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1717948

registered interest
date	14/05/2024
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps her Department has taken to improve awareness of sickle cell disease among healthcare professionals.
tabling member constituency	Sheffield, Brightside and Hillsborough
tabling member printed	Gill Furniss
uin	26190
answer	answer is ministerial correction date of answer 20/05/2024 answer text <p>The Government is committed to improving the lives of those living with rare diseases such as sickle cell disease, and published the UK Rare Diseases Framework in January 2021, providing the high-level approach for rare diseases. The framework outlines future priorities including increasing awareness of rare diseases among healthcare professionals. In England we publish action plans annually to address these priorities. As part of this plan we committed to developing an innovative digital educational resource, ‘GeNotes’, providing healthcare professionals with relevant and concise information to support patient management, linking to the NHS Genomic Test Directories, and signposting to extended learning opportunities. This resource includes information on sickle cell disease and is updated regularly.</p><p>There have been recent improvements to the haematology medical curriculum, with understanding sickle cell disease now described in the curriculum as a core competency. The National Healthcare Inequalities Improvement Programme has launched several products to support NHS England in raising awareness of sickle cell disease among healthcare professionals including NHS England’s Can you tell it's Sickle Cell campaign and e-learning module and a communications campaign to raise awareness of existing NHS England arrangements to support people with sickle cell disease to save money on the costs of regular prescriptions.</p> answering member constituency Pendle answering member printed Andrew Stephenson question first answered 20/05/2024 14:17:22 answering member 4044 label Biography information for Andrew Stephenson
tabling member	4571 label Biography information for Gill Furniss

1602052

registered interest
date	07/03/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	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.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	160409
answer	answer is ministerial correction date of answer 14/03/2023 answer text <p>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.</p><p>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.</p><p>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.</p> answering member constituency Harborough answering member printed Neil O'Brien grouped question UIN 160408 160417 question first answered 14/03/2023 10:55:59 answering member 4679 label Biography information for Neil O'Brien
tabling member	4698 label Biography information for Janet Daby

1602053

registered interest
date	07/03/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	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.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	160410
answer	answer is ministerial correction date of answer 14/03/2023 answer text <p>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.</p><p>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.</p><p>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.</p> answering member constituency Harborough answering member printed Neil O'Brien grouped question UIN 160414 question first answered 14/03/2023 12:01:17 answering member 4679 label Biography information for Neil O'Brien
tabling member	4698 label Biography information for Janet Daby

1602054

registered interest
date	07/03/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	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.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	160411
answer	answer is ministerial correction date of answer 17/03/2023 answer text <p>There are no current plans to create a portal to access sickle cell patients’ records and care plans.</p><p>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.</p><p>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.</p> answering member constituency Harborough answering member printed Neil O'Brien question first answered 17/03/2023 14:48:04 answering member 4679 label Biography information for Neil O'Brien
tabling member	4698 label Biography information for Janet Daby

1602055

registered interest
date	07/03/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	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.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	160412
answer	answer is ministerial correction date of answer 14/03/2023 answer text <p>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.</p><p>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.</p><p>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.</p> answering member constituency Harborough answering member printed Neil O'Brien grouped question UIN 160413 question first answered 14/03/2023 12:07:26 answering member 4679 label Biography information for Neil O'Brien
tabling member	4698 label Biography information for Janet Daby

1602056

registered interest
date	07/03/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to help ensure that sickle cell services receive increased (a) staffing and (b) funding levels.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	160413
answer	answer is ministerial correction date of answer 14/03/2023 answer text <p>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.</p><p>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.</p><p>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.</p> answering member constituency Harborough answering member printed Neil O'Brien grouped question UIN 160412 question first answered 14/03/2023 12:07:26 answering member 4679 label Biography information for Neil O'Brien
tabling member	4698 label Biography information for Janet Daby

1602057

registered interest
date	07/03/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	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.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	160414
answer	answer is ministerial correction date of answer 14/03/2023 answer text <p>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.</p><p>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.</p><p>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.</p> answering member constituency Harborough answering member printed Neil O'Brien grouped question UIN 160410 question first answered 14/03/2023 12:01:18 answering member 4679 label Biography information for Neil O'Brien
tabling member	4698 label Biography information for Janet Daby

1547676

registered interest
date	02/12/2022
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether his Department intends to publish a Sickle Cell Action Plan.
tabling member constituency	St Albans
tabling member printed	Daisy Cooper
uin	101792
answer	answer is ministerial correction date of answer 13/12/2022 answer text <p>We are working with health and care organisations to explore how we can continue to protect the health of those with sickle cell disease.</p> answering member constituency Harborough answering member printed Neil O'Brien question first answered 13/12/2022 15:26:47 answering member 4679 label Biography information for Neil O'Brien
tabling member	4769 label Biography information for Daisy Cooper

1547677

registered interest
date	02/12/2022
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps his Department is taking to mitigate the impact of the rising cost of living on people with chronic conditions such as sickle cell disease.
tabling member constituency	St Albans
tabling member printed	Daisy Cooper
uin	101793
answer	answer is ministerial correction date of answer 12/12/2022 answer text <p>The Government announced £37 billion for measures to address the cost of living, including £15 billion for the most vulnerable households. Those in receipt of extra-costs disability benefits such as the Personal Independence Payment or Disability Living Allowance have received a Disability Cost of Living Payment of £150.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 12/12/2022 11:20:03 answering member 4527 label Biography information for Helen Whately
tabling member	4769 label Biography information for Daisy Cooper

1523036

registered interest
date	17/10/2022
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Sickle Cell Diseases: Health Services
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether her Department is taking steps to increase the number of staff involved in the care of patients with Sickle Cell.
tabling member constituency	Lewisham East
tabling member printed	Janet Daby
uin	64316
answer	answer is ministerial correction date of answer 25/10/2022 answer text <p>NHS England has oversight of workforce at a national level while decisions are made by each trust.</p><p>In 2021/22, NHS England funded updates to the National Haemoglobinopathy Registry, which supports clinical teams in the treatment of patients in England with sickle cell disease and other haemoglobinopathies. Patient care plans will be launched in 2022/23, including the development of a portal enabling patients to access and share their medical records with any clinical teams in England.</p><p>NHS England has also launched a sickle cell clinical pathway review with contributions from patients living with sickle cell disease. Recommendations from the review relating to workforce, digitalisation of care plans and educating the public about the condition will be made to the Executive Quality Group in NHS England at end of November 2022.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 64317 64318 question first answered 25/10/2022 15:54:12 answering member 4423 label Biography information for Will Quince
tabling member	4698 label Biography information for Janet Daby