Sickle Cell Diseases: Research

Department of Health and Social Care written question – answered am ar 28 Mawrth 2024.

Danfonwch hysbysiad imi am ddadleuon fel hyn

Photo of Andrew Rosindell Andrew Rosindell Ceidwadwyr, Romford

To ask the Secretary of State for Health and Social Care, what steps she has taken to support (a) research into and (b) treatment of sickle cell disease in (i) England and (ii) Romford constituency.

Photo of Andrew Stephenson Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)

We’re working hard to support research, and provide the best possible care to those living with sickle cell disease (SCD) across the country. The Department funds health and care research through the National Institute for Health and Care Research (NIHR). Over the past five financial years, the NIHR has invested more than £8 million in funding and support for SCD research.

NHS Blood and Transplant (NHSBT) is the largest provider of apheresis services, a blood transfusion used to treat SCD. NHSBT will be delivering projects over the next 12 months that will increase both nursing capacity and the physical space in which apheresis occurs. We are also working to increase Ro subtype blood donation numbers, the blood type used to treat SCD, identify opportunities to improve clinical pathways, and deliver world-leading treatments, such as the new blood matching genetic test announced by NHS England earlier this year, which will reduce the risk of side effects and offer more personalised care.

NHS England’s Chief Executive Officer has committed to improving the treatment and outcomes of patients with SCD, and has commissioned a Sickle Cell Pathway Quality Improvement work package. A quality improvement review of existing processes has led to a range of improvements including awareness, education, and training of both patients and professionals.

The National Healthcare Inequalities Improvement Programme (HiQiP) has recently introduced a number of initiatives as part of the wider aim of tackling inequalities for people living with SCD. This includes: piloting of urgent and emergency department bypass units in London and Manchester, which will ensure people with SCD with an uncomplicated vaso-occlusive crisis are assessed and given pain relief in a timely manner; the provision of a credit card sized Sickle Cell Alert Card to all people with SCD, to alert medical and clinical staff that the carrier is a registered SCD patient and that they should be managed as a medical emergency; a London wide commissioning for the design and upload of a patient care record onto an interoperable digital platform which, when fully operational, will give clinicians and medical personnel in different regions access to a patient’s personalised care and analgesia record, removing ambiguity on effective treatment; and several products to support the above, including a communications campaign to raise awareness of existing NHS England arrangements to support people with SCD to save money on the costs of regular prescriptions, as well as the Can you tell it's Sickle Cell campaign and an e-learning module, both from NHS England. Further information on the Can you tell it's Sickle Cell campaign and the e-learning module is available respectively, at the following links:

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