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 was the cost to the public purse of (a) research, (b) new treatments and (c) clinical care for (i) sickle cell disease and (ii) cystic fibrosis in the 2022-23 financial year.
Answered by Neil O'Brien
The Department funds health and care research through the National Institute for Health and Care Research (NIHR). In the 2022/23 financial year, so far, NIHR Programmes have spent nearly £1.7 million on sickle cell disease research and nearly £2.7 million on cystic fibrosis research.
There has also been one specialised clinical trial assured for sickle cell disease since the publication of the Excess Treatment Costs guidance, however, it is not possible to separate costs for patients on the trial from costs relating to standard care treatment.
New innovative treatments, such as Crizanlizumab for sickle cell disease, are subject to National Institute for Health and Care Excellence commercial confidentiality agreements. There have been no new treatments for cystic fibrosis commencing during 2022/23.
Regarding treatment costs, there is a range of care and treatments available for sickle cell disease, which is not split by diagnosis, and therefore cannot be separately identified. The following table shows total expenditure on drugs and clinical care for cystic fibrosis.
Year | High-cost drugs | Clinical care |
2021/22 (full year) | £438,042.681 | £127,585,986 |
2022/23 to M11 (Feb 23) | £470,103,672 | £120,136,690 |
Source: NHS Contract monitoring information
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 his Department will take steps to create an accessible portal to access sickle cell patient records and care plans.
Answered by Neil O'Brien
There are no current plans to create a portal to access sickle cell patients’ records and care plans.
It is essential that patients and their care teams have appropriate access to information relevant to their care. That is why the Department and NHS England have already published commitments to ensure all patients can access their health information, so they are empowered to make better decisions about their health, and to reduce the dependency on contacting general practices (GPs) for information that they could readily access. Giving patients access to their GP records data has been a long-standing GP contractual commitment, and one in five GPs now offer full prospective access to their patients. We remain committed to increasing the number of patients who can view their GP health record through the NHS App and other online services.
The National Haemoglobinopathy Registry is a confidential database of patients with red cell disorders living in the United Kingdom. It holds clinically important information related to patients’ health, treatment and complications, and is available to specialist haemoglobinopathy teams. The Haemoglobinopathies Clinical Reference Group is in the process of developing a standard care plan template, which can be used in a digital format. Options for making this widely available to patients and clinicians across the patient pathway are currently being explored.
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.
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, when he expects the National Institute for Health and Care Excellence to publish details of its plans to pilot a proportionate approach to Equality and Health Inequalities Assessment in its health technology evaluations.
Answered by Will Quince
Contributing to the reduction of health inequalities forms part of the National Institute of Care and Excellence (NICE) strategic ambition. As part of that work NICE has developed a framework to assess the impact of its guidance on equality and health inequalities which is available at the following link: https://www.nice.org.uk/about/what-we-do/nice-and-health-inequalities
The health technology evaluation programmes, for example, technology appraisals and highly specialised technologies, allow for the consideration of health inequalities, and the existing equalities impact assessment form is being expanded to include specific consideration of health inequalities in addition to protected characteristics, in line with the agreed framework. NICE’s approach will be proportionate to the importance of addressing health inequalities, the scope and potential for health technology evaluation recommendations to address health inequalities, and the resource and evidence implications for NICE and its stakeholders.
NICE also published a report to its board (item 9) in December 2022. This report detailed the progress on Equality and Health Inequalities Assessment and outlined next steps, including introducing this approach to appraisals of medicines and medical technologies. This report is available at the following link: https://www.nice.org.uk/get-involved/meetings-in-public/public-board-meetings/agenda-papers-december-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, what steps his Department is taking to address negative and racial stereotypes in healthcare settings.
Answered by Will Quince
Racism in any form is at odds with our National Health Service values. A key tool for tackling racism across the NHS is the Workforce Race Equality Standard. It measures NHS organisations against nine indicators which look at issues such as discrimination in the workplace, career progression, bullying and harassment and entry into disciplinary processes. Each employer is required to develop an action plan to tackle these challenges and this plan is considered by the Care Quality Commission as part of their well-led domain.
NHS England is also developing an NHS Equality, Diversity and Inclusion workforce plan which will include specific actions and expectations to embed inclusive and fair recruitment and promotion practices in organisations, to address under-representation and talent management across all protected characteristics.
