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 - 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.
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 - Shadow Minister (Science, Innovation and Technology)
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.
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.
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.
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.
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 plans he has to (a) increase awareness of Sickle Cell disease and (b) improve the training for dealing with that disease among (i) nurses and doctors in training and (ii) practising NHS nurses and doctors.
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.
Asked by: Catherine West (Labour - Hornsey and Friern Barnet)
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 implications for his policies of the findings of the No One's Listening report published by the all-party Parliamentary group on sickle cell and thalassaemia on 15 November 2021.
Answered by Maria Caulfield
While no formal assessment of the report has been made, it raised important issues around awareness amongst healthcare professionals, quality of care, inequalities, and variabilities in treatment for people living with sickle cell disease. The NHS Race and Health Observatory recently appointed a sickle cell expert to drive forwards work to tackle ethnic health inequalities.
To improve treatment for sickle cell disease, we have established ten specialist haemoglobinopathy coordinating centres and NHS England is deploying crizanlizumab, the first treatment for sickle cell disease in over 20 years. NHS England has also prioritised the development of a national haemoglobinopathy register to support clinicians in providing equitable, consistent treatment of patients. Additionally, a multi-stakeholder subgroup reporting to NHS England’s Haemoglobinopathy Clinical Reference Group has been formed with the remit to develop guidance and processes that will support patients and clinicians to manage pain relief in a hospital setting.
The United Kingdom Rare Diseases Framework outlined a national vision for improving the lives of those with rare diseases, including sickle cell disease. All four nations are now developing clear action plans to implement the Framework.
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 effect of covid-19 on the vulnerability of people living with (a) beta-thalassaemia, (b) sickle cell disease and (c) other haemoglobinopathies; and if he will make a statement.
Answered by Jo Churchill
NHS England, as part of its response to COVID-19, has worked closely with the Haemoglobinopathy Coordinating Centres (HCCs) across the country to provide an expert clinical panel to understand, assess and inform on the effect of COVID for patients with beta-thalassemia, sickle cell disease and other haemoglobinopathies. The HCC teams formed an HCC COVID-19 specific group to meet weekly from 20 April.
The HCC COVID-19 group are now able to collect real time COVID-19 specific data which has found that patients with haemoglobinopathies were affected by COVID-19. This was found to be in older patients and with other medical conditions, and was fully explored and published by the group. Further information is available at the following link:
https://haematologica.org/article/view/haematol.2020.259440
In response to the pandemic the clinical services have adapted the delivery of clinical practices to support patients safely. One example of this has been achieved through redesigning outpatient appointments to run through virtual clinics. The teams have been able to stay in touch with patients providing advice and support alongside clinical care throughout this period.
Asked by: Diana Johnson (Labour - Kingston upon Hull North and Cottingham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 16 September 2016 to Question 45638, on sickle cell disease screen positive babies, if he will publish the data for (a) England, (b) each Public Health England sub-region and (c) each antenatal screening provider for each year since 2009-10.
Answered by Seema Kennedy
Data on the number of sickle cell disease (SCD) babies born in England from 2010/11 are available to view here at the following link:
Data prior to 2010/11 is available regionally in the National Health Service Sickle Cell and Thalassaemia Screening Programme archived reports at the following link:
https://webarchive.nationalarchives.gov.uk/20150528151022/http://sct.screening.nhs.uk/data-reports
From 2015/16 data is published by four regions and is reflected in the attached table.
Data on the number of SCD babies born in England is publicly available. However, data for 2017/18 is not yet available but is due to be published at the end of 2019. Data for each antenatal screening provider is not available.
Asked by: Justin Madders (Labour - Ellesmere Port and Bromborough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will list all the services directly commissioned by NHS England.
Answered by Steve Brine
NHS England directly commissions the following services:
- Military and veteran health services;
- Health services for people in prisons (including youth offender institutions);
- Primary care services, although for general practitioners this is devolved to most clinical commissioning groups through primary care co-commissioning; and
- Specialised services. A list of the specialised services is attached.
NHS England also directly commissions the following public health services:
- Neonatal hepatitis B immunisation;
- Maternal Pertussis immunisation;
- Bacillus Calmette–Guéri vaccine (against tuberculosis and leprosy);
- Diptheria, tetanus, poliomyelitis, pertussis, haemophilus influenzae type B and hepatitis B immunisation;
- Rotavirus immunisation;
- Meningococcal C containing vaccine immunisation;
- Haemophilus influenzae type B immunisation;
- Pneumococcal immunisation;
- Measles, mumps and rubella immunisation;
- Human papillomavirus immunisation;
- Td/IPV vaccination (3-in-1 teenage booster);
- Seasonal influenza immunisation;
- Seasonal influenza immunisation for children;
- Shingles immunisation;
- NHS infectious diseases in pregnancy screening;
- NHS Fetal Anomaly Screening Programme - Screening for Down’s Syndrome, Edwards’ Syndrome and Patau’s Syndrome;
- NHS Fetal Anomaly Screening Programme – 18+0 to 20+6 week fetal anomaly scan;
- NHS Sickle Cell and Thalassaemia Screening;
- NHS Newborn Blood Spot Screening;
- NHS Newborn Hearing Screening;
- NHS Newborn and Infant Physical Examination Screening;
- NHS Diabetic eye screening;
- NHS Abdominal Aortic Aneurysm;
- Breast screening;
- Cervical screening;
- Bowel cancer screening;
- NHS bowel scope screening;
- Child Health Information Systems;
- Services for children and adults in secure and detained settings in England;
- Sexual assault referral centres;
- Meningococcal group B immunisation; and
- Human papillomavirus immunisation programme for men who have sex with men.