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.
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, how many appraisals for medicines to treat very rare diseases were started through the National Institute for Health and Care Excellence highly specialised technology programme in each financial year since 2018-19.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The following table from the National Institute for Health and Care Excellence (NICE) shows the number of highly specialised technology evaluations that started in each year since 2018/2019:
Year | Invitations To Participate |
2018/19 | 4 |
2019/20 | 2 |
2020/21 | 3 |
2021/22 | 7 |
2022/23 | 8 |
2023/24 | 4 |
Total | 28 |
Note: The term started has been defined as when the NICE sent the invitation to participate.
Asked by: Geoffrey Cox (Conservative - Torridge and West Devon)
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 (a) promote better awareness within the NHS of the symptoms of Lyme disease and (b) speed up (i) testing and (ii) analysis of test results for Lyme disease.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The National Institute for Health and Care Excellence’s (NICE) Clinical Knowledge Summaries (CKS) are specifically aimed at general practices (GPs), and cover the availability of testing services. The entomology group in the UK Health Security Agency (UKHSA) also has a tick awareness scheme, which sends out information on avoiding tick bites in a spring campaign, and supports local authorities in areas with a high prevalence of Lyme disease. Further information on Lyme disease, access to testing, and the NICE’s CKS’ is available respectively at the links below:
https://www.gov.uk/government/collections/lyme-disease-guidance-data-and-analysis
https://www.nice.org.uk/guidance/ng95
https://cks.nice.org.uk/topics/lyme-disease/management/management/
All confirmatory testing in England is performed by the Rare and Imported Pathogens Laboratory (RIPL). Delays may occur in the referring laboratory when submitting the sample, during testing at the RIPL, or when accessing the results, which are sent back electronically, before being passed onto GPs. Only the RIPL is within the UKHSA’s control, and the RIPL is planning to introduce new technology to speed up tests for neuroborreliosis.
National data analysis is released through the Fingertips system, which is regularly updated. The annual number of cases of Lyme disease varies from year to year, depending on weather conditions in the Lyme season, the effects of weather and human activities on animals that harbor the disease, and the tick population. Further information on the Fingertips system is available at the following link:
https://fingertips.phe.org.uk/profile/health-protection/data
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what provisions are in place to support the families and caregivers of individuals with rare diseases.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Each year since 2021, we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan. In this plan we recognised that significant challenges exist with access to mental health and psychological support for people living with rare conditions, as well as their families and carers. During this year we have taken steps to further understand the challenges faced through a workshop, and have begun to address these needs by developing resources to better equip the workforce to provide support.
The enormous contribution of unpaid carers, including those caring for individuals with rare diseases, is reflected throughout the Next Steps to Put People at the Heart of Care, published in April 2023. Furthermore, the Better Care Fund in 2023/24 includes £327 million for carers support, including short breaks and respite services for carers. This also funds advice and support to carers, and a small number of additional local authority duties. The Accelerating Reform Fund also provides support for unpaid carers. The Government is developing a new survey of unpaid carers which will capture the wide range of experiences, circumstances, and needs of unpaid carers across England. Through the National Institute for Health and Care Research, an evaluation of the support provided to unpaid carers funded through the Better Care Fund has been commissioned, which will improve the understanding of what support works best for unpaid carers.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure equitable access to specialised care and support for patients with rare diseases across England.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework, providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities, collaboratively developed with the rare disease community, which are: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs. The principles of the UK Rare Diseases Framework commit the four nations to ensuring that any impacts on health inequalities are considered when developing action plans.
Each year since 2021 we have published an England Rare Diseases Action Plan, with health equity highlighted as a focus area. On 29 February 2024 we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year and previous year’s action plans, that relate to equitable access to specialised care and support for patients with rare diseases.
Asked by: Gareth Johnson (Conservative - Dartford)
Question to the Department for Levelling Up, Housing & Communities:
To ask the Secretary of State for Levelling Up, Housing and Communities, what steps his Department is taking to support leaseholders living in buildings below 11 metres in height with fire remediation costs.
Answered by Lee Rowley - Minister of State (Minister for Housing)
The responsibility for the costs of fixing historical building safety defects should rest with building owners. They should not pass these costs on to leaseholders but should seek to recover costs from those who were responsible for building unsafe homes.
We have undertaken extensive work over the last two years to review buildings under 11 metres which have been reported to us as having potential building safety issues. Almost all have proven not to need any intervention following detailed review.
In rare cases where remediation work is required in buildings under 11 metres, the Government has retrospectively extended the limitation period under Section 1 of the Defective Premises Act 1972 enabling legal action against developers and contractors where works completed in the last 30 years made a dwelling not “fit for habitation”.
These rights include:
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 Hollins (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what progress they have made, if any, in reaching a settlement in cases of individuals who have developed (1) blood clots, and (2) life-changing conditions, such as transverse myelitis, after receiving the COVID-19 AstraZeneca vaccine; and what assessment they have made of the level of payment being awarded under the Vaccine Damage Payment scheme.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government knows there are some extremely rare cases where individuals have sadly experienced harm following vaccination against COVID-19, and recognises how difficult this is for those individuals and their families. It would not be appropriate to comment on individual cases, including where there may be ongoing litigation that may involve the Government.
As part of business-as-usual work, the Government reviews the payment amount of the Vaccine Damage Payment Scheme (VDPS), alongside all routine policy on a regular basis. There are no plans at this time to change the level of payment awarded under the VDPS.
Asked by: Lord Watts (Labour - Life peer)
Question
To ask His Majesty's Government what is their policy on civil servants giving evidence to House of Lords committees, and under what circumstances a request for such evidence may be declined.
Answered by Lord True - Leader of the House of Lords and Lord Privy Seal
The Government, including the Civil Service, is committed to being as accommodating as possible when requests are made by Select Committees. The Cabinet Office has dedicated guidance for Civil Servants about giving evidence to House of Lords Select Committees. Officials will always carefully consider requests to give evidence. When they do accept such invitations, they require Ministerial agreement and are there to represent the Minister's views.
In the event that a Select Committee requests a named civil servant from a department and the department feels that they are not the most appropriate person to represent the Minister, the department has the right to suggest an alternative to the Committee. There may be rare examples where the Department and Ministers feel an official is unable to attend, but the guidance is clear that if a Department considers it is unable to meet any requests from the Select Committee, they should inform the Committee as soon as practicably possible and set out the reasons why.
As Leader of the House of Lords, I have made it clear to my Ministerial Colleagues, that Ministers in both Houses should make every effort to facilitate Select Committee requests, including evidence session attendance.
Asked by: Drew Hendry (Scottish National Party - Inverness, Nairn, Badenoch and Strathspey)
Question to the Home Office:
To ask the Secretary of State for the Home Department, what assessment his Department has made of the impact of the lack of an appeals process for Visitor Visa's on tourism numbers coming to the UK.
Answered by Tom Pursglove - Minister of State (Minister for Legal Migration and Delivery)
The department has not conducted an assessment of tourism numbers and appeals. When appeals for family visitors were abolished in 2013, the assessment was that the quicker and more cost-effective remedy for those refused was a fresh application, with judicial review available where necessary. These options are open to tourists, who therefore have no reason to be deterred by the lack of an appeal. In 2023, the number of visitor visas issued was up by 40% on 2022.
In 2014, the immigration appeals system was reserved for cases raising issues of fundamental rights, and in those rare cases where a visit engages human rights an appeal is still available.