Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when the National Institute for Health and Care Excellence next plans to review the entry criteria for its highly specialised technologies programme for the evaluation medicines to treat very rare diseases.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence plans to review the criteria for determining whether a medicine should be routed to its highly specialised technologies programme later this year.
Mentions:
1: Andrew Stephenson (Con - Pendle) type 1, to the newborn blood spot screening programme in England.Hereditary tyrosinemia type 1 is a rare - Speech Link
May. 24 2024
Source Page: Next phase of work to reduce metal mine pollution due to startFound: It will also bring a boost to biodiversity by the creation of rare calaminarian grassland habitats –
Found: parliamentary session that the Group held its initial meeting, where the office bearers were elected and
Asked by: Henry Smith (Conservative - Crawley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to help improve genomics testing for bowel cancer patients.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
A National Health Service testing programme is helping to diagnose thousands of people with a genetic condition, Lynch Syndrome, that increases the chance of developing certain cancers including bowel cancer. The national programme ensures all people diagnosed with bowel cancer are offered genomic testing, with a diagnosis for Lynch Syndrome not only helping to guide more personalised cancer treatment but enabling their families and relatives to be offered testing too. Relatives who receive a diagnosis of Lynch Syndrome can be referred to genetic services to discuss regular testing options to help catch any cancers as early as possible, as well as to consider preventive options such as taking aspirin or undergoing risk-reducing surgery.
Genomic testing in the NHS in England is provided through the NHS Genomic Medicine Service (GMS) and delivered by a national genomic testing network of seven NHS Genomic Laboratory Hubs (GLHs). The NHS GLHs deliver testing as directed by the National Genomic Test Directory (NGTD) which outlines the full range of genomic testing offered by the NHS in England including tests for 3,200 rare diseases and over 200 cancer clinical indications, including both whole genome sequencing (WGS) and non-WGS testing. The NGTD sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested and the method that should be used, including testing for bowel cancer patients.
The NHS GMS cancer genomic testing strategy has facilitated a move to a consolidated laboratory network through the seven NHS GLHs delivering more extensive panel testing using cutting edge high throughput Next Generation Sequencing (NGS) technology. For patients, including those with bowel cancer, this technology enables testing for a larger number of genetic variations to give a more precise diagnosis, identify biomarkers to target treatment and opportunities to access innovative medicines, and can support enrolment into molecularly stratified clinical trials.
Testing is available for all eligible patients across the whole of England. Individuals should discuss with their healthcare professional (for example, their general practitioner or other healthcare professional if they are already being seen in a relevant service) whether genomic testing is appropriate for them. Their healthcare professional will then make a decision whether to refer the individual either directly or via an NHS clinical genomics service or other relevant clinical speciality for genomic testing following clinical review of their and their family’s medical history if known, and the relevant genomic testing eligibility criteria.
The 17 NHS Clinical Genomic Services (NHS CGSs), 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. As part of the NHS CGS, the patient and their family will access diagnosis, and management relevant to their particular condition, but also receive support and guidance so that they are able to understand their condition, its implications, and their options in relation to reproduction, screening, prevention and clinical management.
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government whether they intend to have any discussions with the National Institute for Health and Care Excellence about routinely taking into consideration the impact on the physical and mental health of the person with a rare condition and their wider family.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) develops its guidance independently, in line with its established methods and processes, which have been developed through extensive engagement with interested parties. In developing its guidance, the NICE takes into account all physical and mental health-related costs and benefits including, where relevant, the health-related benefits to carers and the wider family.
Fund routine genetic testing in pregnancy
- Final Signatures: 3,830
I would like the Government to fund routine genetic testing for all expectant mothers. I recently lost my son, Oscar, to a rare genetic disorder. If genetic testing during pregnancy had been offered, there potentially could have been more options/ chances to save Oscar.
Found: A simple blood test given to pregnant women would be able to identify some genetic disorders the woman
Asked by: Beth Winter (Labour - Cynon Valley)
Question to the Ministry of Justice:
To ask the Secretary of State for Justice, when the next inspection by HM Inspectorate of Prisons of HMP Parc will occur.
Answered by Edward Argar - Minister of State (Ministry of Justice)
His Majesty’s Inspectorate of Prisons (HMIP) is operationally independent of Government and is responsible for deciding its own inspection programme. Therefore, the Government is not normally notified of inspections in advance, except in rare cases where the Chief Inspector believes a notice period might specifically help promote improvement at a particular institution.
Under HMIP's framework each prison should be inspected at least once every five years and in practice most prisons can expect to be inspected every two to three years. HMI Prisons last inspected HMP Parc in June 2022.
Asked by: Lord Wigley (Plaid Cymru - Life peer)
Question to the Wales Office:
To ask His Majesty's Government what discussions they have had in the past 12 months with Welsh Ministers on issues relating to the trawling of the sea bed for rare minerals within territorial waters of the Welsh coast.
Answered by Lord Harlech - Lord in Waiting (HM Household) (Whip)
UK Government Ministers have regular discussions with Welsh Government Ministers on a wide range of issues. In addition, the Department for Environment, Food and Rural Affairs engages regularly at official level with the Welsh Government on areas of shared interest, including marine licensing.
The licensing regime for mineral extraction from the seabed within Welsh waters is a devolved matter for the Welsh Government, and therefore the responsibility of Natural Resources Wales (NRW).
Asked by: Baroness Hayman of Ullock (Labour - Life peer)
Question to the Department for Energy Security & Net Zero:
To ask His Majesty's Government what assessment they have made of claims that Drax Power Station is burning wood from rare forests in Canada; and whether such behaviour is consistent with the terms of the environmental subsidies provided to it.
Answered by Lord Callanan - Parliamentary Under Secretary of State (Department for Energy Security and Net Zero)
The Government only supports sustainable biomass and generators only receive subsidies for biomass that complies with strict sustainability criteria. We take reports of non-compliance very seriously and regularly engage with our regulator, Ofgem, to ensure that our strict sustainability criteria are being adhered to.