Asked by: Andrew Gwynne (Independent - Gorton and Denton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the level of awareness amongst medical professional of (a) youth sudden cardiac death, (b) the symptoms of cardiac conditions in the young and (c) the referral pathways for people who have lost a relative under the age of 35 to a cardiac condition.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department expects National Institute for Health and Care Excellence guidance on the use of electrocardiograms for young people presenting with certain symptoms to be followed.
To stop sudden cardiac death (SCD) in young people, the current consensus is to focus on the rapid identification and care of people who are likely to be at risk of SCD due to a family link or because they have had symptoms, and to train people to carry out cardiopulmonary resuscitation and to use defibrillators.
NHS England has published the national service specification Inherited Cardiac Conditions (All Ages) that covers patients who often present as young adults with previously undiagnosed cardiac disease and families requiring follow up due to a death from this cause. This describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised inherited cardiac conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. The Inherited Cardiac Conditions (All Ages) service specification is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
These documents describe the service model and guidance that should be followed to support the diagnosis and treatment of patients. They cover all paediatric cardiac activity, including both surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, which are Level 1 services, the Specialist Children’s Cardiology Centres, Level 2 services, and the Local Children’s Cardiac Centres, Level 3 services, including activity undertaken by the specialist centres on an outreach basis, where it is delivered as part of a provider network, with the aim of ensuring that all patient care is of a consistently high quality.
Asked by: Andrew Gwynne (Independent - Gorton and Denton)
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 misdiagnoses of people under the age of 35 with cardiac symptoms.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England has published the national service specification Inherited Cardiac Conditions (All Ages) that covers patients who often present as young adults with previously undiagnosed cardiac disease and families requiring follow up due to a death from this cause. This describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised inherited cardiac conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. The Inherited Cardiac Conditions (All Ages) service specification is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
These documents describe the service model and guidance that should be followed to support the diagnosis and treatment of patients. They cover all paediatric cardiac activity, including both surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, which are Level 1 services, the Specialist Children’s Cardiology Centres, Level 2 services, and the Local Children’s Cardiac Centres, Level 3 services, including activity undertaken by the specialist centres on an outreach basis, where it is delivered as part of a provider network, with the aim of ensuring that all patient care is of a consistently high quality.
Asked by: Lord Kamall (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what are the Health Data Research UK projects that access NHS data where specific project independent review was not received from NHS England's Advisory Group for Data, and what is the current status of those projects.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England has a Data Sharing Agreement, project identification code DARS-NIC-381078-Y9C5K, with a consortium of academic organisations in the United Kingdom for the purpose of the Health Data Research UK-led, British Heart Foundation Data Science Centre’s CVD-COVID-UK programme.
This agreement was put in place by NHS Digital prior to its merger with NHS England in 2023, and prior to the establishment of NHS England’s Advisory Group for Data (AGD). The AGD was informed of a Senior Information Risk Owner decision to approve an amendment to the agreement on 22 February 2024.
The agreement was subject to reviews by NHS Digital’s Independent Group Advising on the Release of Data (IGARD) on 25 June 2020, 23 July 2020, 15 October 2020, 3 December 2020, 25 February 2021, 29 July 2021, 29 July 2021, 5 May 2022, and 24 November 2022. It was also subject to advice from the Professional Advisory Group on 24 June 2020 and 28 July 2021.
The agreement allowed the data controllers under that agreement to approve access to National Health Service data for individual projects, subject to approval per project by the CVD-COVID-UK oversight committee, which included a representative of NHS Digital/NHS England. Individual projects were not reviewed by IGARD or the AGD.
