Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of hospital compliance with National Institute for Health and Care Excellence guidelines for the treatment of inpatients with severe myalgic encephalomyelitis.

Answered by Lord Markham

The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.

The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.

No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

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. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.

Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are taking to ensure accurate coding of a diagnosis of myalgic encephalomyelitis on both primary and secondary care records.

Answered by Lord Markham

The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.

The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.

No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

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. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.

Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are taking to develop a pathway of care for people with severe myalgic encephalomyelitis who require hospitalisation.

Answered by Lord Markham

The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.

The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.

No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

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. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.

Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), whether the cross-Government delivery plan for myalgic encephalomyelitis (ME)/chronic fatigue syndrome will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These 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.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), what plans are in plans to publish the cross-Government delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These 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.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These 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.

Question to the Department for Transport:

To ask His Majesty's Government what steps they are taking to increase the supply of high-voltage engineers in the rail industry.

Answered by Lord Hendy of Richmond Hill - Minister of State (Department for Transport)

The Department works closely with the National Skills Academy for Rail to attract more talent into the rail industry. As part of this, the website “Routes into Rail” highlights career opportunities within the sector. The Department intends to develop a longer-term strategy for the rail workforce exploring productivity, efficiencies, skills, and diversity.

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