Sorcha Eastwood

Where a person who would have been eligible to apply to the Infected Blood Compensation Scheme as an infected person has died, the personal representatives of the deceased person’s estate may apply for compensation on behalf of their estate. People who are affected, such as bereaved partners, can claim compensation in their own right in addition to any claims on behalf of the estate.

The Government expects the majority of claims will be made via the tariff-based Core Route. In some exceptional cases however, the level of compensation awarded through the Core Route may not be sufficiently reflective of the financial loss and care costs that a person has experienced as a result of infected blood. This may be the case where, for example, the person had particularly high earnings prior to their infection and therefore suffered greater financial loss, or where they have suffered a particular associated health condition that has necessitated increased levels of care. Where an applicant can demonstrate that their defined circumstances necessitate a higher compensation payment for care and financial loss, they will be able to apply for additional compensation awards through the Supplementary Route.

The Infected Blood Compensation Authority will aim to ensure that appropriate advice and support is available to assist people with managing their compensation awards, accessing financial services, and accessing benefits advice where relevant. Sir Robert Francis KC recommended in his report that legal support is available to people who want to claim compensation. The Government accepted this recommendation and is working with IBCA to develop a package of support services.

Anyone with an eligible Hepatitis B infection will be able to claim compensation calculated under five categories of award including a financial loss award. The financial loss award recognises the past and future financial losses suffered as a result of infection. This includes both financial loss and loss of services. Financial Loss award calculations take into account a person’s average loss of earnings in the years prior to the establishment of the Compensation Scheme, as well as future loss of earnings up to healthy life expectancy and will disregard whether or not an individual received Infected Blood Support Scheme payments prior to 31 March 2025.

People who received contaminated blood or blood products which resulted in a chronic Hepatitis B infection will be eligible to claim compensation under the Infected Blood Compensation Scheme. The estates of those who died from an acute Hepatitis B infection during the acute period will also be eligible to claim compensation. The Infected Blood Compensation Scheme will be delivered by the UK-wide delivery body, the Infected Blood Compensation Authority, which is separate to the current support schemes.

The Inquiry is independent of Government and the conduct of the Inquiry is a matter for the Chair. Since it began, the Inquiry sat to hear evidence for 290 days from 374 witnesses, including people with hepatitis B. In total, the Inquiry has received 5,570 witness statements, including 4,265 statements from people infected and affected.

Other than for those who are nearing the end of their life, the extra costs disability benefits, such as Personal Independence Payment (PIP) and Disability Living Allowance (DLA), are assessed on the basis of the needs arising from a long-term health condition or disability rather than a diagnosis. PIP has replaced DLA for working age people. DLA is claimed by children under the age of 16 years old. Children and young people who have been diagnosed with cancer and who face extra costs as a result of their ill health can apply for DLA immediately. The qualifying period does not apply to DLA claimants who are terminally ill and do not have to satisfy the three--month qualifying period. They will have their claim fast tracked and are eligible for the higher-rate care component from the date of claim.

The Department supports people nearing the end of life through the Special Rules for End of Life, as they will incur additional costs for additional care and support. We enable children and young people who are nearing the end of their lives to get faster, easier access to the extra costs disability benefits with a guaranteed entitlement.

Professor Lord Darzi highlights that the National Health Service has been starved of capital, with outdated scanners, too little automation, and that the NHS is failing to enter the digital era. The findings provide a diagnosis of the challenges facing the NHS which will inform the solutions, including the 10-year plan to reform the NHS.

Digital transformation and technology are critical to the future of the NHS. We are committed to providing the NHS with the latest technology and replacing outdated equipment to catch cancer and other conditions earlier, thereby saving lives.

As part of this, we are progressing our commitment to double the number of magnetic resonance imaging and computed tomography scanners to address the challenges in diagnostic waiting times, accelerate cancer diagnosis, and build an NHS fit for the future. We will harness the power of technologies like artificial intelligence to transform the speed and accuracy of diagnostic services, saving potentially thousands of lives.

