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.
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, if his Department will urge CEOs of relevant Trusts to provide (a) financial and (b) personnel support so that administration of givinostat can begin in weeks.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) makes recommendations for the National Health Service on whether new licensed medicines should be routinely funded by the NHS independently, based on an assessment of their costs and benefits. The NHS in England is legally required to fund medicines recommended by the NICE, normally within three months of the publication of final guidance. The NICE is currently evaluating givinostat, and its Appraisal Committee will meet to consider its recommendations in May 2025.
ITF Pharma UK, the United Kingdom marketing authorisation holder for givinostat, is providing access to givinostat through a type of compassionate use scheme called an Early Access Programme (EAP). NHS England does not have any initiatives to encourage participation in compassionate use schemes, which are the responsibility of individual pharmaceutical companies. Participation in the EAP for givinostat, which must be through one of the 23 NorthStar Centres in the UK, is decided at an individual NHS trust level, although there is general advice that trusts should engage with the relevant commissioner if they choose to participate. A NorthStar Centre will not be able to provide givinostat if its local trust has not approved participation. Under the EAP, givinostat is free to both patients taking part in it and to the NHS, but the trusts must still cover the cost of administering it to patients. Only Duchenne muscular dystrophy clinicians can make requests for givinostat for their patients. Decisions are made on a case-by-case basis for individual named patients aligned to eligibility criteria.
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, if he will take steps to ensure that the early access programme for people with Duchennes is made available across all NHS trusts.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Access to the Early Access Programme (EAP) for givinostat must be through one of the 23 NorthStar Centres in the United Kingdom. However, participation in the EAP is decided at an individual National Health Service trust level, and a North Star Centre will not be able to provide givinostat if its local trust has not approved participation. Under the EAP, givinostat is free to both patients taking part in it and to the NHS, although the NHS trusts must still cover the cost of administering it to patients. Only Duchenne muscular dystrophy clinicians can make requests for givinostat for their patients. Decisions are made on a case-by-case basis for individual named patients aligned to eligibility criteria.
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, if he will meet the hon. Member for Horsham and Dr Susan Michaelis, founder of the Lobular Moon Shot Project, to discuss his Department's work on invasive lobular breast cancer.
Answered by Andrew Gwynne
The Health Mission sets the objective of building a National Health Service fit for the future. As part of that work, and in response to the Darzi report, we have launched an extensive programme of engagement to develop a 10-Year Health Plan to reform the NHS. The plan will set out a bold agenda to deliver on the three big shifts, from hospitals to the community, from analogue to digital, and from sickness to prevention.
In addition, following publication of the 10-Year Health Plan, we will develop a new national cancer plan. The cancer plan will include more details about how to improve outcomes for all tumour types, including lobular breast cancer, and ensure that patients have access to the latest treatments and technology.
We are now in discussions about what form that plan should take, and what its relationship to the 10-Year Health Plan and the Government’s wider Health Mission should be, and will provide updates on this, including on publication dates, at the earliest opportunity. We would encourage the Hon. Member for Horsham and Dr Michalis to input to the process, which would help to shape the national cancer plan.