Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
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 - Shadow Minister (Science, Innovation and Technology)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
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 - Shadow Minister (Science, Innovation and Technology)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
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 - Shadow Minister (Science, Innovation and Technology)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the adequacy of myalgic encephalomyelitis/chronic fatigue syndrome services commissioned by (1) Norfolk and Waveney, and (2) Suffolk and North East Essex, Integrated Care Board.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) services that meet the needs of their population subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance such as the National Institute for Health and Care Excellence guidance on ME/CFS diagnosis and management, published in October 2021. A copy of the guidance is attached.
The Government has been consulting on ‘My Full Reality’, the cross-Government interim delivery plan on ME/CFS, which seeks to improve the experiences and outcomes of people living with this condition. The plan contains a series of actions to improve access to specialist ME/CFS services. The final plan will be published in due course.
The Government has made no assessment of the ME/CFS services commissioned by Norfolk and Waveney, and Suffolk and North East Essex ICBs.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to (1) ensure people with myalgic encephalomyelitis (ME) have access to specialist ME/chronic fatigue syndrome services, and (2) increase funding available for such services.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) services that meet the needs of their population subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance such as the National Institute for Health and Care Excellence guidance on ME/CFS diagnosis and management, published in October 2021. A copy of the guidance is attached.
The Government has been consulting on ‘My Full Reality’, the cross-Government interim delivery plan on ME/CFS, which seeks to improve the experiences and outcomes of people living with this condition. The plan contains a series of actions to improve access to specialist ME/CFS services. The final plan will be published in due course.
The Government has made no assessment of the ME/CFS services commissioned by Norfolk and Waveney, and Suffolk and North East Essex ICBs.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what plans they have to provide a COVID-19 booster programme for the general population in light of new Omicron variants.
Answered by Lord Kamall - Shadow Minister (Health and Social Care)
On 21 February 2022, the Government accepted advice from the Joint Committee on Vaccination and Immunisation (JCVI) to offer an additional booster dose in spring 2022 to those most vulnerable as a precautionary measure. An additional dose has been offered to all residents in care homes for older adults, individuals aged 12 years old and over who are immunosuppressed and all adults aged 75 years old and over.
On 19 May 2022, the JCVI provided interim advice on an autumn COVID-19 booster programme, which stated that an additional dose should be provided to residents in a care home for older adults and staff; frontline health and social care workers; all those aged 65 years old and over; and adults aged 16 to 64 years old in a clinical risk group. The JCVI continues to review the vaccination of other patient groups and details on the definitions of clinical risk groups. The JCVI will issue further advice if necessary.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government whether they expect general practitioners to use their clinical judgement in including patients with existing diseases in Group 6 for COVID-19 vaccinations if they consider them to be at risk of exacerbation of their underlying disease should they become infected with COVID-19.
Answered by Lord Bethell
Clinicians, including general practitioners (GPs) are able to use their clinical judgement to categorise patients as clinically extremely vulnerable (CEV) because they consider them to be at very high risk of serious illness from COVID-19. Those categorised as CEV are in priority group four of phase one of the vaccination programme. Those who are not categorised as CEV but have underlying conditions that the Joint Committee on Vaccination and Immunisation (JCVI) advises have increased clinical risk from COVID-19 are in priority group six. Within the broad set of clinical conditions within priority group six, GPs and other clinicians are able to add individuals to this group. They are able to use clinical judgement to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from the virus itself.