Parliamentary questions

Parliamentary Questions (PQs) are questions formally put forward by Parliamentarians to members of the Government.

PQs are a very useful way  getting insight into what the Government’s policy is on a particular issue or what action has been taken.

As PQs must be answered, they also help us  to raise awareness of an issue and to keep pressing for change.

Questions can be asked either orally or in writing, and an answer is expected in around a week in the House of Commons and two weeks in the House of Lords, though there is no formal rule guaranteeing these timeframes.

PQs are a vital piece of the political  toolkit for Brain Tumour Research, our campaigners and our supporters at Westminster.

Written Question

Alistair Strathern

Asked on: 23 April 2024

To ask the Secretary of State for Health and Social Care, whether NHS England plans to provide dendric cell therapy for glioma.

Answered by: Andrew Stephenson

Answered on: 29 April 2024

The National Institute for Health and Care Excellence (NICE) evaluates all new licensed medicines, including medicines for glioma, to determine whether they represent a clinically and cost-effective use of resources. The NICE aims to publish guidance on new medicines as close as possible to licensing. Any medicine for glioma, recommended in draft NICE guidance, will be eligible for funding through the Cancer Drugs Fund from the point a positive draft guidance is published, in line with the standard arrangements for cancer medicines.

On 24 April 2024, the NICE published draft guidance recommending a new treatment for glioma in children and young people that will be available to eligible patients once supply of the treatment is available.

There are currently no licensed dendritic cell therapies for glioma. A number of dendritic cell therapies are in development for the treatment of glioma, and any new licensed and NICE recommended treatments would be funded by NHS England, in line with NICE’s recommendations.

Written Question

Lord Hunt of Kings Heath

Asked on: 19 March 2024

To ask His Majesty's Government how much funding they have allocated for research into the (1) cause, and (2) treatment, of astrocytoma brain tumours in each of the past ten years; and to which organisations and projects and those funds were allocated.

Answered by: Lord Markham

Answered on: 27 March 2024

Research is crucial in tackling cancer, which is why the Department invests over £1 billion per year in health research through the National Institute for Health and Care Research (NIHR). NIHR research expenditure for all cancers was £121.8 million in 2022/23. The NIHR spends more on cancer than any other disease group.

The NIHR funds and supports health, public health and social care research that leads to improved outcomes for patients and the public and makes the health and social care system more efficient, effective, and safe. Research evidence is vital for improving treatments and outcomes for people, including those with astrocytoma brain tumours.

The following table shows NIHR-funded research into astrocytoma brain tumours since 2013/14:

Award Title	Contractor	Start Date	End Date	Status	Total Award Budget
Dabrafenib with trametinib for treating BRAF V600E mutation-positive glioma in children and young people aged 1 to 17 [ID5104]	The University of Sheffield	12/10/2023	12/03/2024	Active	£70,000
A randomized, double-blind, parallel group, placebo-controlled trial of metformin in tuberous sclerosis complex.	University Hospitals Bristol and Weston NHS Foundation Trust	1/8/2012	28/2/2017	Closed	£239,665
Grand total	-	-	-	-	£309,665

The NIHR funds research in response to proposals received from scientists rather than allocating funding to specific disease areas. The NIHR welcomes funding applications for research into any aspect of human health, including astrocytoma brain tumours. It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality.

It is worth noting that all applications that were fundable in open competition have been funded. The Department works closely with research funding partners such as Cancer Research UK and the Medical Research Council, who fund research into new scientific discoveries.

Written Question

Lord Hunt of Kings Heath

Asked on: 19 March 2024

To ask His Majesty's Government, following research from Cancer Research UK which found that brain, other central nervous system and intracranial tumours incidence rates have increased by almost two-fifths in the UK since the early 1990s, what steps they are taking to ensure that the funding spent on brain tumour research keeps pace with the increased incidence.

Answered by: Lord Markham

Answered on: 26 March 2024

Research is crucial in tackling cancer, which is why the Department invests over £1 billion per year in health research, through the National Institute for Health Research (NIHR). NIHR research expenditure for all cancers was £121.8 million in 2022/23, and the NIHR spends more on cancer than any other disease group.

The NIHR funds research in response to proposals received from scientists rather than allocating funding to specific disease areas. It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

In May 2018 the Government announced £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission (TJBCM) through the NIHR. Since the 2018 announcement, the NIHR has committed £11.3 million across 17 projects. It is worth noting that all applications that were fundable in open competition, have been funded.

There is still funding available from the original £40 million announced in 2018. We are committed to funding high-quality brain cancer research, and we expect to spend more as new research progresses.

Brain tumours are a difficult research area with a relatively small research community. To increase the quality, diversity, and number of brain cancer research proposals, the NIHR is working with the TJBCM and the research community to develop research capacity in the brain cancer community. The NIHR continues to encourage and welcome more funding applications for research into brain tumours.

Written Question

Lord Hunt of Kings Heath

Asked on: 6 March 2024

To ask His Majesty's Government what assessment they have made of international phase 3 clinical trials which suggest that Vorasidenib could offer a new treatment option for low-grade glioma; and whether they intend to make it available to brain tumour patients.

