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Written Question
Blood Diseases: Medical Treatments
Wednesday 21st February 2024

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 - Minister of State (Department of Health and Social Care)

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.


Written Question
Blood Diseases: Medical Treatments
Monday 27th November 2023

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 - Minister of State (Department of Health and Social Care)

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 NICE appraises all newly licensed medicines and aims to publish draft guidance around the time of licensing wherever possible.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.


Written Question
Screening: Age
Wednesday 12th July 2023

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 - Parliamentary Under-Secretary (Department of Health and Social Care)

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.


Written Question
Sickle Cell Diseases: Training
Friday 17th March 2023

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

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.


Written Question
Sickle Cell Diseases: Health Services
Tuesday 14th March 2023

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

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.


Written Question
Sickle Cell Diseases: Health Services
Tuesday 14th March 2023

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 steps his Department is taking to increase awareness of Sickle Cell amongst healthcare professionals outside of London.

Answered by Neil O'Brien

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.


Written Question
Sickle Cell Diseases: Prescriptions
Wednesday 26th October 2022

Asked by: Baroness Benjamin (Liberal Democrat - Life peer)

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the All Party Parliamentary Group for Sickle Cell and Thalassaemia report No One's Listening: An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care, published on 15 November 2021, what assessment they have made of the impact of prescription charges for people with sickle cell disease.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

No specific assessment has been made and there are no current plans to review or extend the prescription charge medical exemptions list to include long term conditions, such as sickle cell disease.

Approximately 89% of prescription items are currently dispensed free of charge and there are a range of exemptions from prescription charges for which those with sickle cell disease may meet the eligibility criteria and be in receipt of free prescriptions. To support those who do not qualify for an exemption from prescription charges, the cost of prescriptions can be capped by purchasing a prescription pre-payment certificate, which can be paid for in instalments. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 per week. Additionally, those on a low income who do not qualify for an exemption from prescription charges can also seek help under the NHS Low Income Service, which provides help with health costs on an income-related basis.


Written Question
Sickle Cell Diseases: Training
Wednesday 19th October 2022

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, whether her Department is taking steps to help ensure that medical trainees receive specialist practical training to treat people with sickle cell disease in (a) London and (b) the South East.

Answered by Robert Jenrick

Each medical school sets its own undergraduate curriculum, which must meet the standards set by the General Medical Council (GMC) in its Outcomes for Graduates. The GMC would expect that, in fulfilling these standards, newly qualified doctors are able to identify, treat and manage any care needed, including relating to sickle cell disease.

Recent improvements have also 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, including London and the South East, 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.


Written Question
Sickle Cell Diseases: Analgesics
Tuesday 20th September 2022

Asked by: Stephen Timms (Labour - East Ham)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the extent of compliance in the NHS with NICE guidance that Sickle Cell patients should receive pain relief within 30 minutes of admittance to Accident and Emergency care; and if he will make a statement.

Answered by Will Quince

As part of this years’ World Sickle Cell Day, NHS England launched a new sickle cell disease awareness campaign on the signs and symptoms of sickle cell disease, aimed at urgent and emergency care staff and those living with the condition and their carers.

There have been recent improvements to the haematology medical curriculum, with understanding sickle cell disease and thalassemia now described in the curriculum as core competencies. Health Education England (HEE) provides e-learning which includes content on sickle cell disease. HEE has held discussions with the Royal Colleges of Pathology and Physicians to ensure this curriculum is deliverable to all four nations, in line with General Medical Council’s (GMC) standards. The Haemoglobinopathy Coordinating Centres also provide network development, leadership, learning and education.

The Sickle Cell Society and the All-Party Parliamentary Group on Sickle Cell and Thalassaemia report ‘No One’s Listening’ highlighted the lack of awareness of sickle cell disease among healthcare professionals. Officials are considering the report’s recommendations. NHS England estimates that awareness amongst accident and emergency medical and nursing staff, specifically of conditions such as sickle cell disease, is high across England and in areas where there is a higher prevalence of the condition. However, NHS England and other bodies continue with further awareness raising.

No specific assessment has been made regarding the extent of compliance to the National Institute for Health and Care Excellence’s (NICE) guidance on pain relief for sickle cell patients. The Care Quality Commission (CQC) considers evidence of how registered persons have met fundamental standards through its regulatory approach. The CQC will consider the processes providers have to ensure that best practice is implemented for quality standards, including NICE’s guidelines.


Written Question
Sickle Cell Diseases
Tuesday 20th September 2022

Asked by: Stephen Timms (Labour - East Ham)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what estimate he has made of the level of awareness among NHS ambulance and A and E staff of the need for urgency in dealing with a Sickle Cell crisis.

Answered by Will Quince

As part of this years’ World Sickle Cell Day, NHS England launched a new sickle cell disease awareness campaign on the signs and symptoms of sickle cell disease, aimed at urgent and emergency care staff and those living with the condition and their carers.

There have been recent improvements to the haematology medical curriculum, with understanding sickle cell disease and thalassemia now described in the curriculum as core competencies. Health Education England (HEE) provides e-learning which includes content on sickle cell disease. HEE has held discussions with the Royal Colleges of Pathology and Physicians to ensure this curriculum is deliverable to all four nations, in line with General Medical Council’s (GMC) standards. The Haemoglobinopathy Coordinating Centres also provide network development, leadership, learning and education.

The Sickle Cell Society and the All-Party Parliamentary Group on Sickle Cell and Thalassaemia report ‘No One’s Listening’ highlighted the lack of awareness of sickle cell disease among healthcare professionals. Officials are considering the report’s recommendations. NHS England estimates that awareness amongst accident and emergency medical and nursing staff, specifically of conditions such as sickle cell disease, is high across England and in areas where there is a higher prevalence of the condition. However, NHS England and other bodies continue with further awareness raising.

No specific assessment has been made regarding the extent of compliance to the National Institute for Health and Care Excellence’s (NICE) guidance on pain relief for sickle cell patients. The Care Quality Commission (CQC) considers evidence of how registered persons have met fundamental standards through its regulatory approach. The CQC will consider the processes providers have to ensure that best practice is implemented for quality standards, including NICE’s guidelines.