Asked by: Lord Mendelsohn (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the impact on immunocompromised people arising from (1) shutting down the Anti-Viral task force, (2) ending any stakeholder engagement through the Enhanced Protection Programme, (3) withdrawing vaccine boosters for the families of the immunocompromised, (4) ending the collection of data on Covid infections via the Office for National Statistics, and (5) ending access to anti-virals through the Covid Medicines Delivery Units and transferring this to GPs; and what steps they are taking to enhance the protection of the clinically vulnerable community from COVID-19.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Those that remain at higher risk from COVID-19 remain a priority for the Government and continue to be offered enhanced protections such as treatments, booster vaccines, free lateral flow tests and public health advice.
Functions of the Antivirals and Therapeutics Taskforce (ATTF) have now moved to different parts of the Department and the National Health Service. The NHS will continue to deliver treatment for COVID-19 patients and will operate in line with evidence-based recommendations from National Institute for Health and Care Excellence, following the established processes in this area.
Following the closure of the enhanced protection programme stakeholder forum, UK Health Security Agency (UKHSA) recognises the importance of continuing to engage with patient charities and other stakeholders, and further information on continuing stakeholder engagement will be shared in due course.
On 27 January 2023 the Government accepted Joint Committee on Vaccination and Immunisation (JCVI) interim advice that there could be a further booster programme in autumn 2023 for those at higher risk of severe COVID-19 in preparation for winter 2023 to 2024. JCVI will continue its rolling review of the vaccination programme and will provide further advice on which groups including carers and family members of immunosuppressed individuals should be included in the autumn 2023 COVID-19 vaccination programme in due course.
The approach to COVID-19 surveillance is being actively reviewed to ensure it is proportionate, cost effective and considered alongside how we monitor a range of other infectious diseases that present a similar threat.
The UKHSA will continue to publish regular reports on COVID-19 which will contribute to our situational awareness. These include our weekly surveillance reports, which provide data on infection rates and hospitalisation numbers. We also maintain the ability to track the latest variants through our genomics capabilities which assess the risks posed by different strains of the virus.
Integrated care boards (ICBs) are responsible for the continued delivery of COVID-19 treatments, including where appropriate transitioning the delivery of community-based COVID-19 treatments away from covid medicines delivery unit to routine care pathways by the end of June. ICBs have the flexibility to create a routine patient access pathway that best meets local needs and circumstances, including for immunocompromised patients.
NHS England is working closely with local health systems, supporting ICBs to develop service delivery plans which ensure continued timely access to assessment and treatment that meet the needs of their local populations. To support the transition away from pandemic-specific arrangements NHS England is regularly engaging with charities, patient groups and other stakeholders to understand where national and local action may be required to ensure transition readiness.
NHS England is providing national communications to patients, healthcare professionals and local system leaders to ensure clarity on upcoming changes.
Highest risk patients will continue to have access to free tests, however the way patients will access tests may change later this year.
Asked by: Liz Twist (Labour - Blaydon)
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 address the backlog in NHS Genomics Medicines Service.
Answered by Will Quince
Minimising the time taken to deliver a genomic test is a key priority for NHS England. NHS England has implemented a monthly data collection and monitoring system across all seven Genomic Laboratory Hubs (GLHs) to better identify variation, implement service improvements and to ensure agreed national turnaround times are met in every region for all patients.
The COVID-19 pandemic has had an ongoing impact on the genomic testing pathway. NHS England are providing the GLHs with additional funding to support recovery and reduce backlogs caused by the COVID-19 pandemic.
GLHs are also undertaking clinical risk assessments on all cases waiting for results so that any can be prioritised for early reporting as needed.
Clinicians are also able to classify cases as ‘urgent’ when a patient has a deteriorating or unstable condition that requires a quicker diagnosis.
Asked by: Alicia Kearns (Conservative - Rutland and Melton)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what regulatory framework is in place for foreign parties that access and utilise human genetic resources when operating in the UK.
Answered by George Freeman
Organisations which hold human genetic data are subject to the UK General Data Protection Regulation (GDPR). In addition, Genomics England, UK Biobank and NIHR BioResource actively consider national security in decision making about partnerships with companies overseas. These organisations consulted with security personnel on a regular basis to ensure partnerships are aligned with our national security interests.