Answered by: Lord Markham

Answered on: 13 March 2024

If the manufacturer applies for a marketing authorisation in the United Kingdom, the Medicines and Healthcare products Regulatory Agency will consider clinical trial evidence in making a licensing decision. Subject to licensing, the National Institute for Health and Care Excellence will consider the clinical trial evidence, when making decisions on whether vorasidenib should be recommended for routine National Health Service funding.

Written Question

Sir Charles Walker

Asked on: 27 February 2024

To ask the Secretary of State for Health and Social Care, what assessment she has made of the adequacy of the level of NHS funding for brain tumour research compared to research into other cancers; and if she will provide the quantum of NHS research funding into brain tumours for each of the last five financial years

 Written Question 

Baroness Randerson

Asked on: 12 February 2024

To ask His Majesty's Government what assessment they have made of the recommendations of the APPG Report Brain Tumours–Pathway to a Cure, and in particular recommendation 6 with reference to paediatric cancer diffuse intrinsic pontine glioma.

Answered by: Lord Markham

Answered on: 15 February 2024

The Department welcomed the All-Party Parliamentary Group report and will continue to work through its recommendations with the Department of Science, Innovation and Technology, UK Research and Innovation, the Medical Research Council, and the National Institute for Health and Care Research (NIHR).

With regards to recommendation six, the NIHR welcomes funding applications for research into any aspect of human health, including childhood brain tumours and paediatric diffuse intrinsic pontine glioma. The usual practice of the NIHR is not to ring-fence funds for specific disease areas, as research proposals in all areas compete for the funding available. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

We rely on researchers to submit high-quality research proposals. Given the relatively small brain tumour clinical research community, we have been taking action to grow the field. The NIHR is working closely with the Tessa Jowell Brain Cancer Mission in hosting customised workshops for researchers, and training for clinicians, to grow capacity for brain cancer research, attract new researchers, develop the community, and support researchers to submit high-quality research funding proposals.

The NIHR is committed to the involvement, engagement and participation of children and young people in research, supporting researchers and funders, as well as empowering children and young people to lead their own journey with research.

The NIHR, together with the United Kingdom health departments, the Little Princess Trust and Cancer Research UK, jointly fund Experimental Cancer Medicine Centres (ECMCs) to support the most promising innovations into the cancer medicines of tomorrow. For 2023 to 2028, the NIHR is providing £21.6 million in funding for the ECMCs in England, the ECMC Paediatric Network, and the Network Programme Office. Additionally, the NIHR Clinical Research Network cancer portfolio has a dedicated children and young people’s cancer subspecialty, which has a subspecialty lead who promotes and supports research within their local National Health Service trusts.

The Department has also now set up the Children and Young People Cancer Taskforce to progress our mission to deliver world-leading cancer services. This dedicated work focusing on cancers affecting children and young people will explore research and innovation, which may include targeting research funding, reviewing children’s access to clinical trials, gaining greater access to data, and informing future therapies and treatments.

Written Question 

Caroline Lucas

Asked on: 7 February 2024

To ask the Secretary of State for Health and Social Care, what discussions she (a) has had and (b) plans to have with (i) brain tumour research charities and (ii) other organisations working to secure UK access to (A) Vorasidenib and (B) other new drugs for cancers of unmet need.

Answered on: Awaiting answer

Written Question

Lord Hunt of Kings Heath

Asked on: 6 February

To ask His Majesty's Government what steps they have taken to improve access to new drugs for brain tumour patients.

Answered by: Lord Markham 

Answered on: 13 February 2024

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR invests in the research delivery workforce, the facilities, and the capacity to support clinical trials into all disease areas, including brain tumours. The NIHR Clinical Research Facilities and Experimental Cancer Medicine Centres support the delivery of early phase trials, and the NIHR Clinical Research Network and Patient Recruitment Centres support delivery and participation in later phase clinical trials.

The National Institute for Health and Care Excellence (NICE) makes recommendations on whether all new medicines, including for brain tumours, should be routinely funded by the National Health Service based on an assessment of their costs and benefits. NICE is able to recommend medicines for use through the Cancer Drugs Fund, where there is too much uncertainty for NICE to recommend routine use. NICE works closely with the Medicines and Healthcare Products Regulatory Agency to ensure that its appraisal timelines are aligned with the regulatory process. NICE is currently evaluating a number of potential new medicines for brain tumours.

Written Question

Sir John Hayes

Asked on: 6 February 2024

To ask the Secretary of State for Health and Social Care, if she will increase the share of overall cancer research funding allocated to brain tumour research.

Answered by: Andrew Stephenson

Answered on: 13 February 2024

The Department invests over £1 billion per year in health research through the National Institute for Health Research (NIHR). NIHR research expenditure for all cancers was £121.8 million in 2022/23.

