Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that the 2013 mandate to accurately collect and collate data on cancer recurrence is being fully implemented.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to ensuring that data on cancer is complete and of sufficiently high quality. The National Disease Registration Service (NDRS) collects recurrence data for non-primary cancers via data submissions as part of the Cancer Outcomes and Services Dataset (COSD). The COSD has been the national standard for reporting cancer in the National Health Service in England since January 2013, and provides a helpdesk and data liaison service to support data completeness.
Asked by: John Milne (Liberal Democrat - Horsham)
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 is taking to ensure that people diagnosed with invasive lobular breast cancer are routinely offered MRI scans for follow-up monitoring.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Health Service is committed to ensuring that all cancer patients in England, including those with lobular breast cancer, have access to personalised care, including a needs assessment, a care plan, and health and wellbeing information and support.
Treatment for cancer is highly individualised and decisions about cancer treatment, including ongoing monitoring and follow up care, are typically made by clinicians and multidisciplinary teams of healthcare professionals. These decisions are based on medical assessments and what's best for the individual's overall health and well-being.
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps NHS England is taking to ensure that NHS Trusts are able to deliver emerging treatments for Duchenne muscular dystrophy when they are needed by patients.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The Department understands the impact that Duchenne muscular dystrophy has on those living with it and their families, and the urgent need for new treatment options. If new therapies for Duchenne muscular dystrophy are approved by the National Institute for Health and Care Excellence (NICE), then appropriate commissioning plans will be put in place to enable equitable access to treatment through Specialised Neurology Services.
The delivery of timely and equitable access to new treatments for Duchenne muscular dystrophy under company-sponsored early access schemes is not the responsibility of NHS England. Individual pharmaceutical companies may put in place Early Access Programmes (EAPs) to allow early access to new medicines that do not yet have a marketing authorisation. Participation in EAPs is decided at an individual National Health Service trust level, and under these programmes, the cost of the drug is free to both patients taking part in it, and to the National Health Service, although NHS trusts must still cover administration costs and provide clinical resources to deliver the EAP.
There are no common clinical, data, or regulatory standards for company-sponsored EAPs, meaning each one demands a new protocol to be devised and delivered by each participating trust, which can create significant pressures on clinical and financial resources. Companies providing a sponsored EAP also reserve the right to limit or to close registration of new patients at any time, meaning that any financial and clinical investment made by trusts to establish an EAP could be undermined by a commercial decision that would most likely happen in the event of the treatment not being recommended following an appraisal by NICE.
NHS England has published guidance for integrated care systems (ICS) on free of charge (FoC) medicine schemes, including EAPs, providing advice on potential financial, resourcing, and clinical risks.
ICSs should use the guidance to help determine whether to implement any FoC scheme, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what discussions he has had with steps NICE on ensuring greater (a) clarity and (b) transparency in relation to how carer quality of life is considered within its medicines appraisal framework.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence’s (NICE) technology appraisal process allows its independent committees to take all health-related costs and benefits, including health-related quality-of-life for carers, and impacts on personal social services, into account. The NICE’s methods are set out in its published health technology evaluations manual, which is available at the following link:
https://www.nice.org.uk/process/pmg36
Evaluations should consider all health effects for patients, and, when relevant, carers. When presenting health effects for carers, evidence should show when a condition is associated with a substantial effect on a carer’s health-related quality of life, and how the technology affects carers. This applies for all therapies, including therapies for rare diseases. NICE appraisals specifically consider health-related quality of life, for both patients and carers, rather than quality of life as a whole.
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what discussions he has had with NICE on ensuring that the Single Technology Appraisal process takes into account the health-related quality-of-life impacts on carers for (a) all and (b) rare disease therapies.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence’s (NICE) technology appraisal process allows its independent committees to take all health-related costs and benefits, including health-related quality-of-life for carers, and impacts on personal social services, into account. The NICE’s methods are set out in its published health technology evaluations manual, which is available at the following link:
https://www.nice.org.uk/process/pmg36
Evaluations should consider all health effects for patients, and, when relevant, carers. When presenting health effects for carers, evidence should show when a condition is associated with a substantial effect on a carer’s health-related quality of life, and how the technology affects carers. This applies for all therapies, including therapies for rare diseases. NICE appraisals specifically consider health-related quality of life, for both patients and carers, rather than quality of life as a whole.
