Asked by: Lord Botham (Crossbench - 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 of ineligibility to receive cerliponase alfa for treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) on children born after January 2026; and what steps they are taking to ensure equitable access to treatment for all future patients who are diagnosed with CLN2.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In the absence of treatment with cerliponase alfa, clinical management of patients with neuronal ceroid lipofuscinosis type 2 (CLN2) focuses on symptom control, monitoring and preventing complications, and palliative care. The aim is to maintain function for as long as possible and to improve quality of life. Following the next National Institute for Health and Care Excellence Appraisal Committee meeting in July, the National Institute for Health and Care Excellence and NHS England will continue to try to reach an agreement with the manufacturer, based on the committee's preferred assumptions around modelling, that will provide access to cerliponase alfa for all future patients.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what estimate they have made of the number of children born annually in the UK with neuronal ceroid lipofuscinosis type 2 after January 2026, and what alternative treatments will be available should they be ineligible for treatment with Brineura.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is currently updating its guidance on the use of cerliponase alfa (Brineura) for the treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) and has not yet published final guidance. NICE published its draft guidance for consultation in May 2025 and was unfortunately unable to recommend cerliponase alfa for routine use when taking into account all the evidence of costs and benefits, including real world evidence collected during the managed access period. We are, however, pleased that NICE and NHS England have been able to reach an agreement with the manufacturer of cerliponase alfa that ensures continued access to treatment for all patients who started on treatment before December 2025.
Officials in the Department have been in regular contact with NICE and NHS England about this appraisal. Following the next NICE Appraisal Committee meeting in July, NICE and NHS England will continue to try to reach an agreement with the manufacturer based on the committee's preferred assumptions around modelling that will provide access to cerliponase alfa for all future patients.
It is estimated that in the UK, approximately three to six children are diagnosed with CLN2 each year. In the absence of treatment with cerliponase alfa, clinical management options focus on symptom control, monitoring and preventing complications, and palliative care. Management aims to maintain function as long as possible and to improve quality of life.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what discussions they have had with BioMarin and the National Institute for Health and Care Excellence regarding the long-term sustainability of access to Brineura for children with neuronal ceroid lipofuscinosis type 2 beyond the expiration of the current managed access agreement.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is currently updating its guidance on the use of cerliponase alfa (Brineura) for the treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) and has not yet published final guidance. NICE published its draft guidance for consultation in May 2025 and was unfortunately unable to recommend cerliponase alfa for routine use when taking into account all the evidence of costs and benefits, including real world evidence collected during the managed access period. We are, however, pleased that NICE and NHS England have been able to reach an agreement with the manufacturer of cerliponase alfa that ensures continued access to treatment for all patients who started on treatment before December 2025.
Officials in the Department have been in regular contact with NICE and NHS England about this appraisal. Following the next NICE Appraisal Committee meeting in July, NICE and NHS England will continue to try to reach an agreement with the manufacturer based on the committee's preferred assumptions around modelling that will provide access to cerliponase alfa for all future patients.
It is estimated that in the UK, approximately three to six children are diagnosed with CLN2 each year. In the absence of treatment with cerliponase alfa, clinical management options focus on symptom control, monitoring and preventing complications, and palliative care. Management aims to maintain function as long as possible and to improve quality of life.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what equality impact assessment they have carried out in regard to the decision to end access to Brineura for patients diagnosed with neuronal ceroid lipofuscinosis type 2 after January 2026.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department has not undertaken any equality impact assessment.
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. Equality impact assessments are not undertaken for managed access agreements, but considerations of equality and health inequalities are integral to NICE’s guidance development process.
Managed access gives people faster access to promising new treatments which might otherwise not be recommended, because of uncertainties about their clinical or cost effectiveness.
The managed access agreement (MAA) for cerliponase alfa (Brineura) was put in place to allow eligible patients to be treated, while additional evidence was collected to address significant uncertainties identified by NICE’s independent committee. Without this agreement, the treatment could not be made available at all.
Patients who started treatment during the MAA will continue to be funded. However, if the committee ultimately concludes that the treatment is not a cost-effective use of NHS resources, it cannot be recommended for routine commissioning and new patients would not be eligible for NHS-funded access.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government why provision of cerliponase alfa to children with neuronal ceroid lipofuscinosis type 2 will be restricted from January 2026, and what engagement they have had with NHS England, the National Institute for Health and Care Excellence, and BioMarin regarding future access and funding arrangements.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is currently updating its guidance on the use of cerliponase alfa (Brineura) for the treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) and has not yet published final guidance. NICE published its draft guidance for consultation in May 2025 and was unfortunately unable to recommend cerliponase alfa for routine use when taking into account all the evidence of costs and benefits, including real world evidence collected during the managed access period. We are, however, pleased that NICE and NHS England have been able to reach an agreement with the manufacturer of cerliponase alfa that ensures continued access to treatment for all patients who started on treatment before December 2025.
Officials in the Department have been in regular contact with NICE and NHS England about this appraisal. Following the next NICE Appraisal Committee meeting in July, NICE and NHS England will continue to try to reach an agreement with the manufacturer based on the committee's preferred assumptions around modelling that will provide access to cerliponase alfa for all future patients.