The Frontline Digitisation programme is working to improve digital maturity across the NHS, prioritising hardware, connectivity, and electronic patient record systems. National support is in place for trusts to procure and implement electronic patient records.

Making improvements across different cancer types is critical to reducing disparities in cancer survival. Early cancer diagnosis is also a specific priority within the National Health Service’s wider Core20Plus5 approach to reducing healthcare inequalities.

We recognise there are particular challenges for a number of different populations, particularly for people living in the most deprived areas of the country. As part of our wider strategy on early diagnosis, we are directly targeting our activity at areas we know will make a difference.

The NHS’s Help Us, Help You cancer campaigns increase awareness of cancer symptoms, address barriers, and encourage people to get checked. Some campaigns focus on specific symptoms while others focus on fear as a barrier to help-seeking, which is relevant across all cancer types. The key target audience for these campaigns are people aged 50 year old and over living in more disadvantaged areas, as well as groups more likely to experience health inequalities, such as black and South Asian people.

NHS England and the integrated care boards are responsible for commissioning and ensuring the healthcare needs of local communities are met, including providing support for travel.

The Department-funded National Institute of Health and Care Research (NIHR) funds research and research infrastructure which supports patients and the public to participate in high-quality research, including clinical research on blood cancer.

NIHR infrastructure provides world-class research expertise, specialist facilities, a research delivery workforce, and support services, which all help to support and deliver research across the National Health Service and the wider health and care system.

The Department is committed to implementing the recommendations of Lord O'Shaughnessy’s review into commercial clinical trials, making sure the United Kingdom is one of the best places in the world to conduct cutting-edge clinical research, including research into cancer.

The Department spends £1.5 billion per year on research through the NIHR. NIHR research expenditure for all cancers was over £121.8 million for 2022/23, with more spent on cancer than any other disease group.

No such assessment has been made. The Department-funded National Institute of Health and Care Research (NIHR) funds research and research infrastructure which supports patients and the public to participate in high-quality research. The NIHR supported the opening of 171 studies on blood cancer and the recruitment of 7,939 participants between 2021/22 and 2023/24, indicating a consistent level of participation.

The Department is committed to implementing the recommendations of Lord O'Shaughnessy’s review into commercial clinical trials, maximising the United Kingdom’s potential to lead the world in clinical trials, and ensuring that innovative, lifesaving treatments are accessible to National Health Service patients. Our aim is to ensure all patients, including those in underrepresented groups, are empowered to directly and proactively explore research opportunities.

The NIHR provides an online service called Be Part of Research, which promotes participation in health and social care research by allowing users to search for relevant studies and register their interest. This can also be accessed through the NHS App. This makes it easier for people to find and take part in health and care research that is relevant to them.

There are no current plans to hold discussions with the devolved administrations on co-ordinating national cancer registries. The National Disease Registration Service (NDRS), which includes the National Cancer Registration and Analysis Service, is a member of the United Kingdom and Ireland Association of Cancer Registries (UKIACR). The UKIACR has interests in all aspects of cancer registration, both in its methodology and in its application, to the collection, analysis, and publication of population-based data on the incidence, mortality, and survivability from cancer, and in the use of this data for research aimed at controlling cancer in the population. More details are available at the following link:

https://ukiacr.org/about/ukiacr-constitution

Staff from the NDRS attend quarterly UKIACR executive meetings, where collaboration and standardisation, where possible, of the collection and reporting of cancer data is discussed. NDRS analysts also attend quarterly meetings with UKIACR analysts, where detailed discussions are held to ascertain any differences in the reporting of cancer data, and how these can be made analogous. Annual performance indicators, including key performance indicators for haematology, are available at the following link:

https://ukiacr.org/kpis

England and Wales use the same cancer registration information and communication technology environment, and contracts are held between England, Wales, and Scotland, respectively, to provide the mechanisms to collect and store radiotherapy data.

