Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, who the members are of the NHS England high cost devices steering group; and what the role of that group is.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The steering group will be chaired by the High-Cost Devices Senior Responsible Owner within the NHS England Pricing and Costing team. To maintain the high-cost devices exclusions list, the Pricing and Costing team obtain advice and recommendations from experts working in the relevant fields. The members of this steering group will work in healthcare or pharmaceutical capacities, independent of any private enterprise or commerce, and will be from the Department, National Health Service commissioning, specialist units of the NHS England Pricing team, and the NHS Classifications Service and National Casemix Office of NHS Digital.
There are currently 28 members, of whom, 14 members are from NHS England, nine from providers, four from representative bodies, and one from a commissioner. We are withholding the individual names and job titles of non-senior NHS England staff members, as well as names and job titles for external members of staff.
The steering group provides an independent review of candidate devices, by assessing their suitability for inclusion on the high-cost devices exclusions list, based on pre-existing acceptance criteria. A copy of the nomination form for the addition or removal of a drug or device to be excluded from NHS Payment Scheme prices, is attached for your information.
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to reduce waiting lists for echocardiograms.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Cutting National Health Service waiting lists, including for echocardiography, is one of the Government’s top priorities. £2.3 billion was awarded at the Spending Review 2021 to transform diagnostic services over the next three years. Most of this will help increase the number of community diagnostic centres (CDCs) up to 160 by March 2025, expanding and protecting elective planned diagnostic services.
As of February 2024, there are 154 CDCs currently operational that have delivered over six million additional tests since July 2021, including large, standard and hub models. 69 of these CDCs are currently providing transthoracic echocardiograms, with 121 CDCs planning to do so by March 2025. NHS England is working to ensure all standard model CDCs include access to a range of cardiac and respiratory tests. As of December 2023, 7,750 echocardiography tests were carried out at CDCs.
NHS England is working to expand the echocardiography diagnostics workforce. Investment has been made in the training of cardiac and respiratory scientists, including significantly increasing the training supply of echocardiographers. An Echocardiography Training Programme has also been developed in collaboration with the British Society of Echocardiography. In the last two years, 130 individuals started on this programme, and it will continue to be used to increase numbers of accredited echocardiographers.
Additionally, NHS England has published guidance on the development of the Physiological Science Networks, including for echocardiography, to support the local coordination and transformation of physiological science services. This guidance provides integrated care boards with improvement approaches to address waiting times in physiological science services.
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to reduce regional variations in outcomes for patients with (a) hypertrophic cardiomyopathy and (b) other inherited cardiac conditions.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.
Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:
https://www.nhs.uk/conditions/cardiomyopathy/
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to reduce regional variations in diagnosis rates of (a) hypertrophic cardiomyopathy and (b) other inherited cardiac conditions.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.
Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:
https://www.nhs.uk/conditions/cardiomyopathy/
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to increase the number of genetic councillors for hypertrophic cardiomyopathy.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.
Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:
https://www.nhs.uk/conditions/cardiomyopathy/
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether her Department is taking steps to raise awareness of hypertrophic cardiomyopathy in young people.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.
Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:
https://www.nhs.uk/conditions/cardiomyopathy/
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many people have hypertrophic cardiomyopathy.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.
Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:
https://www.nhs.uk/conditions/cardiomyopathy/
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how many people were diagnosed with hypertrophic cardiomyopathy in (a) 2020, (b) 2021 and (c) 2022.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.
Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:
https://www.nhs.uk/conditions/cardiomyopathy/
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to raise awareness of inherited cardiac conditions among GPs.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are not aware of plans to introduce a national leadership role for inherited cardiac conditions. However, NHS England, through the National Genomics Education Team, also deliver and advise on learning and development opportunities that prepare current and future National Health Service professionals to make the best use of genomics in their practice.
Furthermore, the National Genomic Test Directory sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing.
This includes the development of resources to support the workforce across the entire care continuum, for example, in the case of familial hypercholesterolaemia this would include the whole multi-professional team, inclusive of primary care. Furthermore, the Genomic Training
Academy will begin offering education and training through virtual and in person learning for the specialist genomics workforce, including laboratory and clinical staff.
NHS Clinical Genomic Services deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages including families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not have any direct plans to introduce self-referral forms for family members of people with genetic cardiac conditions.
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she plans to introduce self-referral forms for family members of people with genetic cardiac conditions.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are not aware of plans to introduce a national leadership role for inherited cardiac conditions. However, NHS England, through the National Genomics Education Team, also deliver and advise on learning and development opportunities that prepare current and future National Health Service professionals to make the best use of genomics in their practice.
Furthermore, the National Genomic Test Directory sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing.
This includes the development of resources to support the workforce across the entire care continuum, for example, in the case of familial hypercholesterolaemia this would include the whole multi-professional team, inclusive of primary care. Furthermore, the Genomic Training
Academy will begin offering education and training through virtual and in person learning for the specialist genomics workforce, including laboratory and clinical staff.
NHS Clinical Genomic Services deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages including families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not have any direct plans to introduce self-referral forms for family members of people with genetic cardiac conditions.