The Human Tissue Authority, a non-departmental body of the Department for Health and Social Care, is the independent regulator of organisations that remove, store and use human tissue for research, medical treatment, post-mortem examination, education and training, and display in public. It enforces the Human Tissue Act 2004 which regulates the removal, storage and use of human tissue.
Asked by: Carla Lockhart (Democratic Unionist Party - Upper Bann)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to priority four of the UK Rare Diseases Framework, what steps his Department is taking to reduce regional variations in access to specialist care for patients with (a) hereditary angioedema and (b) other rare diseases.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
NHS England regularly assesses the geographic spread of patients accessing highly specialised services. If there are any regional variations, NHS England will work with the relevant service to investigate and address these issues. No specific assessment has been made of patient-supported education as a means of reducing regional variation in care for hereditary angioedema or other rare diseases.
No specific assessment has been made of the adequacy of the recognition by clinicians in emergency settings of hereditary angioedema and other potentially life-threatening rare diseases. However, the 2021 UK Rare Diseases Framework aims to improve the awareness of all rare diseases, including hereditary angioedema. England’s second Rare Diseases Action Plan, published in February 2023, reports on progress made to increase knowledge and improve the resources available to healthcare professionals. This includes the development of GeNotes, an educational resource that aims to increase the awareness of genetic and rare diseases amongst healthcare professionals. The Genomics Education Programme actively delivers education and training to the National Health Service workforce to support awareness, knowledge and management of rare disease.
Asked by: Carla Lockhart (Democratic Unionist Party - Upper Bann)
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 patient-supported education as a means of reducing regional variation in care for (a) hereditary angioedema and (b) other rare diseases.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
NHS England regularly assesses the geographic spread of patients accessing highly specialised services. If there are any regional variations, NHS England will work with the relevant service to investigate and address these issues. No specific assessment has been made of patient-supported education as a means of reducing regional variation in care for hereditary angioedema or other rare diseases.
No specific assessment has been made of the adequacy of the recognition by clinicians in emergency settings of hereditary angioedema and other potentially life-threatening rare diseases. However, the 2021 UK Rare Diseases Framework aims to improve the awareness of all rare diseases, including hereditary angioedema. England’s second Rare Diseases Action Plan, published in February 2023, reports on progress made to increase knowledge and improve the resources available to healthcare professionals. This includes the development of GeNotes, an educational resource that aims to increase the awareness of genetic and rare diseases amongst healthcare professionals. The Genomics Education Programme actively delivers education and training to the National Health Service workforce to support awareness, knowledge and management of rare disease.
Asked by: Carla Lockhart (Democratic Unionist Party - Upper Bann)
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 adequacy of the recognition by clinicians in emergency settings of (a) hereditary angioedema and (b) other potentially life-threatening rare diseases.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
NHS England regularly assesses the geographic spread of patients accessing highly specialised services. If there are any regional variations, NHS England will work with the relevant service to investigate and address these issues. No specific assessment has been made of patient-supported education as a means of reducing regional variation in care for hereditary angioedema or other rare diseases.
No specific assessment has been made of the adequacy of the recognition by clinicians in emergency settings of hereditary angioedema and other potentially life-threatening rare diseases. However, the 2021 UK Rare Diseases Framework aims to improve the awareness of all rare diseases, including hereditary angioedema. England’s second Rare Diseases Action Plan, published in February 2023, reports on progress made to increase knowledge and improve the resources available to healthcare professionals. This includes the development of GeNotes, an educational resource that aims to increase the awareness of genetic and rare diseases amongst healthcare professionals. The Genomics Education Programme actively delivers education and training to the National Health Service workforce to support awareness, knowledge and management of rare disease.
Asked by: Tulip Siddiq (Labour - Hampstead and Kilburn)
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 help improve genomic testing and care in the UK.
Answered by Will Quince
The NHS Genomic Medicine Service was launched in 2018 to support standardised, high quality and equitable access to genomic medicine across the National Health Service in England. Since then, significant progress has been made to improve genomic testing and care. This includes the establishment of a national network of seven NHS Genomic Laboratory Hubs to deliver testing as directed by the National Genomic Test Directory, which outlines the full range of genomic testing offered by the NHS, including tests for 3,200 rare diseases and over 200 cancer clinical indications.
