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 Wood Green)
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 - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
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 - Minister of State (Department for Work and Pensions)
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)
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 Neston)
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.
Asked by: Lord Boateng (Labour - Life peer)
Question to the Department for Work and Pensions:
To ask Her Majesty's Government when they last issued any guidance to Department for Work and Pensions disability assessors on the functional effects of thalassaemia and sickle cell disease on claimants; and whether they have any plans to address this issue specifically in the training programme undertaken by assessors.
Answered by Baroness Buscombe
Guidance on Sickle Cell Disease, including the functional effects, was developed and first issued to Centre for Health and Disability Assessments Healthcare Professionals in June 2014. It is quality assured by external specialist practitioners and regularly updated. It was most recently reissued on 18 December 2017.
The Personal Independence Payment assessment is not a medical assessment and there is no requirement for the Disability Assessor to diagnose a condition and recommend treatment options. We do not issue guidance on specific clinical conditions to Capita and Independent Assessment Services. Their Disability Assessors are trained to be experts in disability analysis and have knowledge of the functional effects of a wide range of health conditions. Each Provider develops their own guidance as part of their ongoing training
All Healthcare Professionals have access to a range of resources as well as experienced clinicians to support them in assessing claimants with conditions that they may not be familiar with.
We work extensively with our Assessment Providers to make improvements to guidance and training to ensure that all claimants receive objective, accurate and high quality assessments and have agreed to work directly with the Sickle Cell Society and Thalassemia Society to review our current materials and approach.
Assessment Providers continue to engage with medical experts, charities and relevant stakeholders to strengthen, review and update their training programmes.
Asked by: Lord Boateng (Labour - Life peer)
Question to the Department for Work and Pensions:
To ask Her Majesty's Government what assessment they have made, in the light of the recent sickle cell and thalassaemia APPG Report How did you contract that?, of the suitability of the Personal Independence Payment Form 2 for the assessment of persons living with thalassaemia and sickle cell disease.
Answered by Baroness Buscombe
Personal Independence Payment (PIP) claims are not condition based but are assessed on how a claimant’s long-term disability or health condition affects their day-to-day life and on the majority of days over the period of a year. The PIP2 questionnaire, “How your disability affects you”, is the first step in gathering detailed information about the needs arising from an individual’s health condition or disability. The form has been designed to allow claimants to tell us, in their own words, how their health condition or disability impacts them on a day-to-day basis. The questionnaire has a mixture of tick boxes and free text boxes allowing claimants to add as much or as little detail as they wish. We also ask claimants to send in any additional information or evidence to support their claim. Although the PIP2 is a standard template, we can assure you that it has been carefully designed to capture information on people’s needs regardless of their health condition or disability.
Asked by: Lord Boateng (Labour - Life peer)
Question to the Department for Work and Pensions:
To ask Her Majesty's Government what assessment they have made of the extent to which Department for Work and Pensions disability assessors are qualified to make judgements in relation to people living with thalassaemia and sickle cell disease.
Answered by Baroness Buscombe
All Healthcare Professionals carrying out assessments are medically qualified and highly-trained practitioners in their own field. They are subject to a rigorous recruitment process followed by a comprehensive training programme in disability assessment.
The assessment is not a medical assessment requiring the Healthcare Professional to diagnose a condition and recommend treatment options. The focus is on ensuring Healthcare Professionals are experts in disability analysis with knowledge of the likely functional effects of a wide range of health conditions.
While preparing to undertake an assessment, Healthcare Professionals can access a wide range of clinical resources to research any medical conditions that they are unfamiliar with. In addition, they read in detail any further evidence that has been supplied by the claimant’s GP or specialist clinical team.
Asked by: Jim Cunningham (Labour - Coventry South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what the take-up rate for sickle cell disease and thalassaemia screening for pregnant women in (a) the West Midlands and (b) Coventry was in 2017.
Answered by Jackie Doyle-Price
Screening for sickle cell and thalassaemia are carried out jointly as a blood test. The programme identifies people who are genetic carriers for sickle cell, thalassaemia and other haemoglobin disorders.
Between 1 April 2016 and 31 March 2017 Coventry and Warwickshire NHS Trusts had 5,925 women tested out of 5,989 eligible women (98.9% uptake).
Between 1 April 2016 and 31 March 2017 the West Midlands had 57,578 women tested out of 58,093 eligible women (99.1% uptake).
During 2016/17 the national average for screening uptake in England was 99.3%.
Further information is available at:
NHS England is responsible for commissioning antenatal screening services to meet programme standards including coverage. NHS England is working with providers to help identify and address any issues and is committed to improving coverage and reducing morbidity from this condition.
Asked by: Jonathan Ashworth (Labour (Co-op) - Leicester South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, when the last impact assessment was undertaken of the prescription charge medical exemption list; if he will publish that impact assessment; and whether that impact assessment makes reference to the disproportionate effect on certain groups of Sickle Cell or Lupus.
Answered by Steve Brine
The Department has not undertaken a formal impact assessment on the potential cost of eliminating or reducing prescription charges for people with long-term medical conditions not already covered by a medical exemption. However, the Prescription Charges Review (the Review) undertaken by Professor Sir Ian Gilmore on behalf of the Department, and published in 2010, estimated that extending exemption, at that time, to all those with a long-term condition would lead to a loss in revenue of between £360 and £430 million. This document is publicly available at:
https://www.gov.uk/government/publications/prescription-charges-review-the-gilmore-report
The Review does not make specific reference to sufferers of lupus, however, the All Party Parliamentary Group on Sickle Cell and Thalassaemia and the Sickle Cell Society provided written evidence to the Review.