Under the terms of the agreement, the CVD-COVID-UK oversight committee is required to maintain a list of projects undertaken under the agreement and provide a quarterly report to NHS Digital/NHS England. The following table lists the projects and their current status from the latest report provided in April 2025:
Secure Data Environment research project reference | Current project status | Project title |
CCU001 | Live - Data in Use | Investigating the effects of angiotensin converting enzyme inhibitors and angiotensin receptor blockers on COVID-19 outcomes |
CCU002 | Live - Data in Use | SARS-CoV-2 infection and vaccination and the risk of vascular events |
CCU003 | Live - Data in Use | Direct and indirect effects of the COVID-19 pandemic in individuals with cardiovascular disease (CVD) |
CCU004 | Live - Data in Use | COVID-19 and CVD risk prediction |
CCU005 | Live - Data in Use | Data management and analysis methods |
CCU007 | Live - Data in Use | Impact of COVID-19 pandemic on heart disease patients undergoing cardiac surgery |
CCU008 | Completed | Evaluating impact of COVID-19 pandemic on the prevalence and management of risk factors |
CCU010 | Live - Data in Use | In people with CVD and COVID-19, what is the influence of multi-morbidity on risk of poorer outcomes? |
CCU013 | Live - Data in Use | High-throughput electronic health record phenotyping approaches |
CCU014 | Live - Data in Use | Assessing the impact of COVID-19 on clinical pathways using a medicines approach |
CCU018 | Live - Data in Use | COVID-19 infection during pregnancy on CVD and related risk factors |
CCU019 | Live - Data in Use | Identification and personalised risk prediction for severe COVID-19 in patients with rare disorders impacting cardiovascular health |
CCU020 | Completed | Evaluation of antithrombotic use and COVID-19 outcomes |
CCU022 | Live - Data in Use | Genomics of multimorbidity and CVD associated with susceptibility to COVID-19 infection and complications |
CCU023 | Live - Data in Use | Repurposing medicines used to treat CVD risk to prevent COVID-19 |
CCU024 | Completed | CovPall-Connect. Evaluation of how palliative and end of life care teams have responded to COVID-19: Connecting to boost impact and data assets |
CCU028 | Live - Data in Use | Coronary revascularisation and outcomes before and after the COVID-19 pandemic |
CCU029 | Live - Data in Use | Child hospital admission with COVID-19: risk factors; risk groups; and NHS care utilisation |
CCU030 | Live - Data in Use | Examining potential factors underlying the increased risk of severe COVID-19 experienced by people with intellectual and developmental disabilities |
CCU032 | Live - Data in Use | The effects of COVID-19 on heart failure subtypes |
CCU035 | Completed | Are people with COVID-19 and pre-existing respiratory disease at a higher risk of future cardiovascular and venous thromboembolic events compared with COVID-19 patients without pre-existing respiratory disease? |
CCU036 | Live - Data in Use | The impact of previous exposure to COVID-19 and the safety of COVID-19 vaccination for fertility and pregnancy outcomes |
CCU037 | Live - Data in Use | Improving methods to minimise bias in ethnicity data for more representative and generalisable models, using CVD in COVID-19 as an example |
CCU038 | Live - Data in Use | Evaluating the impact of COVID-19 on critical care outcomes |
CCU040 | Completed | Investigating why some people with diabetes have a greater risk of becoming seriously unwell or dying with COVID-19 |
CCU043 | Live - Data in Use | Investigating new onset diabetes following COVID-19 infection |
CCU045 | Live - Data in Use | The impact of COVID-19 on heart failure epidemiology, quality of care and outcomes across primary and secondary care |
CCU046 | Live - Data in Use | Severe mental illness and receipt of acute cardiac care and mortality following myocardial infarction |
CCU049 | Live - Data in Use | Healthcare utilisation in individuals with Long COVID |
CCU051 | Completed | Un-vaccination and under-vaccination against SARS-CoV-2 in the UK |
CCU052 | Live - Data in Use | An observational retrospective cohort study describing the changing epidemiology pre, during and post COVID-19 of asthma, interstitial lung disease, and chronic obstructive pulmonary disease in England |
CCU053 | Live - Data in Use | Risks and benefits of treatment with SGLT2 inhibitors and the impact of intercurrent illness with COVID-19 |
CCU056 | Completed | Socio-demographic make-up of patients undergoing surgical and transcatheter aortic valve intervention in England and the impact of COVID-19 on this |
CCU057 | Live - Data in Use | Risks for mortality in people with severe mental illnesses during the COVID-19 pandemic |
CCU058 | Live - Data in Use | COVID-19 impact on the long-term outcomes of Improving Access to Psychological Therapies in people with long-term cardiovascular conditions |
CCU059 | Completed | Which combinations of multiple long-term conditions are associated with the greatest risk of hospital admission over the winter season, and to what extent does COVID-19 or influenza vaccination modify this risk? |
CCU060 | Live - Data in Use | Improving characterisation, prediction and intervention for COVID-19 and influenza-related morbidity and mortality |
CCU063 | Live - Data in Use | The effect of COVID-19 on maternal and paediatric health among individuals whose first language isn’t English and require an interpreter in England: from preconception to adolescence |