The National Disease Registration Service, through the National Cancer Registration and Analysis Services (NCRAS), collects information on how many people in England have cancer. Blood cancer is included as a distinct category, labelled haematological neoplasms. The National Disease Registration Service’s website also shows the number of people treated for different tumour types by treatment type, as well as survival rates, mortality rates, and data on urgent suspected cancer referrals. This information is available at the following link:

https://www.cancerdata.nhs.uk/

All cases of cancer diagnosed and treated in the National Health Service in England are registered by the NCRAS. This creates a clinically rich data resource that is used to measure diagnosis, treatment, and outcomes for patients diagnosed with cancer. The data held by the NCRAS supports service provision and commissioning in the NHS, clinical audits, and public health and epidemiological research, all of which contribute to improved outcomes for those diagnosed with cancer.

Information on the number of blood cancer clinical nurse specialists employed in the National Health Service, and the number of vacant posts, is not held centrally.

The NHS has been facing chronic workforce shortages for years, and we have to be honest that bringing in the staff we need will take time.  We are committed to training the staff we need to get patients seen on time.  To achieve this, we will reform the NHS to deliver more care in the community and more preventative care.

As we fix the NHS, we will deliver the NHS Long Term Workforce Plan, so patients, including blood cancer patients, are always cared for by the relevant, qualified healthcare professionals.

NHS England is committed to ensuring that all cancer patients are offered Holistic Needs Assessment and Personalised Care and Support Planning, ensuring care is focused on what matters most to each person. This is being delivered in line with the NHS Comprehensive Model for Personalised Care, empowering people to manage their care and the impact of their cancer, and maximise the potential of digital and community-based support.

Health and wellbeing information and support is provided from diagnosis onwards and includes access to NHS Talking Therapy services for anxiety and depression. This is alongside wider work to improve psychosocial support for people affected by cancer, such as through local partnerships with cancer support charities.

Palforzia is a peanut immunotherapy drug that helps reduce the severity of children's allergic reactions that may occur with exposure to peanuts. Data on the number and geographical location of children that have had access to Palforzia in England is not held by the Department.

The adoption of new treatments into the National Health Service in England is generally the result of National Institute for Health and Care Excellence (NICE) guidance and commissioner decisions. NHS England and integrated care boards are required to put access in place for any treatment that carries a positive recommendation from the Technology Appraisal programme, operated by the NICE.

Where treatments are approved by the NICE through the Technology Appraisal programme, the NHS is required to make them available within agreed timescales. Implementation of any NICE approvals should be supported by a service readiness assessment, and the development of additional capacity where necessary.

The Department has been working with suppliers to address current supply issues with pancreatic enzyme replacement therapy (PERT), including Creon, used in the treatment of cystic fibrosis and certain cancers, including pancreatic cancer. The supply issues are impacting countries throughout Europe, and have been caused by the limited availability of raw ingredients and manufacturing capacity constraints in producing the volumes needed to meet demand. The Department is continuing to work with all suppliers of PERT to help resolve the supply issues in the short and longer term. This includes asking that they expedite deliveries, source stock from other markets, and increase production.

We have issued comprehensive guidance to healthcare professionals about these supply issues, which provides advice on how to manage patients whilst there is disruption to supply. This guidance is being kept under review, and updates will be made as necessary. Serious Shortage Protocols are in place for Creon 10,000 and 25,000 capsules to limit prescriptions to one months’ supply, to allow demand management.

We understand how frustrating and distressing medicine supply issues can be. While we can’t always prevent supply issues from occurring, the Department has a range of well-established processes and tools to manage them when they arise, and to help mitigate risks to patients.

The Department is responsible for healthcare in England. In Northern Ireland, health is a transferred matter, and for Scotland and Wales, health is a devolved matter. The Government has not yet made a formal assessment on a cancer plan for children and young people, or a United Kingdom-wide cancer needs delivery group. However, as part of the Department’s work to improve the experience and outcomes for children and young people with cancer in England, Department officials have previously undertaken some engagement work with stakeholders across the cancer sector to gain a further understanding of the unique needs and challenges for children and young people with cancer in England. This engagement included exploring key issues in relation to detection and diagnosis, genomic testing and treatment, and research and innovation. While the initial focus has been on children and young people’s cancer services in England, the Department is keen to expand collaboration in order to benefit children and young people’s cancer outcomes as widely as possible.

