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To ask the Secretary of State for Health and Social Care, what guidance his Department provides to (a) GPs and (b) health visitors to aid the early diagnosis of neuroblastoma.
To ask the Secretary of State for Health and Social Care, what guidance his Department provides to (a) GPs and (b) health visitors to aid the early diagnosis of neuroblastoma.
General practice teams are expected to follow guidance from the National Institute for Health and Care Excellence. Where symptoms are suggestive of neuroblastoma, appropriate referral to a specialist must be made.
Health visitors are not responsible for making diagnoses, but they play a vital role in providing advice and support to families and in recognising when a child may require further clinical assessment. They remain vigilant for signs that could indicate serious health concerns, including cancers, in line with professional guidance and protocols.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase funding for research into (a) neuroblastoma and (b) other childhood cancers.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase funding for research into (a) neuroblastoma and (b) other childhood cancers.
The Department invests £1.6 billion each year on research through its research delivery arm, the National Institute for Health and Care Research (NIHR). NIHR research expenditure for all cancers was £133 million in 2023/24, reflecting its high priority.
Research is a vital part of improving diagnosis and treatment for children and young people with cancer. The NIHR spent approximately £9.9 million over the last five financial years, from 2019/20 to 2023/24, on directly funded research to improve outcomes for children and young people with cancer, including for neuroblastoma.
These investments are pivotal to informing efforts to improve cancer prevention, treatment, and outcomes. An example of a recent award is the RElapse Decision MAking Parent Process trial, for the development of a treatment decision aid for parents of a child with neuroblastoma which has relapsed. The total award value was £308,000.
The NIHR funds research in response to proposals received from scientists rather than allocating funding to specific disease areas. The NIHR continues to encourage and welcome funding applications for research into any aspect of human health, including neuroblastoma research and other childhood cancers. 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.
The Department relaunched the Children and Young People’s Cancer Taskforce, which met on 4 March 2025. Caroline Dinenage and Professor Darren Hargrave have been appointed as co-chairs. The taskforce will examine clinical and non-clinical ways to improve outcomes and patient experience for children and young people with cancer, including neuroblastoma research. The taskforce will feed into wider Department work on the National Cancer Plan.
To ask the Secretary of State for Health and Social Care, whether he plans to make difluoromethylornithine available on the NHS for children with high-risk neuroblastoma.
To ask the Secretary of State for Health and Social Care, whether he plans to make difluoromethylornithine available on the NHS for children with high-risk neuroblastoma.
We understand how important it is that cancer patients are able to benefit from rapid access to effective new treatments. We are aware that the manufacturer difluoromethylornithine (DFMO) has applied for a United Kingdom marketing authorisation through Project Orbis, which is an international partnership that allows the more rapid review and approval of promising new cancer treatments.
The National Institute for Health and Care Excellence has already begun evaluating this treatment with the aim of publishing guidance for the National Health Service on its use as soon as possible, if it receives a UK licence.
We understand that the manufacturer of DFMO, Norgine, is setting up a ‘compassionate use’ programme, meaning it will be made available free of charge in the UK for individual patients upon a request from a UK prescribing clinician, before a decision is made on the UK marketing authorisation.
Agreed to on question.
Agreed to on question.
It is a privilege to have secured this debate on tackling neuroblastoma. I have been seeking the debate ever since I had the pleasure of meeting my constituent Mark Bell and his family at a fundraising event last year. I am pleased that Mark, Luke’s father, and, Carol, Luke’s grandmother,...
It is a privilege to have secured this debate on tackling neuroblastoma. I have been seeking the debate ever since I had the pleasure of meeting my constituent Mark Bell and his family at a fundraising event last year. I am pleased that Mark, Luke’s father, and, Carol, Luke’s grandmother,...
I thank my hon. Friend the Member for Darlington (Peter Gibson) for securing this important debate. I thank him especially for sharing the experience of his constituent Mark Bell, and the challenging events leading up to the devasting loss of his much-loved son Luke to neuroblastoma. I am pleased that...
I thank my hon. Friend the Member for Darlington (Peter Gibson) for securing this important debate. I thank him especially for sharing the experience of his constituent Mark Bell, and the challenging events leading up to the devasting loss of his much-loved son Luke to neuroblastoma. I am pleased that...
To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated for research into treatment of neuroblastoma in each of the last 10 years; and if he will make a statement.
To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated for research into treatment of neuroblastoma in each of the last 10 years; and if he will make a statement.
A table is attached showing the research funding into treatment of neuroblastoma.
