Health bosses are aiming to tackle “poor care” faced by many children and young people living with sickle cell disease when they move to adult healthcare providers. NHS Race and Health Observatory, an independent body which examines inequality in healthcare, will work with the Sickle Cell Society charity with the aim of improving the transition for patients into adult care. It is estimated around 300 babies are born with sickle cell disease each year in the UK and young people with the illness “often experience poor care in non-specialist settings” when moving to adult care, the body said.
Professor Habib Naqvi, chief executive of NHS Race and Health Observatory, said: “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-centred 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.
” Sickle cell disease is an inherited long-term and potentially life-threatening condition which is more common among Black people. It affects about 15,000 people in England. It causes debilitating pa.