Department officials regularly meet with counterparts from other Government departments and the devolved administrations, to support research and access to clinical trials across the UK. The Department is committed to ensuring clinical trials are people-centred and more accessible, including for children and young people. This will involve making it easier for patients, service users, and members of the public across the UK to access and participate in research, if they want to. Our aim is to lead the world in clinical trials and ensure that all patients, their families, and their carers are empowered to directly and proactively explore research opportunities, and to make informed decisions about participating in research.

At this stage the Department has not made a formal assessment of the adequacy of support for travel for young cancer patients, including schemes for young cancer patients from Northern Ireland travelling to receive treatment in England, or the merits of establishing a UK-wide travel fund. NHS England and the integrated care boards are responsible for commissioning and ensuring the healthcare needs of local communities are met, including providing support for travel. The National Health Service runs schemes in England to provide financial assistance for travel to a hospital or other NHS premises for specialist NHS treatment or diagnostics tests, when referred by a doctor or other primary healthcare professional. The Healthcare Travel Costs Scheme (HTCS) provides financial assistance to patients in England who do not have a medical need for transport, but who require assistance with the costs of travelling to receive certain NHS services. Patients who do not qualify for the HTCS and are on a low income may be able to claim the costs from the Department for Work and Pensions through Universal Credit or Personal Independence Payment.

The Department is responsible for healthcare in England. In Northern Ireland, health is a transferred matter, and for Scotland and Wales, health is a devolved matter. The Government has not yet made a formal assessment on a cancer plan for children and young people, or a United Kingdom-wide cancer needs delivery group. However, as part of the Department’s work to improve the experience and outcomes for children and young people with cancer in England, Department officials have previously undertaken some engagement work with stakeholders across the cancer sector to gain a further understanding of the unique needs and challenges for children and young people with cancer in England. This engagement included exploring key issues in relation to detection and diagnosis, genomic testing and treatment, and research and innovation. While the initial focus has been on children and young people’s cancer services in England, the Department is keen to expand collaboration in order to benefit children and young people’s cancer outcomes as widely as possible.

Department officials regularly meet with counterparts from other Government departments and the devolved administrations, to support research and access to clinical trials across the UK. The Department is committed to ensuring clinical trials are people-centred and more accessible, including for children and young people. This will involve making it easier for patients, service users, and members of the public across the UK to access and participate in research, if they want to. Our aim is to lead the world in clinical trials and ensure that all patients, their families, and their carers are empowered to directly and proactively explore research opportunities, and to make informed decisions about participating in research.

At this stage the Department has not made a formal assessment of the adequacy of support for travel for young cancer patients, including schemes for young cancer patients from Northern Ireland travelling to receive treatment in England, or the merits of establishing a UK-wide travel fund. NHS England and the integrated care boards are responsible for commissioning and ensuring the healthcare needs of local communities are met, including providing support for travel. The National Health Service runs schemes in England to provide financial assistance for travel to a hospital or other NHS premises for specialist NHS treatment or diagnostics tests, when referred by a doctor or other primary healthcare professional. The Healthcare Travel Costs Scheme (HTCS) provides financial assistance to patients in England who do not have a medical need for transport, but who require assistance with the costs of travelling to receive certain NHS services. Patients who do not qualify for the HTCS and are on a low income may be able to claim the costs from the Department for Work and Pensions through Universal Credit or Personal Independence Payment.