The NHS now offers several world-leading services. It is the first health care system in the world to systematically offer whole genome sequencing (WGS) as part of routine care, and it has launched a rapid WGS service for acutely unwell children with a likely monogenic disorder and a world-leading National Fetal Exome Sequencing Service.
The NHS also has an important role in delivering a comprehensive clinical genomic and counselling service for patients of all ages and their families, who have, or are at risk of having, a rare genetic and genomic condition, including inherited cancer.
Last year, in October 2022, NHS England published the first NHS Genomics Strategy, ‘Accelerating Genomic Medicine in the NHS’, which outlines the future vision for embedding genomics in the NHS over the next five years.
Asked by: Lord Alton of Liverpool (Crossbench - Life peer)
Question to the Department for Science, Innovation & Technology:
To ask His Majesty's Government, further to the remarks by the Minister of State, Department for Science, Innovation and Technology (HC Deb col 121WH) where he stated that Genomics England “was suffering several hack attacks from BGI each week”, what steps they are taking, if any, against that company; and what steps they will take to scrutinise other Chinese genomic companies.
Answered by Viscount Camrose - Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)
There is no recorded evidence of BGI attempting to hack Genomics England in 2014, and the Minister has amended the Hansard record accordingly. However, like most organisations they do receive regular attempts to access their systems, for which there are appropriate defences in place and no successful breaches have occurred.
Our current protocols allow Genomics England, UK Biobank and NIHR BioResource to consider national security in decision making about partnerships with companies overseas. These organisations have consulted with security personnel in the past to ensure partnerships are aligned with our national security interests.
As part of the new UK Biological Security Strategy, the Government is undertaking a full programme of work to assess how we can minimise the risks from biological data to protect our burgeoning bioeconomy, shape global norms and standards, without stifling innovation, and build confidence in sharing personal data to improve health outcomes in the UK and across the world.
We will conduct this work in conjunction with our partners at home, including Genomics England, the NHS and UK Biobank, and with our partners and allies around the world. The new UK Biological Security Strategy, to be published in the coming months, is part of the wider strategic direction of the Integrated Review, under which we are reviewing our policies on export controls and addressing potential vendors of concern across the economy.
Asked by: Stephen Morgan (Labour - Portsmouth South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what plans the Government has to improve the quality of care for patients with (a) Huntington's disease and (b) other neurological conditions.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
NHS England plans to improve the quality of care for Huntington’s disease and other neurological conditions through continued developments to Neuroscience services.
Genomic testing for patients with Huntington disease is included on the Test Directory under the R.68 and R383 clinical indication. Over the last 12 months the NHS Genomics Medicines Service has carried out over 900 tests for these clinical indications.
NHS England’s neuroscience transformation programme (NSTP) is developing a number of optimal pathways for neurology services which includes Huntington's disease. Following extensive stakeholder engagement, the NSTP is developing a new definition for ‘specialised’ neurology and a model for neurology services. The transformation programme will provide integrated care systems (ICS) with the tools, information and resources, they will need to drive the transformation in their neurology services, as they take on joint or delegated responsibility for commissioning specialised neurology services from April 2023 onwards.
Asked by: Darren Jones (Labour - Bristol North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps Department has taken to increase awareness of Ehlers-Danlos Syndromes amongst NHS staff.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
England’s first Rare Diseases Action Plan was published on 28 February 2022 and included specific actions to increase awareness of rare diseases, such as Ehlers Danlos Syndromes (EDS), amongst National Health Service staff.
Progress against these actions is detailed in England’s second Rare Diseases Action Plan, published on 28 February 2023. This includes ongoing work by Health Education England (HEE), as part of their Genomics Education Programme, to deliver education and training to the NHS workforce to support awareness, knowledge and management of rare diseases as well as other conditions with a genomic aetiology, including EDS.
England’s 2023 Rare Diseases Action Plan also includes a new commitment for HEE to publish and implement specific strategies for increasing awareness of rare diseases in the nursing, midwifery, pharmacy and primary care workforce over the coming year.