The National Institute for Health and Care Research (NIHR) is also supporting delivery in the health and care system of neuroblastoma research, funded by research funding partners in the charity and public sectors. For example, over the last 10 years, the NIHR Clinical Research Network has supported approximately 27 neuroblastoma related studies.
The NIHR welcomes funding applications for research into any aspect of human health, including neuroblastoma. 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.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to raise public awareness of neuroblastoma.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to raise public awareness of neuroblastoma.
Public Health England’s Be Clear on Cancer campaigns aim to help improve earlier diagnosis of cancer by raising awareness of the signs and symptoms of specific cancers and encouraging those with symptoms to see their doctor promptly. The decision on which cancers should be the focus of Be Clear on Cancer campaigns is informed by a steering group, whose members include primary and secondary care clinicians and key voluntary sector organisations.
A number of factors are taken into account when deciding which campaigns to develop and run, with the main criteria being the scope to save lives through earlier diagnosis and whether the cancer has a clear and specific early sign or symptom that the general public can act upon should it arise.
Be Clear on Cancer campaigns do not currently include neuroblastoma. There are currently no plans to include neuroblastoma, however decisions on which cancers to campaign on is under constant review by the steering group, informed by the available data and medical information resources.
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of trends in the level of funding for neuroblastoma research.
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of trends in the level of funding for neuroblastoma research.
Research is crucial in the fight against cancer. That is why the Department invests £1 billion per year in health research through the National Institute for Health Research (NIHR).
NIHR cancer research expenditure has risen from £101 million in 2010/11 to £137 million in 2016/17. This constitutes the largest investment in a disease area.
The NIHR has spent approximately £5 million on neuroblastoma research covering the period 2011 - present. The following table provides an annual breakdown:
2011/12 | 2012/13 | 2013/14 | 2014/15 | 2015/16 | 2016/17 | 2017/18 |
£342,769 | £424,732 | £643,040 | £890,394 | £942,990 | £1,264,231 | £523,260 |
In May the Government announced £40 million over the next five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. Funding will be invested through the NIHR to support a wide range of research to support the translation of laboratory discoveries into treatments and better care for patients. We are relying on researchers to submit high-quality research proposals in this very difficult area. To encourage such applications we have released a NIHR Highlight Notice on brain tumour research asking research teams to submit collaborative applications building on recent initiatives and investments.
The NIHR welcomes funding applications for research into any aspect of human health. 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 on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
To ask the Secretary of State for Health and Social Care, how much funding was allocated from the public purse to neuroblastoma research in 2016-17.
To ask the Secretary of State for Health and Social Care, how much funding was allocated from the public purse to neuroblastoma research in 2016-17.
Research is crucial in the fight against cancer. That is why the Department invests £1 billion per year in health research through the National Institute for Health Research (NIHR).
NIHR cancer research expenditure has risen from £101 million in 2010/11 to £137 million in 2016/17. This constitutes the largest investment in a disease area.
The NIHR spent approximately £1.26 million on neuroblastoma research in financial year 2016/17.
NIHR welcomes funding applications for research into any aspect of human health. 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 on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
Neuroblastoma is an aggressive form of cancer that impacts 100 children each year, most of whom are
under five. Thanks to a campaign involving my constituents the Jeffreys family, and many hon. Members from across this House, the National Institute for Health and Care Excellence has now approved a drug that may extend lives. Tragically for my five-year-old constituent Jack Jeffreys this has come too late, and he is now undergoing palliative care, with his family at his bedside. For his legacy, and for all of those other children who could lead longer lives, may I ask the Prime Minister to ensure that the NHS now commissions and uses this drug?
Neuroblastoma is an aggressive form of cancer that impacts 100 children each year, most of whom are
under five. Thanks to a campaign involving my constituents the Jeffreys family, and many hon. Members from across this House, the National Institute for Health and Care Excellence has now approved a drug that may extend lives. Tragically for my five-year-old constituent Jack Jeffreys this has come too late, and he is now undergoing palliative care, with his family at his bedside. For his legacy, and for all of those other children who could lead longer lives, may I ask the Prime Minister to ensure that the NHS now commissions and uses this drug?
I am sure the whole House will join me in extending our thoughts and prayers to Jack’s family at what must be a terribly, terribly difficult and tragic time for them. As my hon. Friend has indicated, NICE has recommended the drug that he refers to for use in children; that was in draft guidance it recently issued. I understand the drug is now available across the NHS, through the cancer drugs fund, and NICE will be publishing its final guidance in August. I am sure the drug will be rolled out swiftly to ensure that as many people as possible are able to benefit from it as swiftly as possible.