The Department is responsible for healthcare in England. In Northern Ireland, health is a transferred matter, and for Scotland and Wales, health is a devolved matter. The Government has not yet made a formal assessment on a cancer plan for children and young people, or a United Kingdom-wide cancer needs delivery group. However, as part of the Department’s work to improve the experience and outcomes for children and young people with cancer in England, Department officials have previously undertaken some engagement work with stakeholders across the cancer sector to gain a further understanding of the unique needs and challenges for children and young people with cancer in England. This engagement included exploring key issues in relation to detection and diagnosis, genomic testing and treatment, and research and innovation. While the initial focus has been on children and young people’s cancer services in England, the Department is keen to expand collaboration in order to benefit children and young people’s cancer outcomes as widely as possible.

Department officials regularly meet with counterparts from other Government departments and the devolved administrations, to support research and access to clinical trials across the UK. The Department is committed to ensuring clinical trials are people-centred and more accessible, including for children and young people. This will involve making it easier for patients, service users, and members of the public across the UK to access and participate in research, if they want to. Our aim is to lead the world in clinical trials and ensure that all patients, their families, and their carers are empowered to directly and proactively explore research opportunities, and to make informed decisions about participating in research.

At this stage the Department has not made a formal assessment of the adequacy of support for travel for young cancer patients, including schemes for young cancer patients from Northern Ireland travelling to receive treatment in England, or the merits of establishing a UK-wide travel fund. NHS England and the integrated care boards are responsible for commissioning and ensuring the healthcare needs of local communities are met, including providing support for travel. The National Health Service runs schemes in England to provide financial assistance for travel to a hospital or other NHS premises for specialist NHS treatment or diagnostics tests, when referred by a doctor or other primary healthcare professional. The Healthcare Travel Costs Scheme (HTCS) provides financial assistance to patients in England who do not have a medical need for transport, but who require assistance with the costs of travelling to receive certain NHS services. Patients who do not qualify for the HTCS and are on a low income may be able to claim the costs from the Department for Work and Pensions through Universal Credit or Personal Independence Payment.

The Department’s Stem Cell Programme is providing £2.4 million of funding for the period 2022 to 2025. The programme is being delivered by NHS Blood and Transplant (NHSBT), and Anthony Nolan. It aims to enhance the resilience of the United Kingdom’s stem cell supply by strategically recruiting donors, particularly those most likely to donate, and to address health disparities through targeted campaigns, with a focus on ethnic minority communities. By increasing the pool of potential donors, the programme seeks to improve the availability of matches in the UK, ultimately reducing waiting times for patients in need of stem cell treatment.

The UK aligned registry has over 2 million potential stem cell donors registered. NHSBT and Anthony Nolan are raising awareness of the importance of stem cell donation and increasing the number of donors on the register through a range of methods including partnering with community organisations, working with volunteer student groups, and engaging with active blood, plasma, and platelet donors.

£1.5 billion per year is invested by the Department of Health and Social Care on health research through the National Institute for Health and Care Research (NIHR).The NIHR research expenditure for all cancers was over £121.8 million for 2022/23, with more spent on cancer than any other disease group. Over £20 million of this was spent on Leukaemia research specifically.

In 2022/23 alone, the NIHR Cancer Research Network supported over 950 cancer research studies involving over 90,000 participants. Further investments in 10 Biomedical Research Centres and a network of Experimental Cancer Medicine Centres are supporting the discovery, development, and testing of new cancer treatments, including through hospital-based clinical trials, across the country.

The NIHR continues to encourage and welcome applications for research into any aspect of human health, including blood and all other cancers. 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, rather than against specific disease funding allocations. We would welcome more applications from researchers working on cancer prevention, treatment, and care.

Cancer remains a priority area for the Government, and £1.5 billion has been invested on health research through the National Institute for Health and Care Research (NIHR). The NIHR’s research expenditure for all cancers was over £121.8 million for 2022/23, with more spent on cancer than any other disease group. The overall budget for research investment is agreed with the Treasury at the outset of each Spending Review period, and the Department regularly engages with the Chancellor of the Exchequer about a range of issues.

Our investments in cancer are pivotal to informing efforts to improve cancer prevention, treatment, and care.

The NIHR continues to encourage and welcome applications for research into any aspect of human health, including all cancer types. 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, health and care services, value for money, and scientific quality.