CCU064 | Live - Data in Use | Impact of COVID-19 clinical care pathway changes on gestational diabetes incidence and pregnancy outcomes in England |
CCU066 | Live - Data in Use | Changes in acute cardiac care of patients with reduced kidney function during the COVID-19 pandemic |
CCU068 | Completed | The impact of vaccination on the excess clinical risks of COVID-19 in patients with congenital heart disease |
CCU069 | Live - Data in Use | RARE-CVD-COVID: To understand COVID-19 impact on intersectional disparity in rare versus common cardiometabolic diseases: CVD and metabolic diseases, including diabetes |
CCU070 | Live - Data in Use | Supporting novel trial designs using healthcare systems data to mitigate the impact of COVID-19 on diabetes research |
CCU071 | Live - Data in Use | A regional approach for policy makers to tackle health inequalities in CVD and its risk factors |
CCU072 | Live - Data in Use | Influence of COVID-19 on British burden of CVD |
CCU073 | Live - Data in Use | Impact of COVID-19 on the association between Type 2 diabetes and incidence of CVD |
CCU074 | Live - Data in Use | Improving the accuracy, equity and efficiency of using healthcare systems data for recruitment to a clinical trial involving people with CVD and diabetes mellitus: a simulation study in the “Covid era” using the CVD‑COVID‑UK dataset |
CCU075 | Live - Data in Use | Impact of the COVID-19 pandemic on corticosteroid use and side effects in Takayasu arteritis and ANCA-associated vasculitis in England |
CCU076 | Live - Data in Use | The effect of COVID-19 infection on cardiovascular outcomes: an interaction analysis with environmental exposure |
CCU077 | Live - Data in Use | Risk assessment and long-term outcomes of acute coronary syndrome management strategy in cardio-oncology patients before and after the COVID-19 era |
CCU078 | On hold | Foresight: a generative artificial intelligence model of patient trajectories across the COVID-19 pandemic |
CCU079 | Live - Data in Use | Investigating the diagnoses of conditions among children in England following SARS-CoV-2 infections compared to general respiratory infections |
CCU080 | Live - Data in Use | Impact of COVID-19 on the use of cardiovascular imaging |
CCU081 | Live - Data in Use | Investigating the impact of COVID-19 on cardiovascular and thromboembolic events in idiopathic inflammatory myopathies and the incidence of connective tissue diseases |
CCU082 | Live - Data in Use | Pulmonary arterial hypertension in repaired congenital heart disease: impact of the COVID-19 pandemic on prevalence; late diagnosis; and outcomes |
CCU083 | Live - Data in Use | Trends in choice of management strategy for NSTE-ACS among patients with previous bypass surgery before and after the COVID-19 pandemic |
CCU084 | Live - Data in Use | Impact of COVID-19 on stroke incidence, severity, aetiology, management, and outcome in younger versus older individuals in England |
CCU085 | Live - Data in Use | STROKE-IMPACT: What are the long-term consequences of stroke on the patient and to the NHS, and how does COVID-19 contribute to variation? |
CCU086 | Live - Data in Use | A data landscape review of datasets used in the surveillance of neurological complications of COVID-19 |
CCU087 | Live - Data in Use | The impact of COVID-19 on heart failure outcomes: the moderation roles of diabetes and obesity |
CCU088 | Live - Data in Use | The impact of COVID-19 on the management of iron deficiency, with or without anaemia, in primary and secondary care |
CCU089 | Live - Data in Use | The impact of comorbidity, socioeconomic status, and ethnicity on waiting times for surgery before and after the COVID-19 pandemic |
CCU090 | Live - Data in Use | The impact of cardiac rehabilitation following transcatheter aortic valve implantation before and after the COVID-19 pandemic |
CCU092 | Live - Data in Use | Simulation modelling of CVD development and management, identifying the extent to which COVID-19 has impacted on the assessment and treatment of CVD. |
CCU093 | Live - Data in Use | Understanding the relationship between diabetes and the development of multiple long-term conditions in England, Scotland, and Wales during and after the COVID-19 pandemic |
CCU094 | Live - Data in Use | Identifying preventative opportunities for coronary heart disease and stroke in multi-ethnic patients with non-cardiovascular conditions including COVID-19 |
CCU095 | Live - Data in Use | Quantifying and mitigating bias and health inequalities induced by clinical risk models predicting COVID-19-related risks of people with CVD and diabetes. |
CCU096 | Live - Data in Use | Impact of COVID-19 on obesity and risks of cardio-renal-metabolic outcomes |
CCU097 | Live - Data in Use | Drivers, consequences and the COVID-19 pandemic’s effect on severe hyperglycaemia at type 2 diabetes diagnosis |
CCU100 | Live - Data in Use | Impact of COVID-19 on fatty liver disease and cardiovascular outcomes in England, across ethnicities and social deprivation |
CCU101 | Live - Data in Use | Lung-Pal-Equity: To identify patterns in use of hospital services in the last year of life for those with advanced lung disease and to examine inequalities by socio-economic group, including before, during and after the COVID-19 pandemic |
The status of project CCU078 has been updated to reflect that NHS England paused the project on 29 May. Further detail on the projects is published on the British Heart Foundation Data Science Centre’s website.