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase early diagnosis of invasive lobular carcinoma.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to getting the National Health Service diagnosing cancer earlier and treating it faster so that more patients, including those with lobular carcinoma, survive this horrible set of diseases. To achieve this, the NHS has delivered an extra 40,000 operations, scans, and appointments each week as the first step to ensuring early diagnosis and faster treatment.
There are multiple NHS initiatives and funding streams across the NHS in England that support the early detection of breast cancer, and many organisations across the health service are involved.
The Department spends £1.6 billion each year on research through its research delivery arm, the National Institute for Health and Care Research (NIHR), with cancer as the largest area of spend at more than £133 million in 2023/24. The NIHR spends more on cancer than any other disease group, reflecting its high priority. These investments in cancer, including lobular breast cancer, are pivotal to informing efforts to improve cancer prevention, treatment, and outcomes.
The forthcoming National Cancer Plan will include further details on improving outcomes for cancer patients, including those with invasive lobular carcinoma, and will highlight how the Department will support the NHS to improve diagnosis rates for people in all parts of England.
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to issue new guidance on the provision of advanced community eye care services in (a) Horsham and (b) England.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Integrated care boards are responsible for commissioning primary and secondary eye care services in their areas to meet patient needs, and this includes services to meet the needs of patients with glaucoma.
The Department worked with the eye care sector to develop a standard clinical specification for the commissioning of Community Minor and Urgent Eye Care Services, and this was published in February 2024. The specification is available at the following link:
https://locsu.co.uk/wp-content/uploads/2024/02/1.-CUES-Service-specification-vs-1.43-Feb-2024.pdf
Asked by: John Milne (Liberal Democrat - Horsham)
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 ensure that glaucoma monitoring services are available to patients in (a) Horsham and (b) England.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Integrated care boards are responsible for commissioning primary and secondary eye care services in their areas to meet patient needs, and this includes services to meet the needs of patients with glaucoma.
The Department worked with the eye care sector to develop a standard clinical specification for the commissioning of Community Minor and Urgent Eye Care Services, and this was published in February 2024. The specification is available at the following link:
https://locsu.co.uk/wp-content/uploads/2024/02/1.-CUES-Service-specification-vs-1.43-Feb-2024.pdf
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether (a) he and (b) the Minister for Public Health and Prevention will attend the Lobular Moon Shot Project's drop in on Tuesday 6 May 2025 to discuss research into lobular breast cancer.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Due to diary pressures, neither myself nor my Rt Hon. Friend, the Secretary of State for Health and Social Care will be attending the Lobular Moon Shot Project’s drop in event on 6 May 2025. However, the Department will continue to fund research into lobular breast cancer through the National Institute for Health and Care Research (NIHR).
The NIHR welcomes funding applications for research into any aspect of human health and care, including lobular breast cancer. 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. Welcoming applications on lobular breast cancers to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
Asked by: John Milne (Liberal Democrat - Horsham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of offering the RSV vaccination to people over the age of 65.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The policy for the respiratory syncytial virus (RSV) programme is based on the advice of the Joint Committee on Vaccination and Immunisation (JCVI), an independent expert advisory committee. That advice is provided to the Government to inform, develop, and make policy.
In 2023, RSV programmes for those aged over 65 years old and those aged over 75 years old were assessed by the JCVI for their potential impact and cost effectiveness. There was more certainty in the data available at the time to support a programme for those aged over 75 years old. Therefore, the JCVI advised a programme for older adults aged 75 years old and above. However, the JCVI did note that as more data accumulated, the impact and cost effectiveness for those aged over 65 years old could be kept under review.
The committee keeps all vaccine programmes under review and will continue to update its advice as new evidence emerges.