I am sure the whole House will join me in extending our thoughts and prayers to Jack’s family at what must be a terribly, terribly difficult and tragic time for them. As my hon. Friend has indicated, NICE has recommended the drug that he refers to for use in children; that was in draft guidance it recently issued. I understand the drug is now available across the NHS, through the cancer drugs fund, and NICE will be publishing its final guidance in August. I am sure the drug will be rolled out swiftly to ensure that as many people as possible are able to benefit from it as swiftly as possible.
I am sure the whole House will join me in extending our thoughts and prayers to Jack’s family at what must be a terribly, terribly difficult and tragic time for them. As my hon. Friend has indicated, NICE has recommended the drug that he refers to for use in children; that was in draft guidance it recently issued. I understand the drug is now available across the NHS, through the cancer drugs fund, and NICE will be publishing its final guidance in August. I am sure the drug will be rolled out swiftly to ensure that as many people as possible are able to benefit from it as swiftly as possible.
Neuroblastoma is an aggressive form of cancer that impacts 100 children each year, most of whom are
under five. Thanks to a campaign involving my constituents the Jeffreys family, and many hon. Members from across this House, the National Institute for Health and Care Excellence has now approved a drug that may extend lives. Tragically for my five-year-old constituent Jack Jeffreys this has come too late, and he is now undergoing palliative care, with his family at his bedside. For his legacy, and for all of those other children who could lead longer lives, may I ask the Prime Minister to ensure that the NHS now commissions and uses this drug?
To ask the Secretary of State for Health and Social Care, what discussions he has had with (a) NHS and (b) NICE officials on the availability of the drug Anti GD2 for the treatment of neuroblastoma.
To ask the Secretary of State for Health and Social Care, what discussions he has had with (a) NHS and (b) NICE officials on the availability of the drug Anti GD2 for the treatment of neuroblastoma.
Current treatments for high-risk neuroblastoma include chemotherapy, radiotherapy, stem cell transplantation, surgery and isotretinoin. Dinutuximab beta gained marketing authorisation in May 2017 and is used in combination with interleukin-2 (aldesleukin) as an additional treatment option for patients who have high-risk neuroblastoma and have shown some improvement with previous treatments or with relapsed or refractory neuroblastoma.
The National Institute for Health and Care Excellence (NICE) published final draft technology appraisal guidance on 12 July that recommends dinutuximab beta as a clinically and cost-effective use of National Health Service resources for patients meeting specified clinical criteria. Stakeholders now have an opportunity to appeal NICE’s draft recommendations. NICE expects to publish final guidance in August 2018.
Ministers and Departmental officials regularly discuss a range of issues with colleagues in NHS England and NICE, including the availability of individual treatments.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that children with Neuroblastoma have access to the most effective (a) treatments and (b) drugs.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that children with Neuroblastoma have access to the most effective (a) treatments and (b) drugs.
Current treatments for high-risk neuroblastoma include chemotherapy, radiotherapy, stem cell transplantation, surgery and isotretinoin. Dinutuximab beta gained marketing authorisation in May 2017 and is used in combination with interleukin-2 (aldesleukin) as an additional treatment option for patients who have high-risk neuroblastoma and have shown some improvement with previous treatments or with relapsed or refractory neuroblastoma.
The National Institute for Health and Care Excellence (NICE) published final draft technology appraisal guidance on 12 July that recommends dinutuximab beta as a clinically and cost-effective use of National Health Service resources for patients meeting specified clinical criteria. Stakeholders now have an opportunity to appeal NICE’s draft recommendations. NICE expects to publish final guidance in August 2018.
Ministers and Departmental officials regularly discuss a range of issues with colleagues in NHS England and NICE, including the availability of individual treatments.
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that patients with Neuroblastoma are able to access appropriate treatments on the NHS.
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that patients with Neuroblastoma are able to access appropriate treatments on the NHS.
Through its technology appraisal programme, the National Institute for Health and Care Excellence (NICE) develops authoritative, independent and evidence-based recommendations for the National Health Service on whether drugs and treatments represent a clinically and cost effective use of NHS resources. NICE develops technology appraisal guidance for the NHS on all new cancer drugs, including for neuroblastoma, and NHS England is legally required to fund cancer drugs recommended in NICE technology appraisal guidance.
NICE is currently appraising the drug dinutuximab beta for use in the treatment of high-risk neuroblastoma and has not yet issued final guidance. NICE recently consulted on its draft recommendations and will take the comments it received fully into account in developing its final guidance.
