Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will make an assessment of the system readiness to introduce whole genome sequencing for newborns as part of the NHS.
Answered by Andrew Stephenson
The Generation Study is a research study that will evaluate the utility and feasibility of screening newborns for a larger number of childhood-onset rare genetic conditions in the National Health Service, using whole genome sequencing. Genomics England are working closely with the UK National Screening Committee (UK NSC) to ensure the research generates the right evidence to inform any potential screening recommendations by the UK NSC and commissioning decisions by the NHS. If the evidence from the study indicates that the use of whole genome sequencing in newborn screening is effective, meets the criteria set by the UK NSC and a positive recommendation is made by the UK NSC, health ministers in the United Kingdom will then decide if this recommendation should be accepted. In the meantime, the UK NSC continues to assess proposals for additional conditions for newborn screening as they are received.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent progress has been made on the NHS Generation Study.
Answered by Andrew Stephenson
Genomics England has established a set of four principles to determine which rare genetic conditions should be looked for as part of their research study. In October 2023, Genomics England published a list of over 200 conditions which will be screened for as part of the study. Recruitment to the study is due to begin in early 2024. Genomics England have been working with a group of National Health Service sites who will be among the first to recruit participants.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will make an assessment of the adequacy of the capacity of the UK National Screening Committee to review new rare conditions for inclusion in a national newborn heel prick screening programme.
Answered by Andrew Stephenson
The UK National Screening Committee’s (UK NSC) remit was expanded last year to consider targeted, and risk stratified screening proposals, in addition to covering population screening programmes. A recruitment campaign is ongoing to expand capacity to be able to manage the increased volume of work expected. In terms of reviewing the evidence for newborn blood spot conditions the UK NSC has an annual call mechanism where proposals to screen for new topics can be submitted. The annual call for 2024 will open in July.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if her Department will make an assessment of the potential merits of mandating the use of carbon monoxide alarms in all health settings.
Answered by Andrew Stephenson
There are no plans to make an assessment. Guidance on ventilation and air filtration systems in National Health Service facilities is provided in Health Technical Memorandum (HTM) 03-01: Specialised Ventilation for Healthcare Premises. As with all guidance provided on the NHS estate, it is reviewed on an ongoing basis and will be updated to reflect changes in approach to relevant areas. The memorandum is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2021/05/HTM0301-PartA-accessible-F6.pdf
There is a range of national resources available to promote carbon monoxide safety. This includes guidance on GOV.UK, the NHS website and from the Health and Safety Executive. The UK Health Safety Agency also has a programme of work, much of it delivered in partnership with other organisations, to increase awareness of carbon monoxide exposure risks and help to prevent them.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of mandating the use of carbon monoxide alarms in all health settings.
Answered by Maria Caulfield
It has not proved possible to respond to the hon. Member in the time available before Prorogation.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to findings in the All-Party Parliamentary Carbon Monoxide Group's report entitled Prepare, Practice, Protect: Improving Carbon Monoxide Safety in Health and Care Services, published July 2023, what recent assessment he has made of the adequacy of funding for national resources on carbon monoxide funding.
Answered by Maria Caulfield
No recent assessment has been made.
There is a range of national resources available to promote carbon monoxide safety. This includes guidance on GOV.UK, the National Health Service website and from the Health and Safety Executive. The UK Health Security Agency also has a programme of work, much of it delivered in partnership with other organisations, to increase awareness of carbon monoxide exposure risks and help to prevent them.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he is taking steps with Cabinet colleagues to help (a) prevent and (b) diagnose carbon monoxide poisoning in (i) healthcare settings and (ii) the homes of vulnerable people.
Answered by Maria Caulfield
The UK Health Security Agency (UKHSA) works with national and local stakeholders, public health partners and Government Departments to develop advice and actions which can be taken to improve diagnosis and prevent accidental exposure to carbon monoxide (CO) in healthcare settings and homes, including the homes of vulnerable people.
It has a programme of work to increase awareness and prevent exposure to CO. This includes participating in the cross-Government group on gas safety and carbon monoxide awareness and providing updated and consistent evidence, for example, for medical professionals diagnosing and managing CO poisoning in patients, and during antenatal checks.
UKHSA produces advice for the public on the risks from CO and regularly issues national press releases to raise public awareness of the dangers. In addition, UKHSA has published research quantifying CO exposure in the population, identifying risk factors for exposure and interventions to reduce the risk to the public.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has considered the potential merits of taking steps to help prevent the withdrawal of medical (a) products and (b) treatments for rare conditions from the UK market where that withdrawal would leave patients without access to such a product or treatment.
Answered by Will Quince
Companies may decide to stop manufacturing a medicine for several reasons including commercial decisions, manufacturing capacity restraint and production problems. Companies are free to review their portfolios as they think necessary, and the Department has no powers to insist that a company continues to keep a product on the market.
There is a team within the Department that deals specifically with medicine supply problems. It has well-established procedures to deal with medicine shortages and discontinuations, whatever the cause, and works closely with the Medicines and Healthcare products Regulatory Agency, the pharmaceutical industry, NHS England, and others operating in the supply chain to help prevent shortages and to ensure that the risks to patients are minimised when shortages do arise. The team will also communicate management advice to the National Health Service advising clinicians on how to manage medicine supply issues.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 15 May 2023 to Question 183537 on Rare Diseases, for what reason the proposal to provide patients with alert cards was not included in the England Rare Diseases Action Plan 2023; and how his Department plans to ensure adequate co-ordination of care for people with rare conditions in emergency settings.
Answered by Will Quince
There are currently no plans to include a proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.
In the Second Progress Report from the Rare Disease Policy Board (2018), NHS England proposed to give every patient with a rare disease an ‘alert card’, which would include information about the patient’s rare disease. This proposal to develop ‘alert cards’ was not progressed at the time due to capacity constraints.
This proposal has not featured in the subsequent England Rare Diseases Action Plans (2022 and 2023), and NHS England is now focussing on delivering against the actions identified in these new plans. Progress is being made on existing actions to improve coordination of care and awareness of rare diseases amongst all health care professionals, including those who work in emergency settings.
Asked by: Liz Twist (Labour - Blaydon and Consett)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 15 May 2023 to Question 183537 on Rare Diseases, whether he plans to include the proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.
Answered by Will Quince
There are currently no plans to include a proposal to provide alert cards to patients with rare diseases in the England Rare Diseases Action Plan in the next five years.
In the Second Progress Report from the Rare Disease Policy Board (2018), NHS England proposed to give every patient with a rare disease an ‘alert card’, which would include information about the patient’s rare disease. This proposal to develop ‘alert cards’ was not progressed at the time due to capacity constraints.
This proposal has not featured in the subsequent England Rare Diseases Action Plans (2022 and 2023), and NHS England is now focussing on delivering against the actions identified in these new plans. Progress is being made on existing actions to improve coordination of care and awareness of rare diseases amongst all health care professionals, including those who work in emergency settings.