Asked by: Peter Fortune (Conservative - Bromley and Biggin Hill)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, how much Government funding there was into sickle cell research in 2023-24; and which public bodies provided that funding.
Answered by Feryal Clark
DSIT funds medical research through UK Research and Innovation (UKRI) and the Department of Health and Social Care funds research through the National Institute for Health and Care Research (NIHR).
UKRI’s Medical Research Council (MRC) supports the best scientific research to improve human health, with work ranging from molecular level science to public health medicine. MRC plays a key role in funding underpinning research which may not be attributable to a specific disease but will benefit medical research more generally.
UKRI delivers a substantial portfolio of researcher-led projects. This includes a wide variety of areas including physiological, biological and mechanistic aspects that are applicable to many diseases, disorders and other conditions.
Details of UKRI and NIHR funding on specific areas is provided in the table below:
| UKRI funding committed in 2023 and 2024 to date | NIHR funding in FY 2023/24 |
Hodgkin Lymphoma | UKRI did not commit any funding for Hodgkin lymphoma research in 2023-24. | NIHR has not allocated funding for research concerning Hodgkin Lymphoma during financial year 2023-24. |
Myelodysplastic Syndrome | UKRI did not commit any new funding for Myelodysplastic Syndrome research in 2023-24. | NIHR has not allocated funding for research concerning Myelodysplastic Syndrome during financial year 2023-24. |
Stem Cell | The total commitment in 2023/24 from UKRI for research concerning Stem Cells was £63,966,085 for 69 awards (14 awards from BBSRC; 4 awards from EPSRC; 6 awards from Innovate UK; 27 awards from MRC with a value of £28,347,161; 3 awards from NC3Rs; 15 awards from centrally managed UKRI schemes). | NIHR has not funded any research concerning Stem Cells during financial year 2023-24. |
Haemophilia | UKRI did not commit any new funding for Haemophilia research in 2023-24. | NIHR allocated £154,000 for high-quality research concerning Haemophilia in 2023-24 |
Sickle Cell | UKRI did not commit any new funding for Sickle Cell research in 2023-24. | NIHR allocated £336,368 for high-quality research concerning Cickle Cell research in the financial year 2023-24 |
Thalassaemia | UKRI did not commit any new funding for Thalassaemia research in 2023-24. | NIHR allocated £158,900 for high-quality research concerning Thalassaemia in the financial year 2023-24 |
Human Immunodeficiency Disease | The total commitment from UKRI in 2023/24 was £13,983,734 for 13 awards (1 award from EPSRC; 8 awards from MRC with a value of £10,800,617 for Human Immunodeficiency Virus (HIV) research; 4 awards from centrally managed UKRI schemes). | NIHR allocated £5,620,876 for high quality research concerning Human Immunodeficiency Disease (HIV and AIDS) in 2023-24 |
Vitamin B12 deficiency | The total commitment across UKRI in 2023-24 for Vitamin B12 deficiency research was £470,348 for 2 awards from Innovate UK. | NIHR has not allocated any funds concerning Vitamin B12 Deficiency during financial year 2023-24. |
Neural Tube Defect Prevention | The total commitment from UKRI in 2023/24 for research concerning Neural Tube Defect Prevention was £4,289,077 for 4 awards (2 awards from MRC with a value of £3,949,400; 1 award from ESRC; 1 award from centrally managed UKRI schemes). | NIHR has not allocated any funds concerning Neural Tube Defect Prevention research during the financial year of 2023-24. |
Malaria vaccination | The total commitment from UKRI in 2023/24 for research concerning Malaria vaccination was £11,697,976 for 7 awards (2 awards from MRC with a value of £3,387,100; 5 awards from centrally managed UKRI schemes). | NIHR has not allocated any funds concerning Malaria Vaccination research during the financial year of 2023-24. The NIHR Oxford Biomedical Research Centre supports the development and testing of malaria vaccines, such as the R21/Matrix-M malaria vaccine. |
Asked by: Peter Fortune (Conservative - Bromley and Biggin Hill)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, how much Government funding there was into neural tube defect prevention research in 2023-24; and which public bodies provided that funding.