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 review the process of administering pain relief for Sickle Cell patients.
Answered by Neil O'Brien
Specialist haemoglobinopathy teams and haemoglobinopathy co-ordinating centres are required to submit data via the Specialised Services Quality Dashboard on the percentage of patients given pain relief within 30 minutes of presentation with a sickle cell crisis, as per the National Institute for Health and Care Excellence guidelines. The data does not include patients attending non-specialist haemoglobinopathy providers and further work is required to improve the accuracy of the data submission before it can be used to assess compliance.
The National Sickle Pain Group, a sub-group of the Specialised Commissioning Haemoglobinopathies Clinical Reference Group, has produced guidance for hospitals to improve the care for sickle cell patients presenting with acute sickle pain and are working on an associated acute pain audit to measure the time to first analgesia universally across England.
NHS England has launched an end-to-end sickle cell clinical pathway review led by the Health Inequalities Improvement team. The end-to-end clinical pathway for patients with sickle cell disease is being reviewed to identify opportunities for delivering improvements.
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 help ensure Sickle Cell patients are treated in a timely way when attending hospital services.
Answered by Neil O'Brien
Specialist haemoglobinopathy teams and haemoglobinopathy co-ordinating centres are required to submit data via the Specialised Services Quality Dashboard on the percentage of patients given pain relief within 30 minutes of presentation with a sickle cell crisis, as per the National Institute for Health and Care Excellence guidelines. The data does not include patients attending non-specialist haemoglobinopathy providers and further work is required to improve the accuracy of the data submission before it can be used to assess compliance.
The National Sickle Pain Group, a sub-group of the Specialised Commissioning Haemoglobinopathies Clinical Reference Group, has produced guidance for hospitals to improve the care for sickle cell patients presenting with acute sickle pain and are working on an associated acute pain audit to measure the time to first analgesia universally across England.
NHS England has launched an end-to-end sickle cell clinical pathway review led by the Health Inequalities Improvement team. The end-to-end clinical pathway for patients with sickle cell disease is being reviewed to identify opportunities for delivering improvements.
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 his Department is taking steps to help ensure hospitals’ adhere to NICE guidelines to deliver pain relief to Sickle Cell patients within 30 minutes and to monitor patients beyond the first dose of pain relief.
Answered by Neil O'Brien
Specialist haemoglobinopathy teams and haemoglobinopathy co-ordinating centres are required to submit data via the Specialised Services Quality Dashboard on the percentage of patients given pain relief within 30 minutes of presentation with a sickle cell crisis, as per the National Institute for Health and Care Excellence guidelines. The data does not include patients attending non-specialist haemoglobinopathy providers and further work is required to improve the accuracy of the data submission before it can be used to assess compliance.
The National Sickle Pain Group, a sub-group of the Specialised Commissioning Haemoglobinopathies Clinical Reference Group, has produced guidance for hospitals to improve the care for sickle cell patients presenting with acute sickle pain and are working on an associated acute pain audit to measure the time to first analgesia universally across England.
NHS England has launched an end-to-end sickle cell clinical pathway review led by the Health Inequalities Improvement team. The end-to-end clinical pathway for patients with sickle cell disease is being reviewed to identify opportunities for delivering improvements.
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 merits of ring-fencing funding and resources to help ensure adequate staffing levels to treat sickle cell patients.
Answered by Neil O'Brien
No specific assessment has been made. NHS England has launched an end-to-end sickle cell clinical pathway review led by the Health Inequalities Improvement team. The end-to-end clinical pathway for patients with sickle cell disease is being reviewed to identify opportunities for delivering improvements. The review is at an early stage but has highlighted a number of opportunities to improve current services, including in relation to workforce, the digitalisation of care plans and general education of the public about the condition.
In addition, NHS England is undertaking an exercise to assess compliance of Specialist Haemoglobinopathy Teams and Haemoglobinopathy Coordinating Centres with the respective service specifications which are published on the Haemoglobinopathies Clinical Reference Group webpage.
Resources have been invested in raising awareness of sickle cell disease amongst medical staff. There have been recent improvements to the haematology medical curriculum, with sickle cell disease and thalassemia now described in the curriculum as core competencies. Health Education England (HEE) also provides a range of e-learning that includes sickle cell disease content. 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 standards. The Haemoglobinopathy Coordinating Centres also provide network development, leadership, learning and education across their network area.
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.