify which medical conditions should be supported in schools. It focuses on how to meet the needs of each individual child and how their medical condition impacts on school life.
The statutory guidance states that governing boards should ensure any member of school staff providing support to a pupil with medical needs has received suitable training. This is to ensure that staff are competent and have confidence in their ability to support pupils with medical conditions, and to fulfil the requirements as set out in individual healthcare plans (IHPs).
Schools also have duties under the Equality Act 2010 to make reasonable adjustments and not to discriminate against disabled children, including those with certain long-term health conditions, in relation to their access to education and associated services. Schools must make reasonable adjustments to their practices, procedures, and policies to ensure that they are not putting those with certain long-term health problems at a substantial disadvantage.
Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, whether she has plans to revise the assessment process for Personal Independence Payment to make it more accessible for those who live with ME or CFS by ensuring assessors are specially trained to understand the condition.
Answered by Victoria Prentis - Attorney General
Assessment providers are required to ensure that all health professionals (HPs) carrying out Personal Independence Payment (PIP) assessments have training and knowledge of the clinical aspects and overall functional effects of a wide range of health conditions and impairments. The department does not believe that it is necessary for the provider to deploy HPs who are specialists in the specific conditions or impairments of the individuals they are assessing. Instead, the focus is on ensuring that HPs are experts in disability analysis, emphasising on the effects of health conditions and impairments on the claimant's daily life.
HPs can access a wide range of clinical resources to research any conditions presented. This includes evidence-based protocols, e-learning modules or case studies, as well as keeping knowledge up to date through Continuous Professional Development (CPD). Both PIP providers have a condition insight report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), and CPD modules for their HPs on the condition.
Claimants with ME/CFS are able to access PIP in the same way as other people with long-term health conditions or disabilities. DWP is committed to improving our services and works continuously with providers to improve the assessment process. The Shaping Future Support: The Health and Disability Green Paper, explored how the welfare system can better meet the needs of claimants now and in the future, by improving claimant experience of our services, enabling independent living, and improving employment outcomes. We are considering all the responses to the Green Paper proposals and are considering what future policy changes might look like. These will be set out in the White Paper later this year.
Asked by: Damien Moore (Conservative - Southport)
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 increase (a) public awareness of and (b) support for people suffering from chronic fatigue syndrome, CFS/ME.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The National Institute for Health and Care Excellence (NICE) is an arm's length body of the Department with responsibility for developing evidence-based guidance for the health and care system including for chronic fatigue syndrome (CFS/ME).
To increase awareness, support and understanding of CFS/ME, NICE recently updated their CFS/ME guidance. The guidance includes specific recommendations on providing information and support to people with CFS/ME including personalised advice about managing symptoms.
Additionally, the guidance recommends that training for all staff delivering care to people with CFS/ME should include materials helping them to understand what CFS/ME is, how it is diagnosed and managed.
NICE is working with system partners to support the implementation of the guideline.
Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has plans tackle the misdiagnosis of ME patients; and with whom NICE plans to work to raise awareness of that misdiagnosis among the public, Government officials and NHS staff.
Answered by Gillian Keegan - Secretary of State for Education
The National Institute for Health and Care Excellence (NICE) is the independent body with responsibility for developing evidence-based guidance for the health and care system. NICE recently updated their guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), aiming to improve awareness and understanding of ME/CFS to ensure earlier and correct diagnoses. The guideline includes specific recommendations on providing information and support to people with ME/CFS and training for health and social care professionals. This training should include material on ME/CFS and its diagnosis and management.
NICE promotes guidance via its website, newsletters and other media. While guidelines are not mandatory, we expect the healthcare system to take them fully into account in designing services that meet the needs of their local population and to work towards their implementation over time. NICE is working with system partners to support the implementation of the guideline for ME/CFS.
Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
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 - Minister of State (Department of Health and Social Care)
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.