Answered by Feryal Clark
DSIT funds medical research through UK Research and Innovation (UKRI) and the Department of Health and Social Care funds research through the National Institute for Health and Care Research (NIHR).
UKRI’s Medical Research Council (MRC) supports the best scientific research to improve human health, with work ranging from molecular level science to public health medicine. MRC plays a key role in funding underpinning research which may not be attributable to a specific disease but will benefit medical research more generally.
UKRI delivers a substantial portfolio of researcher-led projects. This includes a wide variety of areas including physiological, biological and mechanistic aspects that are applicable to many diseases, disorders and other conditions.
Details of UKRI and NIHR funding on specific areas is provided in the table below:
| UKRI funding committed in 2023 and 2024 to date | NIHR funding in FY 2023/24 |
Hodgkin Lymphoma | UKRI did not commit any funding for Hodgkin lymphoma research in 2023-24. | NIHR has not allocated funding for research concerning Hodgkin Lymphoma during financial year 2023-24. |
Myelodysplastic Syndrome | UKRI did not commit any new funding for Myelodysplastic Syndrome research in 2023-24. | NIHR has not allocated funding for research concerning Myelodysplastic Syndrome during financial year 2023-24. |
Stem Cell | The total commitment in 2023/24 from UKRI for research concerning Stem Cells was £63,966,085 for 69 awards (14 awards from BBSRC; 4 awards from EPSRC; 6 awards from Innovate UK; 27 awards from MRC with a value of £28,347,161; 3 awards from NC3Rs; 15 awards from centrally managed UKRI schemes). | NIHR has not funded any research concerning Stem Cells during financial year 2023-24. |
Haemophilia | UKRI did not commit any new funding for Haemophilia research in 2023-24. | NIHR allocated £154,000 for high-quality research concerning Haemophilia in 2023-24 |
Sickle Cell | UKRI did not commit any new funding for Sickle Cell research in 2023-24. | NIHR allocated £336,368 for high-quality research concerning Cickle Cell research in the financial year 2023-24 |
Thalassaemia | UKRI did not commit any new funding for Thalassaemia research in 2023-24. | NIHR allocated £158,900 for high-quality research concerning Thalassaemia in the financial year 2023-24 |
Human Immunodeficiency Disease | The total commitment from UKRI in 2023/24 was £13,983,734 for 13 awards (1 award from EPSRC; 8 awards from MRC with a value of £10,800,617 for Human Immunodeficiency Virus (HIV) research; 4 awards from centrally managed UKRI schemes). | NIHR allocated £5,620,876 for high quality research concerning Human Immunodeficiency Disease (HIV and AIDS) in 2023-24 |
Vitamin B12 deficiency | The total commitment across UKRI in 2023-24 for Vitamin B12 deficiency research was £470,348 for 2 awards from Innovate UK. | NIHR has not allocated any funds concerning Vitamin B12 Deficiency during financial year 2023-24. |
Neural Tube Defect Prevention | The total commitment from UKRI in 2023/24 for research concerning Neural Tube Defect Prevention was £4,289,077 for 4 awards (2 awards from MRC with a value of £3,949,400; 1 award from ESRC; 1 award from centrally managed UKRI schemes). | NIHR has not allocated any funds concerning Neural Tube Defect Prevention research during the financial year of 2023-24. |
Malaria vaccination | The total commitment from UKRI in 2023/24 for research concerning Malaria vaccination was £11,697,976 for 7 awards (2 awards from MRC with a value of £3,387,100; 5 awards from centrally managed UKRI schemes). | NIHR has not allocated any funds concerning Malaria Vaccination research during the financial year of 2023-24. The NIHR Oxford Biomedical Research Centre supports the development and testing of malaria vaccines, such as the R21/Matrix-M malaria vaccine. |
Asked by: Peter Fortune (Conservative - Bromley and Biggin Hill)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, how much Government funding there was into malaria vaccination research in 2023-24; and which public bodies provided that funding.