Asked by: Steve Barclay (Conservative - North East Cambridgeshire)
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 there is adequate infrastructure to offer access to treatment for people living with inherited cardiac conditions in the East of England.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England has a published a national service specification for inherited cardiac conditions. This sets out what guidance should be followed, and the services provided to support diagnosis and treatment of patients with previously undiagnosed cardiac disease. This also includes support to families requiring follow up due to a death from this cause. The specification is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
The national service specification also includes a requirement for specialised inherited cardiac conditions services to investigate suspected cases.
NHS England is currently reviewing this service specification working with a broad range of stakeholders including NHS clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice and the British Heart Foundation.
There are plans for all referrals to the Inherited Cardiac Conditions service in Cambridgeshire to go to Cambridge University Hospitals NHS Foundation Trust and Royal Papworth Hospital. This will operate a specialist centre for Cambridgeshire, with a multi-disciplinary team already in place to support this.
Asked by: Satvir Kaur (Labour - Southampton Test)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what information his Department holds on the number of undiagnosed cardiovascular diseases and conditions in young people; and if he will make an assessment of the potential impact of undiagnosed cardiovascular diseases and conditions on young people.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Data on the number of undiagnosed cardiovascular diseases and conditions in young people is not held centrally as these conditions are undiagnosed. The National Health Service, however, offers screening to young persons, those aged under 35 years old, where a family member has suffered from a sudden cardiac death. The charity Cardiac Risk in the Young offers subsidised cardiac screening to all young people aged between 14 and 35 years old and may hold data on the number of young people requesting screening outside of the NHS.
NHS England published in 2017 a national service specification for Inherited Cardiac Conditions (ICC), which defines the standards of care expected from organisations funded by NHS England. This specification covers young adults with previously undiagnosed cardiac disease. The aim of the ICC services is to improve the diagnosis, treatment, and outcome of patients with ICCs.
NHS England is currently reviewing this service specification, working with a broad range of stakeholders as part of the review, including NHS clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. NHS England does not have a national audit programme for ICCs, and therefore no treatment data is held centrally.
Asked by: Freddie van Mierlo (Liberal Democrat - Henley and Thame)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what comparative assessment he has made of levels of young people dying from sudden cardiac death in (a) England and (b) other European countries; and what steps he plans to take to reduce levels of sudden cardiac death in young people.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The treatment and prevention of cardiovascular disease is a priority for the Government. We want people to have the best chance of survival from cardiac arrest, and rapid intervention is central to improving outcomes. NHS England has published a national service specification for inherited cardiac conditions that covers patients who often present as young adults with a previously undiagnosed cardiac disease or from families requiring a follow up due to a death from this cause. Further information on the national service specification for inherited cardiac conditions is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
The service specification describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised inherited cardiac conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review, including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation.
The consensus at present is to focus on the rapid identification and care of people who are likely to be at risk of sudden cardiac death and automated external defibrillator use for people who suffer a cardiac arrest.
Asked by: Mike Amesbury (Independent - Runcorn and Helsby)
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 awareness of (a) cardiac health and (b) physical activity increasing risk of strokes in young people in (i) schools, (ii) universities and (iii) sports facilities.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The UK National Screening Committee last reviewed screening for sudden cardiac death (SCD) in people under the age of 39 years old in 2019 and concluded that screening should not be offered, with further information available at the following link:
https://view-health-screening-recommendations.service.gov.uk/sudden-cardiac-death/
Research showed that current tests are not accurate enough to use in young people without symptoms, and that treatments and interventions were not based on good scientific evidence to prevent SCD.
To stop SCD in young people, the current consensus is to focus on rapid identification and care of people who are likely to be at risk of SCD due to a family link or because they have had symptoms, and to train people to carry out cardiopulmonary resuscitation and to use defibrillators.