The NIHR funds research in response to proposals received from scientists, rather than allocating funding to specific disease areas. It is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

Because of its importance, in May 2018 the Government announced £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission (TJBCM) through the NIHR. Since the 2018 announcement, the NIHR has committed £11.3 million across 16 projects. All applications that were considered to be of fundable quality, by scientific peer reviewers, have been funded. To increase the quality, diversity and number of brain cancer research proposals the NIHR is working with the TJBCM and the research community to develop research capacity in the brain cancer community.

There is still funding available from the original £40 million announced in 2018. We are committed to funding high-quality brain cancer research, and we expect to spend more as new research progresses.

Written Question

Lord Hunt of Kings Heath

Asked on: 5 February 2024

To ask His Majesty's Government what assessment they have made of the impact of changes to the National Institute for Health and Care Excellence's Methods and Process on patients with rare and ultra-rare diseases.

Answered by: Lord Markham

Answered on: 9 February 2024

A number of the changes made by the National Institute for Health and Care Excellence (NICE) to its methods and processes for health technology evaluation are expected to benefit medicines for rare diseases, including the introduction of a severity modifier and greater flexibility in responding to uncertainty. NICE has committed to assessing the impact of the changes on patients with rare diseases.

Due to length of the medicine’s evaluation process and number of rare disease topics using older methods or processes, the analysis of the impact of changes will take some time to assess. Data is being collected which will allow, for example, the percentage of positive NICE recommendations made following old methods and processes compared with new methods and processes for rare diseases, to be assessed. NICE will be in a position to publish the impact of the 2022 manual changes in a report by the end of 2024.

Written Question

Ian Byrne

Asked on: 19 December 2023

To ask the Secretary of State for Health and Social Care, what estimate she has made on the proportion of funding for clinical brain tumour research spent in each region of the UK in the latest period for which data is available.

Answered by: Andrew Stephenson

Answered on: 10 January 2024

The Department funds research through the National Institute for Health and Care Research (NIHR). NIHR programme spend on brain tumour research for the financial year 2022/23 was £2,028,646, distributed regionally to research organisations as set out in Table 1. It should be noted that NIHR programme funding is typically awarded to a lead researcher at a research organisation who then coordinates the delivery of the research study at a national level as required.

The NIHR also devotes significant resources to supporting patients, the public and health and care organisations across England to participate in high-quality research, thereby advancing knowledge and improving care. However, NIHR does not hold information by region on the delivery of individual research studies.

Table 1: Region of lead institution to which NIHR research programme awards were made

Region	Spend 22_23
Merseyside	23.4%
Greater London	18.0%
Cambridgeshire	12.1%
Oxfordshire	10.8%
South Yorkshire	9.8%
West Yorkshire	8.9%
Midlothian	8.1%
Nottinghamshire	4.4%
West Midland	2.2%
Somerset	1.4%
North Yorkshire	1.0%
Total	100.0%

 

Written Question

Ian Byrne

Asked on: 19 December 2023

To ask the Secretary of State for Health and Social Care, what estimate her Department has made of the number of Tessa Jowell Brain Cancer Mission customised workshops for researchers that have taken place as of 19 December 2023.

Answered by: Andrew Stephenson

Answered by: 10 January 2024

In 2023, the Tessa Jowell Brain Cancer Mission (TJBCM) hosted an essential research skills workshop series specifically designed for Nurses and Allied Health Professionals, in line with National Health Service ambitions to deliver a research-active clinical workforce. Workshops covered research proposal writing, study design and design appraisal, PPI, statistical methodologies, and research dissemination. Participants also benefited from expert-led consultations to receive tailored support for individual research. These five workshops and consultations took place between October and December 2023.

The Mission is further collaborating with The Brain Tumour Charity and researchers to advise and support any allied health professional seeking assistance in designing a robust study and submitting a high-quality research proposal.

The TJBCM held its first Brain Tumour Research Novel Therapeutics Accelerator Meeting, where it brought together a panel of world class experts to review three early-stage therapeutics and applications for brain cancer. The application deadline for interested applicants will close in January 2024.

The National Institute for Health and Care Research continues to work with the TJBCM and the research community to develop new workshops to further foster and develop research capacity in the brain cancer community to support an increase in quality, quantity, and diversity in brain cancer research in the United Kingdom. The aim is to deliver new workshops in the second half of 2024.

Written Question

Baroness Randerson 

Asked on: 7 November 2023 

To ask His Majesty's Government how much funding they have allocated for research into the treatment of Diffuse Intrinsic Pontine Glioma brain tumours in children in each of the last 10 years; and to which organisations were those funds allocated. 

To ask His Majesty's Government what collaborative research they are currently funding in partnership with other countries into childhood brain tumours, including Diffuse Intrinsic Pontine Glioma; and whether this includes funding for access to clinical trials. 

Answered by: Lord Markham  

Answered on: 13 October 2023 

The following table shows eight research studies around Diffuse Intrinsic Pontine Glioma, funded by research funding partners in the charity and public sectors since 2013 which have been supported by the National Institute for Health and Care Research (NIHR): 

Written Question

John McDonnell 

Asked on: 23 October 2023 

To ask the Secretary of State for Health and Social Care, with reference to the APPG on Brain Tumours' report entitled Pathway to A Cure, whether his Department plans to implement a joint strategy for brain tumour research with the Department for Science, Innovation and Technology; and if he will make a statement. 

