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.
Written Evidence May. 08 2024
Inquiry: Disability employmentFound: Therefore, our submission is likely to have wider relevance, and this includes people with Myalgic
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.
Asked by: Webber, Sue (Scottish Conservative and Unionist Party - Lothian)
Question
To ask the Scottish Government, further to the answers to questions S6W-23717 and S6W-23718 by Jenni Minto on 19 December 2023, whether it is aware of any specialist services for children and young people with myalgic encephalomyelitis (ME) in Scotland, and, if it is the case that it is not aware of any such services, what plans it has to address this.
Answered by Minto, Jenni - Minister for Public Health and Women's Health
We recognise the importance of good quality care for children and young people living with ME/CFS.
Children and young people with ME/CFS can experience a wide spectrum of symptoms and may require input from clinicians from a variety of specialisms. We know there is no ‘one-size fits all’ response and a focus is required on coordinating existing care. Whilst children and Young People are not included within the scope of the current Neurological Care & Support Framework strategy, those who need assessment by a consultant or other professional can access this after an appropriate referral, normally from a GP, and can be referred to any further services as required such as paediatric medical specialities, paediatric physiotherapy and occupational therapy.
The provision of healthcare services is the responsibility of local NHS Health Boards, taking into account national guidance, local service needs and priorities for investment. Whilst our 2023 survey of health boards’ arrangements for ME/CFS care did not identify any ME-specific specialist services for children and young people, Boards are expected to ensure that patients have access to a range of professionals to provide the appropriate management of their condition.
Mentions:
1: Sajid Javid (Con - Bromsgrove) to colleagues from across the House for their attendance.There is no single universal experience of myalgic - Speech Link
2: Sajid Javid (Con - Bromsgrove) parliamentary group on myalgic encephalomyelitis, Forward ME and the World ME Alliance as well as the - Speech Link
3: Fleur Anderson (Lab - Putney) in my constituency came up to me to tell me about the hugely life-limiting impact that ME has had on - Speech Link
4: Carol Monaghan (SNP - Glasgow North West) I will start by declaring an interest as the chair of the all-party parliamentary group on myalgic encephalomyelitis - 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.
Mentions:
1: Chris Bryant (Lab - Rhondda) If the Minister does not know the answer today, will he write to me? - Speech Link
2: Kerry McCarthy (Lab - Bristol East) support and more engagement with bureaucracy, particularly for people with fluctuating conditions such as myalgic - Speech Link
3: Mel Stride (Con - Central Devon) To me, that is unacceptable. - Speech Link
4: Alistair Strathern (Lab - Mid Bedfordshire) Back in 2018, a bad concussion left me out of work for several months. - Speech Link
Asked by: Seema Malhotra (Labour (Co-op) - Feltham and Heston)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to section 1.17 of the National Institute for Health and Care Excellence (NICE) guidelines entitled Myalgic encephalomyelitis (or encephalopathy) chronic fatigue syndrome: diagnosis and management, published on 29 October 2021, what steps her Department is taking to help ensure that hospital staff are aware of NICE guidelines for caring patients with very severe myalgic encephalomyelitis.
Answered by Andrew Stephenson - Minister of State (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 myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The guidance states that where possible, patients with ME should be provided with a single room, and that factors such as the level of lighting and sound should be taken into consideration, and necessary adjustments made.
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 in providing better care and improving patient outcomes. 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.
We have finished consulting on My Full Reality, the cross-Government interim delivery plan on ME, which seeks to improve the experiences and outcomes of people living with this condition. We are in the process of analysing the results of the consultation. The views and experiences gathered through this consultation will be used to build a picture of how well the interim delivery plan identifies and meets the needs of the ME community, and to highlight any significant gaps where further action may be necessary. We will publish a summary of the consultation responses, which will inform the final delivery plan being published later this year, in due course.