Question follow-through · 24991

Rare Diseases: Medical Treatments

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on ensuring that patient access to treatment for very rare diseases is not delayed in circumstances where there is uncertainty on the incidence and

answeredDepartment of Health and Social Care

About this written question

A written question asks a government minister for information in writing. Parliament publishes the question and any answer.

Answering body
Department of Health and Social Care
Tabled
20 Jan 2025
Target answer date
23 Jan 2025
Answer
23 Jan 2025 · 3 calendar days after tabling

Elapsed calendar days describe the record timeline, not whether Parliament considers an answer on time.

More questions by this MP on Health and care

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Votes on this topic

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Recorded timeline

  1. 20 Jan 2025

    Question tabled

    To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on ensuring that patient access to treatment for very rare diseases is not delayed in circumstances where there is uncertainty on the incidence and

  2. 23 Jan 2025

    Target answer date

    Date supplied by the official written-questions record.

  3. 23 Jan 2025

    Answer published

    The Department has regular discussions with the National Institute for Health and Care Excellence (NICE) about a range of issues, including the criteria for routing topics to the Highly Specialised Technologies (HST) programme.Decisions on whether medicin...

Open official record

Official data retrieved 28 Sept 2026.

Later records

Possible follow-up questions

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Unreviewed candidateSame MP and department; topic relationship is unreviewed

Hospitals: Repairs and Maintenance

21 Jan 2025 · To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of centrally procuring scaffolding to prop up hospitals awaiting funding via the New Hospital Programme.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Givinostat

22 Jan 2025 · To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing access to givinostat.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Hospitals: Construction

28 Jan 2025 · To ask the Secretary of State for Health and Social Care, how much additional funding for maintenance at delayed schemes in the New Hospital Programme has been made available for each hospital in each year.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Post-mortems

28 Jan 2025 · To ask the Secretary of State for Health and Social Care, if he will take steps with Cabinet colleagues to help reduce the turnaround times for (a) hospital and (b) HM Coroner's Office post mortems in (i) neonatal and paediatric and (ii) other cases.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

NHS Foundation Trusts

28 Jan 2025 · To ask the Secretary of State for Health and Social Care, which health foundation trusts other than Devon are under NHS Oversight Framework Level 4.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Dental Services: Torbay

4 Feb 2025 · To ask the Secretary of State for Health and Social Care, what steps he is taking to increase the number of NHS dentists in Torbay constituency.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Independent Commission into Adult Social Care

7 Feb 2025 · To ask the Secretary of State for Health and Social Care, what the expected timeline is for Baroness Casey's Commission into Adult Social Care, including the dates for evidence submission.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Post-mortems: Children

21 Feb 2025 · To ask the Secretary of State for Health and Social Care, how many parents who have experienced the death of a child have waited more than three months to receive the final post-mortem report.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Health Services: Standards

6 Mar 2025 · To ask the Secretary of State for Health and Social Care, which Minister has oversight of the Getting It Right First Time programme.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Torbay and South Devon NHS Foundation Trust: Standards

6 Mar 2025 · To ask the Secretary of State for Health and Social Care, which services GIRFT have been reviewing as part of the healthcare system that impacts on Torbay and South Devon NHS Foundation Trust in the last two years.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Health Services

6 Mar 2025 · To ask the Secretary of State for Health and Social Care, what steps should be taken prior to a test for change on a healthcare offer.

Unreviewed candidateSame MP and department; topic relationship is unreviewed

Hospitals: Radio

12 Mar 2025 · To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help support hospital radio stations.