Answered by: Will Quince 

Answered on: 25 October 2023 

The Department welcomes the All-Party Parliamentary Group report, recommendations of which continue to be worked through with the Department of Science, Innovation and Technology, UK Research and Innovation and the Medical Research Council (MRC), and with the National Institute for Health and Care Research (NIHR). 

The report recommended action by the research funding agencies on coordinating activities and making funding available. We are taking steps to ensure that funders work closely together to coordinate work along the translational pathway, from the discovery and early translational science typically supported by the MRC, feeding through to the applied health and care research funded by the NIHR. 

It is not usual practice to ring-fence funds for particular topics or conditions. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. The level of research spend in a particular area, is driven by factors including scientific potential and the number and scale of successful funding applications. 

Written Question

John McDonnell 

Asked on: 23 October 2023 

To ask the Secretary of State for Health and Social Care, with reference to the APPG on Brain Tumours' report entitled Pathway to A Cure, whether his Department has taken steps to implement that report's recommendations on engaging healthcare professionals with research. 

Answered by: Will Quince 

Answered on: 25 October 2023 

The Department welcomes the All-Party Parliamentary Group (APPG) report, recommendations of which continue to be worked through with the Department of Science, Innovation and Technology, UK Research and Innovation and the Medical Research Council (MRC), and with the National Institute for Health and Care Research (NIHR). 

In February 2023 the APPG report recommended that NIHR and UKRI should build research capacity, encouraging and retaining talent through fellowships and research incentives. In July 2023, NIHR jointly funded with the Tessa Jowell Brain Cancer Mission (TJBCM), the first two TJBCM Neuro-Oncology Fellowships, a new Fellowship Programme to support high quality training in neuro-oncology clinical practice and research to ensure clinicians are equipped with the relevant research skills needed to lead neuro-oncology trials that change practice. 

Other capacity-building initiatives underway include: the designation of 28 TJBCM adult Centres of Excellence within the National Health Service, creating a world-class network of brain tumour treatment and research centres to provide the best care and share best practice; the Tessa Jowell Academy Programme, a free national learning and networking digital platform for NHS brain tumour professionals to share excellence in research, treatment and care; and the TJBCM Brain Tumour Research Novel Therapeutics Accelerator programme, to review and provide guidance on the translation and development of novel treatments, guided by a multidisciplinary international group of experts. 

The NIHR is continuing to work with the TJBCM to develop further capacity-building initiatives. 

Written Question

Anum Qaisar 

Asked on: 17 October 2023 

To ask the Secretary of State for Health and Social Care, how much funding the Government has made available for research into paediatric brain tumours in each of the last five years. 

Answered by: Will Quince 

Answered on: 20 October 2023 

The Department invests in health research through the National Institute for Health and Care Research (NIHR). NIHR invests in research, clinical expertise, specialist facilities, workforce, and support services across a range of clinical areas. NIHR expenditure on cancer research was over £101 million in 2021/22. 

The Government is committed to funding high-quality brain cancer research. In May 2018 the Government announced £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission through the NIHR. This includes research into paediatric brain tumours. 

The £40 million funding will remain available; if we can spend more on the best quality science, we will do. The level of funding for brain tumour research depends on funding applications received. It is worth noting that all applications to NIHR that have been assessed as “fundable” in open competition have been funded and this will continue. 

Written Question

Caroline Ansell 

Asked on: 5 September 2023 

To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to encourage clinical researchers to specialise in brain tumour research; and if he will make a statement. 

Answered by: Will Quince 

Answered on: 13 September 2023 

Brain tumour research remains a challenging scientific area, with a relatively small research community. We are working closely with the Tessa Jowell Brain Cancer Mission (TJBCM) in hosting customised workshops for researchers, and training for clinicians. These actions will grow capacity for brain cancer research, attracting new researchers, developing the community, and supporting researchers to submit high quality research funding proposals. 

The TJBCM recently announced two appointments to the inaugural Tessa Jowell Fellowship programme. These 12-month fellowships will support high quality training in neuro-oncology clinical practice and research, to ensure clinicians are equipped with the relevant research skills needed to lead neuro-oncology trials that change practice. 

Additionally, the TJBCM have designated 28 adult Tessa Jowell Centres of Excellence within the National Health Service, which has created a world-class network of brain tumour treatment and research centres to provide the best care and share best practice. 

The National Institute for Health and Care Research (NIHR) welcomes funding applications for research into any aspect of human health, including research into brain tumours. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. 

 Written Question

Caroline Ansell 

Asked on: 5 September 2023 

To ask the Secretary of State for Health and Social Care, if he will make an assessment of the effectiveness of his Department's processes for allocating funding to the highest quality clinical trials for brain tumour research; and if he will make a statement. 