NICE has also been asked to appraise the drug dinutuximab for use in the treatment of high-risk neuroblastoma but the manufacturer asked for the drug’s marketing authorisation to be withdrawn because of supply issues and NICE’s appraisal has now been suspended.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the provision of medicines on the NHS for people with Neuroblastoma.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the provision of medicines on the NHS for people with Neuroblastoma.
Through its technology appraisal programme, the National Institute for Health and Care Excellence (NICE) develops authoritative, independent and evidence-based recommendations for the National Health Service on whether drugs and treatments represent a clinically and cost effective use of NHS resources. NICE develops technology appraisal guidance for the NHS on all new cancer drugs, including for neuroblastoma, and NHS England is legally required to fund cancer drugs recommended in NICE technology appraisal guidance.
NICE is currently appraising the drug dinutuximab beta for use in the treatment of high-risk neuroblastoma and has not yet issued final guidance. NICE recently consulted on its draft recommendations and will take the comments it received fully into account in developing its final guidance.
NICE has also been asked to appraise the drug dinutuximab for use in the treatment of high-risk neuroblastoma but the manufacturer asked for the drug’s marketing authorisation to be withdrawn because of supply issues and NICE’s appraisal has now been suspended.
To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on the availability of Dinutuximab Beta on the NHS.
To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on the availability of Dinutuximab Beta on the NHS.
Departmental officials regularly discuss a range of issues with colleagues in the National Institute for Health and Care Excellence, and have had a number of discussions about the ongoing technology appraisal of dinutuximab beta for the treatment of high-risk neuroblastoma.
To ask the Secretary of State for Health and Social Care, what assessment he has made of accuracy of NICE’s decision not to fund Dinutuximab Beta for patients with Neuroblastoma.
To ask the Secretary of State for Health and Social Care, what assessment he has made of accuracy of NICE’s decision not to fund Dinutuximab Beta for patients with Neuroblastoma.
Through its technology appraisal programme, the National Institute for Health and Care Excellence (NICE) develops authoritative, independent and evidence-based recommendations for the National Health Service on whether drugs and treatments represent a clinically and cost effective use of NHS resources. NICE develops technology appraisal guidance for the NHS on all new cancer drugs, including for neuroblastoma, and NHS England is legally required to fund cancer drugs recommended in NICE technology appraisal guidance.
NICE is currently appraising the drug dinutuximab beta for use in the treatment of high-risk neuroblastoma and has not yet issued final guidance. NICE recently consulted on its draft recommendations and will take the comments it received fully into account in developing its final guidance.
NICE has also been asked to appraise the drug dinutuximab for use in the treatment of high-risk neuroblastoma but the manufacturer asked for the drug’s marketing authorisation to be withdrawn because of supply issues and NICE’s appraisal has now been suspended.
To ask the Secretary of State for Health and Social Care, what discussions his Department has had with representatives of Eusa Pharma on the availability of Dinutuximab Beta on the NHS.
To ask the Secretary of State for Health and Social Care, what discussions his Department has had with representatives of Eusa Pharma on the availability of Dinutuximab Beta on the NHS.
Departmental officials have had no such discussions. However, representatives of the National Institute for Health and Care Excellence are in regular contact with Eusa Pharma in the context of the ongoing technology appraisal of dinutuximab beta for the treatment of high risk neuroblastoma.
This month, the National Institute for Health and Care Excellence—NICE—will decide whether to fund a new treatment for neuroblastoma, a vicious childhood cancer that is affecting my constituent, Isla Caton. Will the Prime Minister encourage NICE and the drugs companies to do a deal to provide new treatments for children in Britain, so that their families do not have to fundraise for them to receive those treatments in America?
This month, the National Institute for Health and Care Excellence—NICE—will decide whether to fund a new treatment for neuroblastoma, a vicious childhood cancer that is affecting my constituent, Isla Caton. Will the Prime Minister encourage NICE and the drugs companies to do a deal to provide new treatments for children in Britain, so that their families do not have to fundraise for them to receive those treatments in America?
I know that my hon. Friend has raised this issue on behalf of her constituents; I believe that she has a constituency case involving the issue. NICE is developing guidelines for the NHS on the use of dinutuximab beta—I am not sure if I pronounced that correctly—for the treatment of high-risk neuroblastoma. It has not been able to recommend the drug as a clinically and cost-effective use of resources in its draft guidance, but it has consulted stakeholders on its draft recommendations. This is an ongoing NICE appraisal, and it is not for the Government to intervene in that, but NICE will obviously take all comments into account in its final guidance. I think that the manufacturer of the drug is currently making it available to some NHS patients through a compassionate use scheme, and has agreed to continue the scheme for patients who are currently receiving the treatment.