Health chiefs have launched a review aimed at addressing the “poor care” experienced by many children and young individuals with sickle cell disease as they transition to adult healthcare providers. The NHS Race and Health Observatory, in collaboration with the Sickle Cell Society charity, is set to improve the transition process for patients entering adult care. It is estimated that approximately 300 babies are born with sickle cell disease in the UK each year, with young patients often encountering inadequate care in non-specialist settings during the shift to adult services.
Professor Habib Naqvi, the chief executive of the NHS Race and Health Observatory, highlighted the importance of enhancing trust within the care pathway to bridge gaps in care for patients with sickle cell disorder. The aim is to learn from successful transitions in other healthcare areas and ensure top-quality, patient-centred care is provided during a vulnerable stage in their lives. The programme seeks to offer support to young patients, manage their pain effectively, and prevent long-lasting harmful consequences during the transition.
Sickle cell disease is an inherited, potentially life-threatening condition more prevalent among Black individuals, affecting around 15,000 people in England. The disease causes severe pain, infections, strokes, chronic fatigue, delayed growth, and progressive organ damage. Patients and advocates have long criticised the lack of awareness and substandard care for those affected by sickle cell disease in the UK.
A recent report highlighted a shortage of specialist sickle cell nurses, placing lives at risk. The 2021 all-party parliamentary group (APPG) report on sickle cell and thalassaemia identified significant care deficiencies in acute services and evidence of racially influenced attitudes. The new research will focus on capturing young patients’ experiences and treatment perspectives that are often overlooked, empowering them to handle the condition effectively as adults.
The initiative will concentrate on addressing the long-term needs of young patients from ages 12 to 18, evaluating optimal apps, policy initiatives, and gathering feedback to improve care. Engagement with healthcare professionals, specialists, patients, families, and carers will be crucial for gathering insights during hospital visits and A&E admissions. This effort follows concerns raised by the parents of a 22-year-old patient, Darnell Smith, who tragically passed away due to hospital failings, highlighting systemic challenges in the care provided to sickle cell patients.
John James, chief executive of the Sickle Cell Society, sees this review as a significant opportunity to transform the experiences of young people with sickle cell disease. The NHS Race and Health Observatory, established in 2020, strives to offer evidence-based recommendations to address inequalities affecting ethnic minority patients and healthcare communities. Professor Bola Owolabi, NHS director for healthcare inequalities, expressed the NHS’s commitment to improving care for sickle cell patients through innovative treatments and comprehensive support services.
Enhanced efforts in transitioning young sickle cell patients to adult care are crucial to ensuring they receive the necessary support and resources for managing their condition effectively. By addressing shortcomings in the care pathway and promoting better coordination between paediatric and adult services, health authorities aim to enhance the overall well-being and quality of life for individuals living with sickle cell disease in the UK.