Answered by: Will Quince 

Answered on: 13 September 2023 

The Department invests in health research through the National Institute for Health and Care Research (NIHR). NIHR invests in research, clinical expertise, specialist facilities, workforce and support services across a range of clinical areas. NIHR expenditure on cancer research was £101.2 million in 2021/22. 

The Government is committed to funding high-quality brain cancer research. The May 2018 Government announcement of £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission remains available and if we can spend more on the best quality science we will do. 

We welcome more high-quality applications for brain tumour research funding. Applications are subject to peer review and judged in open competition. The NIHR continues to follow its normal high-quality processes in making funding recommendations to the Department. It is worth noting that all applications that were fundable in open competition have been funded. 

Written Question

Caroline Ansell 

Asked on: 5 September 2023 

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support researchers to access Government funding for brain tumour research; and if he will make a statement. 

Answered by: Will Quince 

Answered on: 13 September 2023 

Brain tumour research remains a challenging scientific area, with a relatively small research community. We are working closely with the Tessa Jowell Brain Cancer Mission (TJBCM) in hosting customised workshops for researchers, and training for clinicians. These actions will grow capacity for brain cancer research, attracting new researchers, developing the community, and supporting researchers to submit high quality research funding proposals. 

The TJBCM recently announced two appointments to the inaugural Tessa Jowell Fellowship programme. These 12-month fellowships will support high quality training in neuro-oncology clinical practice and research, to ensure clinicians are equipped with the relevant research skills needed to lead neuro-oncology trials that change practice. 

Additionally, the TJBCM have designated 28 adult Tessa Jowell Centres of Excellence within the National Health Service, which has created a world-class network of brain tumour treatment and research centres to provide the best care and share best practice. 

The National Institute for Health and Care Research (NIHR) welcomes funding applications for research into any aspect of human health, including research into brain tumours. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. 

Written Question

Lee Anderson 

Asked on: 5 September 2023 

To ask the Secretary of State for Health and Social Care, whether his Department plans to increase funding for the research and development of treatments for diffuse intrinsic pontine glioma. 

Answered by: Will Quince 

Answered on: 12 September 2023 

The Department invests in health research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including diffuse intrinsic pontine glioma (DIPG). 

DIPG is a difficult research area with a relatively small research community, and we are relying on researchers to submit high-quality research proposals. In May 2018 the Government announced £40 million for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. The Government is committed to funding high-quality brain cancer research, and we expect to spend more as new research progresses. The £40 million funding remains available; if we can spend more on the best quality science we will do. It is also worth noting that all applications that were fundable in open competition have been funded. 

The NIHR has supported delivery in the health and care system for eight DIPG research studies funded by research funding partners in the charity and public sectors since 2018. 

Written Question

Alun Cairns 

Asked on: 6 September 2023 

To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to help ensure that early career researchers are supported in engaging in research on (a) diffuse intrinsic pontine glioma and (b) other similar diseases. 

Answered by: Will Quince 

Answered on: 11 September 2023 

Brain tumour research, including diffuse intrinsic pontine glioma and similar diseases, remains a challenging scientific area, with a relatively small research community. We are working closely with the Tessa Jowell Brain Cancer Mission (TJBCM) in hosting customised workshops for researchers, and training for clinicians. These actions will grow capacity for brain cancer research, attracting new researchers, developing the community, and supporting researchers to submit high-quality research funding proposals. 

The National Institute for Health and Care Research and the TJBCM recently announced two appointments to the inaugural Tessa Jowell Fellowship programme. These 12-month fellowships will support high quality training in neuro-oncology clinical practice and research, to ensure clinicians are equipped with the relevant research skills needed to lead neuro-oncology trials that change practice. 

Additionally, the TJBCM have designated 28 adult Tessa Jowell Centres of Excellence within the National Health Service, which has created a world-class network of brain tumour treatment and research centres to provide the best care and share best practice. 

Written Question

Daisy Cooper 

Asked on: 1 September 2023 

To ask the Secretary of State for Health and Social Care, what discussions he has had with (a) Servier and (b) the MHRA about making Vorasidenib available to clinically suitable brain tumour patients in the UK under the Early Access to Medicines Scheme 

Answered by: Will Quince 

Answered on: 6 September 2023 

The Secretary of State and the Department have had no specific discussions with Servier about making Vorasidenib available to clinically suitable brain tumour patients in the United Kingdom under the Early Access to Medicines Scheme (EAMS). 

The Medicines and Healthcare Products Regulatory Agency (MHRA) has also not had any specific discussions with the Secretary of State regarding Vorasidenib. The MHRA has not issued a scientific opinion for Vorasidenib under EAMS but should an application for this be received, the MHRA will consider this accordingly. 

Written Question 

Derek Thomas 

Asked on: 20 July 2023 

To ask the Secretary of State for Health and Social Care, with reference to the Answer of 18 July 2023 to Question 193957 on Brain Cancer: Genetics and the report by OurBrainBank entitled Glioblastoma, The neglected disease in the cancer treatment revolution, published July 2023, what assessment he has made for the potential implications for his polices that OurBrainBank research estimated that whole genome sequencing analysis was carried out on approximately 1.6% of brain tumour patients and 1.3% of glioblastoma patients diagnosed since April 2021. 

