Written Evidence May. 15 2024
Committee: Petitions CommitteeFound: The LTN has added to my journey times and costs and also my fatigue levels are increased due to the
Asked by: Navendu Mishra (Labour - Stockport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to help improve specialist services for patients diagnosed with myalgic encephalomyelitis.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (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’s (NICE) guidance on ME and CFS diagnosis and management, published in October 2021.
In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME and CFS. 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.
Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the interim plan meets the needs of the ME and CFS 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, and will publish a summary of the consultation responses in due course. Those consultation responses, along with continued close engagement with key stakeholders, will drive the development of the final cross-Government ME/CFS Delivery Plan, which will be published later this year.
Asked by: Owen Thompson (Scottish National Party - Midlothian)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure myalgic encephalomyelitis receives a proportionate share of National Institute for Health and Care Research funding.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health including myalgic encephalomyelitis. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.
Asked by: Owen Thompson (Scottish National Party - Midlothian)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will instruct the National Institute for Health and Care Research to increase the level of funding available for myalgic encephalomyelitis research.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health including myalgic encephalomyelitis. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.
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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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 - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Written Evidence May. 03 2024
Inquiry: Preterm BirthFound: research, my understanding is that many experience neuro developmental conditions, pain, and severe fatigue
Mentions:
1: Sajid Javid (Con - Bromsgrove) living with the condition, the distressing and familiar pattern can be all too clear: initial signs of fatigue - Speech Link
2: Fleur Anderson (Lab - Putney) fatigue syndrome, including diagnosis across the country; thirdly, funding research into severe ME and - Speech Link
3: Andrew Gwynne (Lab - Denton and Reddish) continues to suffer from the effects of long covid, those symptoms are all too familiar to me: a draining fatigue - Speech Link
4: Andrew Stephenson (Con - Pendle) fatigue syndrome, is a complex medical condition with a wide array of symptoms. - Speech Link
Asked by: Macpherson, Ben (Scottish National Party - Edinburgh Northern and Leith)
Question
To ask the Scottish Government how it plans to address the barriers to the implementation of the NICE guidelines on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) identified in the recent survey of NHS boards in Scotland, and how it is fostering consensus amongst the people involved in implementing the NICE guidelines.
Answered by Minto, Jenni - Minister for Public Health and Women's Health
The Scottish Government fully supports the National Institute for Health and Care Excellence (NICE) guideline on diagnosing and managing ME/CFS. We wrote to all Scottish health boards following its publication to raise awareness of the guidance and encourage its implementation.
We are committed to improving care for people with ME/CFS and want to facilitate constructive communication between patients and clinicians so that all parties are engaged in finding a way forward.
We are currently reviewing options to foster consensus around the applicability and implementation of the NICE guideline on ME/CFS, and how this relates to other existing clinical guidance in Scotland. Input from people with lived experience of ME/CFS will be integral to any agreed option.