Observatory commissions pioneering work to tackle barriers faced by children with sickle cell disease
Barriers faced by children and young people living with sickle cell as they transition from NHS paediatric to adult health care providers are set to be explored and tackled.
The NHS Race and Health Observatory has today, 30 September, announced that it will be working with the Sickle Cell Society charity to conduct research and design practical resources aimed at improving sickle cell transition care and quality of life.
Young people with sickle cell disease often experience poor care in non-specialist settings during transition. This action research programme will capture their often-ignored experiences and views on treatment plans to ensure they feel supported and empowered to deal with the condition as adults.
In the UK, it is estimated that around 300 babies are born with sickle cell disease annually. Focused on addressing the long-term needs of young patients, typically from ages of 12 and 13 up to the age of 18, the 12-month programme will consider a broad range of tangible recommendations and practical solutions.
This will include evaluating new and existing optimal apps and online resources, effective policy Initiatives, and anecdotal feedback from face-to-face interactions, backed by engagement with health bodies, red cell specialists, patients, their families and carers during visits to hospital wards and A&E admissions.
Professor Habib Naqvi, chief executive, NHS Race and Health Observatory, said:
“The insights from this work will significantly impact the future of young people living with sickle cell disease. The transition period is a challenging time for young people and by improving trust within the care pathway we can tackle gaps in care, learn from successful outcomes in transition from other disorders and initiatives, and ensure excellent patient-centered care is provided.
“It’s vital that patients with sickle cell disorder, and other chronic conditions, receive optimal transition from paediatric to adult services from specialists and general hospital staff at, what is, a vulnerable stage in life. This programme will help to ensure young patients are well-supported and their pain is managed effectively during the process to avoid lasting harmful consequences. This innovative programme is aligned with our broader efforts to address long-standing disparities in sickle cell care provision.”
The research project will also consider:
- Evaluation of interventions aimed at improving transition care with respect to patients reported quality of life
- A review on experience in transition in comparison with other disorders
- Analysis of patient appointment usage
- A scope of educational and employment status attainment, using data linkage
John James OBE, Chief Executive of the Sickle Cell Society, said:
“We are incredibly proud to be working with the Observatory on this pioneering work programme, presenting a huge opportunity to transform the experiences of young people with sickle cell disorder. The transition from paediatric to adult care can be an overwhelming process, and many patients face challenges that significantly impact their health and well-being. Through this initiative, we aim to provide comprehensive, patient-centred care that ensures every young person has the support they need as they move into adult services.”
The report recommendations and a detailed design of an improvement programme will be shared with health systems in order to draw on the latest evidenced insights for review in any future NHS guidelines.
Dr Carl Reynolds, Senior Clinical Advisor at the NHS Race and Health Observatory, said:
“We are thrilled to work with the Sickle Cell Society on this vital and much needed project. Ensuring that young people with sickle cell disease experience a smooth and supportive transition into adult care is a priority for us. We believe through this partnership we can improve health outcomes and give young patients the confidence and care they need at this critical stage of their lives.”