Answered by: Will Quince 

Answered on: 4 September 2023 

Genomic testing for glioblastoma is included in the National Genomic Test Directory. This testing can be delivered using a range of technologies, one of which is whole genome sequencing (WGS). All patients will be offered Next Generation Sequencing (NGS) technology (large cancer gene panels) to ensure that a patient receives the most appropriate genomic testing depending on their individual circumstances. Anyone who meets the eligibility criteria outlined in the National Genomic Test Directory will be able to access this genomic testing offer. Between January 2022 and June 2023, 505 patients have been referred for WGS because of a suspected glioblastoma or brain tumour diagnosis. In addition to WGS, during 2022/2023, 14,800 genomics tests were performed for neurological tumours, including 3,145 NGS cancer gene panels. 

NHS England has not undertaken any formal assessment of the report by OurBrainBank entitled Glioblastoma and is not aware of any research that demonstrates any clinical benefit of WGS over other genomic technologies (i.e., large cancer gene panels) for glioblastoma; however, work is ongoing to evaluate the potential benefits. This will inform future commission decisions made by NHS England. 

Written Question

Dominic Raab

Asked on: 20 July 2023

To ask the Secretary of State for Health and Social Care, how much funding his Department (a) allocated to and (b) spent on research on brain tumours in each year since 2018.

Awaiting an answer

Written Question

Lord Hunt 

Asked on: 13 July 2023 

To ask His Majesty's Government what assessment they have made of the Early Access to Medicines Scheme to ensure that brain tumour patients are able to access the most promising treatments. 

Answered by: Lord Markham  

Answered on: 19 July 2023 

The early access to medicines scheme (EAMS) aims to give patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation when there is a clear unmet medical need. 

Under the scheme, the Medicines and Healthcare products Regulatory Agency (MHRA) will give a scientific opinion on the benefit/risk balance of the medicine, based on the data available when the EAMS submission was made and the EAMS criteria. The MHRA will make an evaluation of products, including drugs such as for brain tumour treatments, once an application is received. 

If we do receive an application, it is only made public where an EAMS Scientific Opinion (SO) is awarded. All EAMS SOs are published on the EAMS webpage. All drugs that have previously held an EAMS SO are also published on the EAMS webpage. 

Written Question 

Lord Hunt 

Asked on: 13 July 2023 

To ask His Majesty's Government what assessment they have made of the Early Access to Medicines Scheme to ensure that brain tumour patients are able to access the most promising treatments. 

Answered by: Lord Markham  

Answered on: 19 July 2023 

The early access to medicines scheme (EAMS) aims to give patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation when there is a clear unmet medical need. 

Under the scheme, the Medicines and Healthcare products Regulatory Agency (MHRA) will give a scientific opinion on the benefit/risk balance of the medicine, based on the data available when the EAMS submission was made and the EAMS criteria. The MHRA will make an evaluation of products, including drugs such as for brain tumour treatments, once an application is received. 

If we do receive an application, it is only made public where an EAMS Scientific Opinion (SO) is awarded. All EAMS SOs are published on the EAMS webpage. All drugs that have previously held an EAMS SO are also published on the EAMS webpage. 

Written Question

Written Question

Derek Thomas

Asked on: 13 July 2023

To ask the Secretary of State for Health and Social Care, if he will make an assessment of the implications for his policies of the number and proportion of patients diagnosed with glioblastoma who had received whole genome sequencing of their tumours before the end of 2022. 

Answered by: Will Quince

Answered on: 18 July 2023

NHS England, supported by a Genomics Clinical Reference Group and Test Evaluation Working Groups, continually review the National Genomic Test Directory to keep pace with scientific and technological advances, while delivering value for money for the National Health Service. This review will include the genomic testing offer for patients with a suspected glioblastoma diagnosis, as per the eligibility criteria outlined in the National Genomic Test Directory.

A robust, evidence-based process and policy is in place to ensure testing continues to be available for all patients for whom it would be of clinical benefit. The policy is available at the following link:

https://www.england.nhs.uk/wp-content/uploads/2020/12/Updating-the-National-Genomic-Test-Directory-v1-Dec-2020.pdf

The performance of the NHS Genomic Medicine Service is monitored quarterly through an assurance framework, which ensures all seven NHS Genomic Laboratory Hubs are operating to national quality standards. This identifies and minimises any potential variation and ensures consistent delivery of the criteria outlined in the National Genomic Test Directory.

Written Question

Sarah Owen

Asked on: 12 July 2023

To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of bringing forward legislative proposals requiring that brain tumour tissue used for (a) biopsy and (b) analysis is frozen rather than stored in paraffin blocks.

Answered by: Will Quince

No assessment has been made.