Answered by Feryal Clark
DSIT funds medical research through UK Research and Innovation (UKRI) and the Department of Health and Social Care funds research through the National Institute for Health and Care Research (NIHR).
UKRI’s Medical Research Council (MRC) supports the best scientific research to improve human health, with work ranging from molecular level science to public health medicine. MRC plays a key role in funding underpinning research which may not be attributable to a specific disease but will benefit medical research more generally.
UKRI delivers a substantial portfolio of researcher-led projects. This includes a wide variety of areas including physiological, biological and mechanistic aspects that are applicable to many diseases, disorders and other conditions.
Details of UKRI and NIHR funding on specific areas is provided in the table below:
| UKRI funding committed in 2023 and 2024 to date | NIHR funding in FY 2023/24 |
Hodgkin Lymphoma | UKRI did not commit any funding for Hodgkin lymphoma research in 2023-24. | NIHR has not allocated funding for research concerning Hodgkin Lymphoma during financial year 2023-24. |
Myelodysplastic Syndrome | UKRI did not commit any new funding for Myelodysplastic Syndrome research in 2023-24. | NIHR has not allocated funding for research concerning Myelodysplastic Syndrome during financial year 2023-24. |
Stem Cell | The total commitment in 2023/24 from UKRI for research concerning Stem Cells was £63,966,085 for 69 awards (14 awards from BBSRC; 4 awards from EPSRC; 6 awards from Innovate UK; 27 awards from MRC with a value of £28,347,161; 3 awards from NC3Rs; 15 awards from centrally managed UKRI schemes). | NIHR has not funded any research concerning Stem Cells during financial year 2023-24. |
Haemophilia | UKRI did not commit any new funding for Haemophilia research in 2023-24. | NIHR allocated £154,000 for high-quality research concerning Haemophilia in 2023-24 |
Sickle Cell | UKRI did not commit any new funding for Sickle Cell research in 2023-24. | NIHR allocated £336,368 for high-quality research concerning Cickle Cell research in the financial year 2023-24 |
Thalassaemia | UKRI did not commit any new funding for Thalassaemia research in 2023-24. | NIHR allocated £158,900 for high-quality research concerning Thalassaemia in the financial year 2023-24 |
Human Immunodeficiency Disease | The total commitment from UKRI in 2023/24 was £13,983,734 for 13 awards (1 award from EPSRC; 8 awards from MRC with a value of £10,800,617 for Human Immunodeficiency Virus (HIV) research; 4 awards from centrally managed UKRI schemes). | NIHR allocated £5,620,876 for high quality research concerning Human Immunodeficiency Disease (HIV and AIDS) in 2023-24 |
Vitamin B12 deficiency | The total commitment across UKRI in 2023-24 for Vitamin B12 deficiency research was £470,348 for 2 awards from Innovate UK. | NIHR has not allocated any funds concerning Vitamin B12 Deficiency during financial year 2023-24. |
Neural Tube Defect Prevention | The total commitment from UKRI in 2023/24 for research concerning Neural Tube Defect Prevention was £4,289,077 for 4 awards (2 awards from MRC with a value of £3,949,400; 1 award from ESRC; 1 award from centrally managed UKRI schemes). | NIHR has not allocated any funds concerning Neural Tube Defect Prevention research during the financial year of 2023-24. |
Malaria vaccination | The total commitment from UKRI in 2023/24 for research concerning Malaria vaccination was £11,697,976 for 7 awards (2 awards from MRC with a value of £3,387,100; 5 awards from centrally managed UKRI schemes). | NIHR has not allocated any funds concerning Malaria Vaccination research during the financial year of 2023-24. The NIHR Oxford Biomedical Research Centre supports the development and testing of malaria vaccines, such as the R21/Matrix-M malaria vaccine. |
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what conversations they have had with NHS England about the continuation of the sickle cell improvement programme beyond its initial two-year pilot.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The NHS England National Healthcare Inequalities Improvement Programme set up a quality improvement work programme to improve outcomes and quality of life in sickle cell disorder (SCD). Several work programmes have been commissioned to improve the care pathway. These include the launch of two-year pilots to provide services to persons requiring emergency care for an uncomplicated vaso-occlusive crisis, the provision of digital care plans, a programme of work to improve the safety of blood transfusions and various education programmes. Seven SCD Emergency Department Bypass pilots, which enable care provision of emergency pain relief away from an emergency department, have been commissioned and are in various phases of mobilisation and implementation. An evaluation of the pilots has also been commissioned via the National Institute for Health and Care Research and is expected to report during 2025/26. This will inform future decisions around implementation and continued improvements across the whole care pathway for persons with and sickle cell disorder and thalassaemia.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to take steps to prioritise improvement of care for (a) rare blood disorders and (b) other rare and ultra-rare conditions.