NHS England has published a national service specification for Inherited Cardiac Conditions, that covers patients who often present as young adults with previously undiagnosed cardiac disease, or families requiring a follow up due to a death from this cause. This describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised Inherited Cardiac Conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review, including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. Further information on the service specification for Inherited Cardiac Conditions is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
These documents describe the service model and guidance that should be followed to support the diagnosis and treatment of patients. They cover all paediatric cardiac activity, specifically surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, or Level 1 services, the Specialist Children’s Cardiology Centres, or Level 2 services, and the Local Children’s Cardiac Centres, or Level 3 services, including activity undertaken by the specialist centres on an outreach basis where it is delivered as part of a provider network, with the aim of ensuring that all patient care is of a consistently high quality.
Asked by: Mike Amesbury (Independent - Runcorn and Helsby)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of expanding access to diagnostic (a) checks and (b) screenings to improve detection of undiagnosed heart conditions in young people.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The UK National Screening Committee last reviewed screening for sudden cardiac death (SCD) in people under the age of 39 years old in 2019 and concluded that screening should not be offered, with further information available at the following link:
https://view-health-screening-recommendations.service.gov.uk/sudden-cardiac-death/
Research showed that current tests are not accurate enough to use in young people without symptoms, and that treatments and interventions were not based on good scientific evidence to prevent SCD.
To stop SCD in young people, the current consensus is to focus on rapid identification and care of people who are likely to be at risk of SCD due to a family link or because they have had symptoms, and to train people to carry out cardiopulmonary resuscitation and to use defibrillators.
NHS England has published a national service specification for Inherited Cardiac Conditions, that covers patients who often present as young adults with previously undiagnosed cardiac disease, or families requiring a follow up due to a death from this cause. This describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised Inherited Cardiac Conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review, including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. Further information on the service specification for Inherited Cardiac Conditions is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
These documents describe the service model and guidance that should be followed to support the diagnosis and treatment of patients. They cover all paediatric cardiac activity, specifically surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, or Level 1 services, the Specialist Children’s Cardiology Centres, or Level 2 services, and the Local Children’s Cardiac Centres, or Level 3 services, including activity undertaken by the specialist centres on an outreach basis where it is delivered as part of a provider network, with the aim of ensuring that all patient care is of a consistently high quality.
Asked by: Mike Amesbury (Independent - Runcorn and Helsby)
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 improve detection of undiagnosed heart conditions in young people.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The UK National Screening Committee last reviewed screening for sudden cardiac death (SCD) in people under the age of 39 years old in 2019 and concluded that screening should not be offered, with further information available at the following link:
https://view-health-screening-recommendations.service.gov.uk/sudden-cardiac-death/
Research showed that current tests are not accurate enough to use in young people without symptoms, and that treatments and interventions were not based on good scientific evidence to prevent SCD.
To stop SCD in young people, the current consensus is to focus on rapid identification and care of people who are likely to be at risk of SCD due to a family link or because they have had symptoms, and to train people to carry out cardiopulmonary resuscitation and to use defibrillators.
NHS England has published a national service specification for Inherited Cardiac Conditions, that covers patients who often present as young adults with previously undiagnosed cardiac disease, or families requiring a follow up due to a death from this cause. This describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised Inherited Cardiac Conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review, including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. Further information on the service specification for Inherited Cardiac Conditions is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
These documents describe the service model and guidance that should be followed to support the diagnosis and treatment of patients. They cover all paediatric cardiac activity, specifically surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, or Level 1 services, the Specialist Children’s Cardiology Centres, or Level 2 services, and the Local Children’s Cardiac Centres, or Level 3 services, including activity undertaken by the specialist centres on an outreach basis where it is delivered as part of a provider network, with the aim of ensuring that all patient care is of a consistently high quality.
Asked by: Tanmanjeet Singh Dhesi (Labour - Slough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent steps his Department has taken to increase awareness of the symptoms of heart valve disease.
Answered by Andrew Gwynne
Cardiovascular disease (CVD), which includes heart valve disease, is one of the key priorities for the Health Innovation Network, comprising of 15 organisations across England that operate as the innovation arm of the National Health Service. The network is committed to supporting the development of innovations across CVD clinical pathways to make high impact changes to population health.
An ambition of NHS England’s Long Term Plan (LTP) is to raise awareness of the symptoms of heart failure and to ensure early and rapid access to diagnostic tests and treatment, setting out that by 2023/24, 54,000 additional people with heart failure and heart vascular disease will be detected and diagnosed in the community. The LTP also sets out that people with heart failure and heart vascular disease will be better supported by multi-disciplinary teams as part of Primary Care Networks, and that from July 2019, all patients in England have been covered by a Primary Care Network.