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 that hospital and community services effectively prevent and manage malnutrition among people with severe and very severe myalgic encephalomyelitis in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
We published the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
The commissioning of ME/CFS services is the responsibility of local integrated care boards based on the needs of their local population. The ME/CFS Final Delivery Plan includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.
To support healthcare professionals in the diagnosis and management of conditions like ME/CFS, the National Institute for Health and Care Excellence (NICE) published guidance for ME/CFS in October 2021, a copy of which is attached.
It recommends that people with ME/CFS should be referred for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are losing weight and at risk of malnutrition. The guidance also states that clinicians should recognise that symptoms of severe and very severe ME/CFS may mean that people are unable to eat and digest food easily and may need support with hydration and nutrition, and that the support provided could include oral nutrition and enteral feeding.
NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.
Asked by: Lee Anderson (Reform UK - Ashfield)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to reduce the time taken to diagnose Parkinson's.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise the importance of a timely diagnosis of Parkinson’s disease and remain committed to delivering the National Health Service constitutional standard for 92% of patients to wait no longer than 18 weeks from Referral to Treatment by March 2029. We are investing in additional capacity to deliver appointments to help bring lists and waiting times down. Our Elective Reform Plan, published in January 2025, sets out the specific productivity and reform efforts needed to return to the constitutional standard.
By expanding community-based services for routine monitoring and follow-up, employing artificial intelligence for productivity and investing in digital tools and data, as outlined in the 10-Year Health Plan, we can ensure that consultants’ time is reserved for complex cases, including specialist diagnostic assessments, which are critical for people with suspected Parkinson’s.
Integrated care boards (ICBs) are responsible for commissioning services that meet the needs of their population, including for Parkinson’s. In doing so, the Government expects ICBs to take account of the relevant guidelines and best practice in designing their local services. The National Institute for Health and Care Excellence guideline on Parkinson’s disease (NG71) states that people with Parkinson’s should have an accessible point of contact with specialist services, which can be provided by a Parkinson’s nurse specialist, and that all individuals should be offered access to the services provided by these specialist nurses to support ongoing care and advice.
The guideline is available at the following link:
https://www.nice.org.uk/guidance/ng71
We acknowledge the significant neurology workforce challenges across the country, including the need for more specialist nurses. The forthcoming 10 Year Workforce Plan will set out how we will we train and provide the staff, technology, and infrastructure the NHS needs to make it more accessible, proactive, and tailored for all patients, including those with Parkinson’s.
Asked by: Lee Anderson (Reform UK - Ashfield)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to increase the number of specialist Parkinson’s nurses.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise the importance of a timely diagnosis of Parkinson’s disease and remain committed to delivering the National Health Service constitutional standard for 92% of patients to wait no longer than 18 weeks from Referral to Treatment by March 2029. We are investing in additional capacity to deliver appointments to help bring lists and waiting times down. Our Elective Reform Plan, published in January 2025, sets out the specific productivity and reform efforts needed to return to the constitutional standard.
By expanding community-based services for routine monitoring and follow-up, employing artificial intelligence for productivity and investing in digital tools and data, as outlined in the 10-Year Health Plan, we can ensure that consultants’ time is reserved for complex cases, including specialist diagnostic assessments, which are critical for people with suspected Parkinson’s.
Integrated care boards (ICBs) are responsible for commissioning services that meet the needs of their population, including for Parkinson’s. In doing so, the Government expects ICBs to take account of the relevant guidelines and best practice in designing their local services. The National Institute for Health and Care Excellence guideline on Parkinson’s disease (NG71) states that people with Parkinson’s should have an accessible point of contact with specialist services, which can be provided by a Parkinson’s nurse specialist, and that all individuals should be offered access to the services provided by these specialist nurses to support ongoing care and advice.
The guideline is available at the following link:
https://www.nice.org.uk/guidance/ng71
We acknowledge the significant neurology workforce challenges across the country, including the need for more specialist nurses. The forthcoming 10 Year Workforce Plan will set out how we will we train and provide the staff, technology, and infrastructure the NHS needs to make it more accessible, proactive, and tailored for all patients, including those with Parkinson’s.
Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when he plans to respond to Question 86272 from the hon. Member for Sleaford and North Hykeham.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
I refer the hon. Member to the answers I gave on:
Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when he plans to respond to Question 86271 from the hon. Member for Sleaford and North Hykeham.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
I refer the hon. Member to the answers I gave on:
Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when he plans to respond to Question 86270 from the hon. Member for Sleaford and North Hykeham.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
I refer the hon. Member to the answers I gave on:
Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when he plans to respond to Question 85848 from the hon. Member for Sleaford and North Hykeham.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
I refer the hon. Member to the answers I gave on:
Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what estimate he has made of the average annual cost of treating a person with HIV.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Human immunodeficiency virus (HIV) treatment and care remain world class in England and the success of HIV treatment is today enabling people with HIV to live long healthy lives. Effective HIV treatment also means those with an undetectable viral load cannot pass on HIV.
The cost of adult HIV care varies depending at what stage someone is diagnosed, and on their general health and other relevant health conditions. No official estimate has been made of the average cost of treating an adult for HIV for this reason.
Asked by: Helen Morgan (Liberal Democrat - North Shropshire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will work with patients and charities in the development of a successor to the UK Rare Diseases Framework.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Patient voice is an underpinning theme of the UK Rare Diseases Framework, and we are committed to ensuring that the patient voice is a key driver of the action plans published under this framework. The UK Rare Diseases Framework was published following the National Conversation on Rare Diseases, which received nearly 6,300 responses. This helped identify the four priorities of the framework in tackling rare diseases: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs.
The Government remains committed to improving the lives of those living with rare conditions, and will be publishing the next England Rare Diseases Action Plan for rare disease day in 2026, as in previous years. We recognise that despite the progress that has been made, there remains considerable unmet need for people living with rare conditions. Ministers from all four nations have agreed to extend the UK Rare Diseases Framework by one year, recognising the continued relevance of its four priorities. We will continue to engage with the rare diseases community to help shape the next steps.
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 NHS care for patients in England with severe and very severe myalgic encephalomyelitis; and what steps they are taking to improve it.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
We published the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
The commissioning of ME/CFS services is the responsibility of local integrated care boards based on the needs of their local population. The ME/CFS Final Delivery Plan includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.
To support healthcare professionals in the diagnosis and management of conditions like ME/CFS, the National Institute for Health and Care Excellence (NICE) published guidance for ME/CFS in October 2021, a copy of which is attached.
It recommends that people with ME/CFS should be referred for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are losing weight and at risk of malnutrition. The guidance also states that clinicians should recognise that symptoms of severe and very severe ME/CFS may mean that people are unable to eat and digest food easily and may need support with hydration and nutrition, and that the support provided could include oral nutrition and enteral feeding.
NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.