Answered by Andrew Gwynne
Improving the lives of people living with rare and ultra-rare conditions, such as rare blood disorders, continues to be a health priority. We remain committed to the UK Rare Diseases Framework, which highlights four priorities to improve the lives of people with rare diseases, including better coordination of care, and improved access to specialist care, treatment, and drugs.
We’re working hard to provide the best possible care to those living with rare blood disorders, such as sickle cell disease and thalassaemia. NHS England’s priorities for the improvement of care for rare blood disorders includes an established programme of work to improve clinical pathways and care for people with sickle cell disease, which has recently been expanded to include thalassaemia. We are also boosting Ro subtype blood donation numbers and delivering world-leading treatments, such as the new blood matching genetic test which will reduce the risk of side effects and offer more personalised care.
NHS England commissions services for patients with Thrombotic Thrombocytopenia Purpura across 11 hospitals. This is an aggressive blood clotting disease which is difficult to diagnose and has a high mortality rate if left untreated. In the acute phase of the disease patients need rapid access to specialist care. This is a lifelong condition, and patients receive ongoing monitoring by the multidisciplinary team, shared care with local hospitals, and access to specialist drugs.
The National Health Service is reviewing and updating the service specification for haemophilia care through the Blood Disorders Clinical Reference Group, alongside a new quality dashboard that will enable commissioners to monitor the quality of the services in their areas, benchmarked against other services across the country.
Asked by: George Howarth (Labour - Knowsley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what discussions she has had with (a) NICE and (b) NHS England on encouraging the adoption of new treatments for (i) sickle cell disease and (ii) beta-thalassaemia.
Answered by Andrew Stephenson
The Department regularly discusses a range of issues with colleagues in NHS England and the National Institute for Health and Care Excellence (NICE), related to patient access to new treatments.
The NICE appraises all new licensed medicines, and its recommendations are developed independently in line with its established methods and processes, on the basis of an assessment of the available evidence, and through extensive engagement with stakeholders. NHS England is legally required to fund treatments recommended in NICE technology appraisal guidance.
Asked by: Janet Daby (Labour - Lewisham East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what discussions she has had with NHS England and the National Institute for Health and Care Excellence on access to new treatments for sickle cell disease and beta thalassaemia.
Answered by Andrew Stephenson
The Department regularly discusses a range of issues with colleagues in NHS England and the National Institute for Health and Care Excellence (NICE) related to patient access to effective new treatments. NICE appraises all newly licensed medicines and aims to publish draft guidance around the time of licensing wherever possible. NICE works closely with the Medicines and Healthcare products Regulatory Agency and NHS England to ensure that there is a joined-up, timely approach to supporting access to new treatments for National Health Service patients.
NICE is currently appraising exagamglogene autotemcel for treating transfusion-dependent beta-thalassaemia and sickle cell disease, and expects to publish final guidance in March and April 2024 respectively.