It is estimated that in the UK, approximately three to six children are diagnosed with CLN2 each year. In the absence of treatment with cerliponase alfa, clinical management options focus on symptom control, monitoring and preventing complications, and palliative care. Management aims to maintain function as long as possible and to improve quality of life.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government whether they plan to revisit the Managed Access Agreement for Brineura for treating neuronal ceroid lipofuscinosis type 2 to ensure that children born after January 2026 are not excluded from the treatment.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is currently updating its guidance on the use of cerliponase alfa (Brineura) for the treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) and has not yet published final guidance. NICE published its draft guidance for consultation in May 2025 and was unfortunately unable to recommend cerliponase alfa for routine use when taking into account all the evidence of costs and benefits, including real world evidence collected during the managed access period. We are, however, pleased that NICE and NHS England have been able to reach an agreement with the manufacturer of cerliponase alfa that ensures continued access to treatment for all patients who started on treatment before December 2025.
Officials in the Department have been in regular contact with NICE and NHS England about this appraisal. Following the next NICE Appraisal Committee meeting in July, NICE and NHS England will continue to try to reach an agreement with the manufacturer based on the committee's preferred assumptions around modelling that will provide access to cerliponase alfa for all future patients.
It is estimated that in the UK, approximately three to six children are diagnosed with CLN2 each year. In the absence of treatment with cerliponase alfa, clinical management options focus on symptom control, monitoring and preventing complications, and palliative care. Management aims to maintain function as long as possible and to improve quality of life.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the HM Treasury:
To ask His Majesty's Government what consideration they have given to differentiating between independent schools with (1) fewer than 200 pupils, and (2) more than 200 pupils, with regard to the imposition of VAT.
Answered by Lord Livermore - Financial Secretary (HM Treasury)
Ending tax breaks for private schools will secure additional funding to help the government deliver its commitments to the 94% of children who attend state schools.
The Government has published a detailed response to the consultation conducted between July and September. The Government carefully considered over 17,000 responses from a range of stakeholders including schools, school associations, and parents. This was published online and can be found on gov.uk.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the HM Treasury:
To ask His Majesty's Government what consideration they have given to phasing in the introduction of VAT for independent schools.
Answered by Lord Livermore - Financial Secretary (HM Treasury)
Ending tax breaks for private schools will secure additional funding to help the government deliver its commitments to the 94% of children who attend state schools.
As a result of the January start date, the VAT policy is forecast to raise £460 million in 2024/25.
The government will use this funding to help deliver its commitments relating to education and young people, where the government has announced at Budget a £2.3 billion increase to the core schools budget for financial year 2025/26, increasing per pupil funding in real terms.
Since the announcement on 29 July, HMRC has taken action to support private schools through the change: providing detailed guidance; and allocating additional resource to process VAT registration applications. HMRC continues to engage with schools and the organisations that represent them.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the HM Treasury:
To ask His Majesty's Government what consideration they have given to making independent schools eligible for transitional relief for business rates.
Answered by Lord Livermore - Financial Secretary (HM Treasury)
Ending tax breaks on VAT and business rates for private schools will secure additional funding to help deliver the government’s commitments relating to education and young people. Where a school in England has charitable status, the government will remove their eligibility to business rates charitable rates relief from April 2025.
Transitional relief limits how much ratepayers’ bills can change each year as a result of changes to a property's rateable value and changes to the multiplier at a revaluation. As such, support provided through transitional relief is unaffected by changes in other business rates reliefs and their eligibility.
Asked by: Lord Botham (Crossbench - Life peer)
Question to the Department for Digital, Culture, Media & Sport:
To ask His Majesty's Government how many people aged (1) 20–30, (2) 31–40, (3) 41–50, (4) 51–60, (5) 61–75, and (6) 76 and over, were prosecuted in (a) 2021, (b) 2022, and (c) 2023, for non-payment of their TV licences.
Answered by Lord Parkinson of Whitley Bay - Shadow Minister (Culture, Media and Sport)
The requirement to hold, and pay for, a television licence is set out in the Communications Act 2003 and the Communications (Television Licensing) Regulations 2004. Under the Communications Act 2003, the BBC is responsible for the collection and enforcement of the TV licensing system.
The Ministry of Justice currently publishes the number of prosecutions, convictions, and sentencing outcomes for the non-payment of TV licence fees annually as part of its quarterly criminal justice statistics, which can be viewed here: https://www.gov.uk/government/collections/criminal-justice-statistics-quarterly
The figures are not broken down in the exact age groups requested. A breakdown of people proceeded against for TV licence evasion in England and Wales broken down by the age groups provided in the Ministry of Justice’s figures is below:
21-29
2021 - 9,767
2022 - 7,498
2023 - 5,705
30-39
2021 - 18,635
2022 - 16,273
2023 - 13,139
40-49
2021 - 12,804
2022 - 11,712
2023 - 9,790
50-59
2021 - 8,337
2022 - 8,050
2023 - 6,927
60-69
2021 - 3,042
2022 - 3,071
2023 - 2,931
70+
2021 - 269
2022 - 279
2023 - 266