Written Question

Navendu Mishra

Asked on: 10 July 2023

To ask the Secretary of State for Health and Social Care, how much of the £40 million allocated in 2018 for brain tumour research over five years has been disbursed to fund that research as of July 2023; and when he plans to allocate the remaining funds.

Answered by: Will Quince

Answered on: 13 July 2023

The Department invests in health research through the National Institute for Health and Care Research (NIHR). Since the 2018 announcement, NIHR has committed £10.7 million spend across 13 brain tumour research studies. All applications to NIHR that have been assessed as “fundable” in open competition have been funded, and this will continue.

Additionally, NIHR research infrastructure supports brain tumour research studies, mainly in the NHS. This infrastructure – people and facilities – is instrumental to the delivery of research funded by the NIHR, charities and others. Resource costs are significant, though it is difficult to disaggregate purely brain tumour spending to add to the £10.7 million figure above.

The Government is committed to funding high-quality brain cancer research, and we expect to spend more as new research progresses. The £40 million funding announcement will remain available, and if we can spend more on the best quality science, we will do so.

Written Question

Derek Thomas

Asked on: 10 May 2023

To ask the Secretary of State for Health and Social Care, with reference to the Minister of Health and Secondary Care’s oral contribution of 9 March 2023, Official Report, column 509, on Brain Tumour Research Funding, if he will provide a breakdown of the £33.9 million spent on brain cancer research in the last five years. 

Answered by: Will Quince

Answered on: 15 May 2023

The information is shown in the table

Department of Health and Social Care:	2018/19	2019/20	2020/21	2021/22	2022/23	Total
National Institute for Health and Care Research	£2.9m	£150k	£2.1m	5.3m	£138k	£10.7m

 

UK Research and Innovation (UKRI) Funding Body:	2018/19	2019/20	2020/21	2021/22	2022/23	Total
Medical Research Council	£1.1m	£484k	£5.4m	£609k	£2.8m	£10.4m
Engineering and Physical Sciences Research Council	£1.1m	£1.5m	£1m	£900k	£1.9m	£6.3m
Innovate UK	£1.5m		£80k	£359k	£857k	£2.8m
UK Research and Innovation	-	-	£1.6m	-	£1.2m	£2.8m
Biotechnology and Biological Sciences Research Council	£200k	£200k	£200k	-	-	£600k
National Centre for the Replacement Refinement and Reduction of Animals in Research	-	-	£100k	-	-	£100k
UKRI total	£3.9m	£2.2m	£8.3m	£1.8m	£6.8m	£23.2m

Oral Question

Lord Hunt

Asked on: 24 April 2023

Answered on: 24 April 2023

 

Written Question

Dan Carden

Asked on: 14 April 2023

Answered on: 20 April 2023

The Department of Health and Social Care welcomes the All-Party Parliamentary Group investigation and will consider the detailed recommendations, which will be worked through with the Department for Science, Innovation and Technology, as well as UK Research and Innovation and the Medical Research Council, and the National Institute for Health and Care Research (NIHR).

The NIHR welcomes funding applications for research into any aspect of human health, including brain tumours. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. The level of research spend in a particular area, is driven by factors including scientific potential and the number and scale of successful funding applications.

Oral Question

Ian Byrne

Asked on: 14 March 2023

Answered on: 20 March 2023

There are currently no plans in place for future ring-fenced research funding for childhood brain tumours.

It is not usual practice to ring-fence funds for particular topics or conditions. The Department of Health and Social Care funds research through the NIHR and the NIHR welcomes funding applications for research into any aspect of human health, including childhood brain tumours. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

Oral Question

Ian Byrne

Asked on: 14 March 2023

Answered on: 20 March 2023

The Department of Health and Social Care welcomes the All-Party Parliamentary Group’s report and will consider the detailed recommendations, which will be worked through with the Department of Science, Innovation and Technology, and UK Research and Innovation and the Medical Research Council, and with the National Institute for Health and Care Research (NIHR).

The NIHR welcomes funding applications for research into any aspect of human health, including brain tumours. As with other Government funders of health research, the NIHR does not allocate funding for specific disease areas. The level of research spend in a particular area, is driven by factors including scientific potential and the number and scale of successful funding applications.

Oral Question

Derek Thomas

Asked on: 15 March 2023

Answered on: 15 March 2023

I thank my hon. Friend for his thoughtful and powerful question. He is absolutely right about the importance of expediting medical research so that we can deliver better care for the people affected. I will make sure that he gets a meeting with the relevant Minister so we can ensure that that funding gets out to the people who need it and we can bring relief to them as quickly as we can. 

Written Question

Lisa Nandy

Asked on: 7 March 2023

Answered on: 14 March 2023

It is not usual practice to ring-fence funds for particular topics or conditions. The Department funds research through the National Institute for Health and Care Research (NIHR) and the NIHR welcomes funding applications for research into any aspect of human health, including childhood brain tumours. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

Written Question

Lisa Nandy

Asked on: 7 March 2023

Answered on: 14 March 2023

The Department-funded National Institute for Health and Care Research (NIHR) invests in research, clinical expertise, specialist facilities, workforce and support services across a range of clinical areas, including brain tumour research.