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what are the age limits on each of the NHS screening programmes and the justification for each limit.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
All National screening programmes are introduced based on recommendations made by the UK National Screening Committee (UK NSC). The UK NSC assesses and evaluates the evidence to offer screening when it will offer more good than harm. Screening age ranges are selected based on the range where the evidence supports that balance.
The National Health Service breast screening programme invites eligible women to be screened every three years from the age of 50 up to their 71st birthday.
The NHS bowel screening programme invited men and women every two years from ages 60 to 74 years old. The programme is expanding to make it available to everyone aged 50 to 59 years old. This is happening gradually over four years and started in April 2021.
The NHS cervical screening programme invites people with a cervix between the ages of 25 and 49 for screening every three years, whilst people aged 50 to 64 receive an invitation every five years.
The NHS abdominal aortic aneurysm screening programme offers men a screening the year they turn 65.
The NHS diabetic eye screening programme is offered to anyone with diabetes who is 12 years old or over. Those eligible are invited for an annual screening.
The NHS targeted lung cancer screening programme that has been recently announced will invite people aged 55 to 74 identified as being at high risk of lung cancer for screening.
For antenatal screening programmes, pregnant women are invited early for screening once the pregnancy has been confirmed. This includes the NHS foetal anomaly screening programme and NHS infectious diseases in pregnancy.
Screening for newborns is also offered early at a time when conditions can be detected and where early treatment can improve the baby’s health and prevent severe disability or even death. Newborn screening programmes include the NHS newborn blood spot screening programme, the NHS newborn hearing screening programme, the NHS newborn and infant physical examination screening programme and the NHS sickle cell and thalassaemia screening programme.
Asked by: Janet Daby (Labour - Lewisham East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential impact of redeploying staff to other parts of country on the ability of medical students to participate in sickle cell specialist practical training.
Answered by Neil O'Brien - Shadow Minister (Policy Renewal and Development)
No specific assessment has been made and there are no plans to do so. The standard of training for health care professionals is the responsibility of the health care independent statutory regulatory bodies such as the General Medical Council, the Nursing and Midwifery Council and Health and Care Professions Council, which are independent statutory bodies. These have the general function of promoting high standards of education and co-ordinating all stages of education to ensure that health and care students and newly qualified healthcare professionals are equipped with the knowledge, skills and attitudes essential for professional practice.
The healthcare regulators set the standards expected at undergraduate level and approve courses. In so doing, they play an important role in setting out the knowledge, skills and behaviours that healthcare professionals must be able to demonstrate. The Higher Education Institutes write and teach the curricula content that enables their students to meet the regulators standards.
Recent improvements have been made to the postgraduate haematology medical curriculum, with understanding sickle cell disease and thalassemia now described in the curriculum as core competencies.
Additional training is also available for medical trainees across England to receive specialist training to treat people with sickle cell disease. This includes an e-learning programme delivered by Health Education England which has specific courses such as the NHS Screening Programme and includes the Sickle Cell and Thalassaemia Screening Programme.
Asked by: Janet Daby (Labour - Lewisham East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the ability of NHS staff to identify when a patient is undergoing a Sickle Cell crisis.
Answered by Neil O'Brien - Shadow Minister (Policy Renewal and Development)
No assessment has been made. NHS England and Health Education England (HEE) have invested in raising awareness of sickle cell disease amongst medical staff. NHS England’s Health Inequalities improvement team launched a sickle cell awareness campaign ‘Can you tell it’s sickle cell’ in June 2022 and continues to promote and monitor its reach. A sickle cell disorder e-learning resource has also been developed and is now available across the National Health Service.
There have been recent improvements to the haematology medical curriculum, with understanding sickle cell and thalassaemia now described in the curriculum as core competencies. HEE has additionally held discussions with the Royal Colleges of Pathology and Physicians to ensure that this curriculum is deliverable across all four nations, in line with General Medical Council standards.
In addition to the above e-learning, HEE now provides two ‘e-Learning for healthcare’ programmes with sickle cell content, NHS Screening Programmes, including the Sickle Cell and Thalassaemia Screening Programme and the Maternity Support Worker Programme.