NIHR has recently announced the outcome of the Biomedical Research Centre (BRC) competition in which six BRCs have been funded to support brain tumour research. The NIHR BRCs work in partnership with other research centres to collect samples for research purposes as well as local and national sample storage facilities to support research into brain tumours.

No specific assessment has been made as to the adequacy of the sample collection and storage infrastructure.

Written Question

Lisa Nandy

Asked on: 7 March 2023

Answered on: 13 March 2023

The Department-funded National Institute for Health and Care Research (NIHR) invests in research, clinical expertise, specialist facilities, workforce and support services across a range of clinical areas, including brain tumour research.

NIHR has recently announced the outcome of the Biomedical Research Centre (BRC) competition in which six BRCs have been funded to support brain tumour research. The NIHR BRCs works in partnership with other research centres such as the CRUK Brain Tumour Centre of Excellence to collect samples for research purposes as well as local and national sample storage facilities to support research into brain tumours.

Written Question

Lisa Nandy

Asked on: 7 March 2023

Answered on: 13 March 2023

The Department invests in health research through the National Institute for Health and Care Research (NIHR). NIHR has recently invested over £969 million to strengthen the infrastructure supporting Phase 1 trial capacity over the next five years. This includes funding for the NIHR Biomedical Research Centres, NIHR Clinical Research Facilities and Experimental Cancer Medicine Centres.

Additionally, NIHR ‘Be Part of Research’ is an online service, now also available on the NHS App, to help people find and take part in health care research including cancer studies.

Written Question

Lord Hunt

Asked on: 14 December 2022

 

Written Question

Emily Thornberry

Asked on: 6 September 2021

To ask the Secretary of State for Health and Social Care, what plans he has to build on the UK-EU Trade and Cooperation Agreement in promoting future collaborations between UK-based and EU-based medical researchers, including for research into brain tumours and childhood cancers.

Answered by Edward Argar MP

Answered on: 6 September 2021

As part of the UK-EU Trade and Cooperation Agreement, the United Kingdom (UK) has agreed to associate with Horizon Europe, furthering the UK’s ambition to become a global science superpower. Our participation will support continued partnerships between UK and European Union’s (EU) science and research experts and provide a platform through which our scientists and innovators can tackle significant and shared challenges. This includes medical research into cancers given that research and innovation on cancer, including childhood cancers, remains a high priority for the EU. The UK has an excellent track record in EU Framework Programmes and we are actively encouraging UK researchers and innovators to form consortia with their UK and EU partners and are encouraging UK researchers and companies to take advantage of this opportunity.

Written Question

David Simmonds

Asked on: 4 March 2021

To ask the Secretary of State for Health and Social Care, what steps his Department has taken to (a) promote collaborative working between (i) the National Institute for Health Research, (ii) UK Research and Innovation, (iii) Cancer Research UK, (iv) the Medical Research Council, the (v) Tessa Jowell Brain Cancer Mission and (vi) other relevant brain tumour research stakeholders and (b) award funding to advance the research being undertaken on brain tumours and brain tumour treatment.

Answered by Edward Argar MP

Answered on: 15 March 2021

The Department supported the establishment of the Tessa Jowell Brain Cancer Mission (TJBCM) in 2018. The TJBCM is a national convening body for all stakeholders engaged in brain tumour research, treatment and care. Its mission is to unite professional, patient, charity and Government groups to share information, and establish transformative programmes that will lead ultimately to a cure for brain tumours.

Active contributors to the TJBCM include the Department’s National Institute for Health Research (NIHR), the Medical Research Council, Cancer Research UK, Brain Tumour Research, the Brain Tumour Charity and Brainstrust as well as representatives of the National Health Service. As part of the establishment of the TJBCM the Department announced £40 million over five years for brain tumour research via the NIHR. The NIHR is also engaging with UK Research and Innovation colleagues.

Written Question

Hilary Benn MP

Asked on: 3 March 2021

To ask the Secretary of State for Work and Pensions, what assessment she has made of the merits of repeated DWP assessments where an individual applicant has had a (a) brain tumour or (b) severe head injury when there is no evidence that the person’s condition will improve.

Answered by Colleen Fletcher MP

Answered on: 8 March 2021

In both Work Capability Assessments (WCA) and Personal Independence Payment (PIP) assessments, healthcare professionals advise on a review period that is appropriate to the individual claimant. In the WCA, if a claimant has a condition that causes severe functional impairment and there is no realistic prospect of recovery of function they can be placed in the severe conditions group and would not be routinely reassessed. In PIP, claimants receiving the highest level of benefit whose functional ability will not improve will receive an ongoing award with a light touch review at the 10-year point. The up-coming Health and Disability Green Paper will focus on how we can make further improvements to assessments and seek views on future changes.

Question

Hilary Benn

Asked on: 10th February 2021

To ask the Secretary of State for Health and Social Care, what the latest research findings from research funded by his Department into glioma cancer have shown; and if he will make a statement.