Health leaders launch a review to transform the quality of care for children and young adults with sickle cell disease as they transition into adult healthcare services. As part of the initiative, the NHS Race and Health Observatory will work with the Sickle Cell Society to improve this transition process for patients affected by sickle cell.
According to case estimation, there are approximately 300 babies diagnosed with sickle cell disease every year in the UK. The Observatory reports that many young people have to suffer suboptimal care in non-specialist settings during their transition to adult services.
Prof Habib Naqvi, NHS Race and Health Observatory CEO, said trust was important in the health care system filling the gaps in care. He said that by learning from successful transition outcomes of other disorders, it is ensured that the patient-centered care is followed up during this vulnerable stage of life. He underlined on optimal pediatric and adult services transitions whereby young patients receive full support and effective pain management to avoid lasting health complications.
Sickle cell disease is a genetic disorder that mainly affects individuals of Black origin, and it has been estimated that this condition affects around 15,000 people in England. Its effects involve devastating pain; recurrent infections; strokes; chronic fatigue; failure to achieve appropriate growth; and tissue and organ damage.
Patients and activists have aired their grievances for decades regarding the UK’s lack of awareness and poor care for this condition. A new report now shows that there is an alarming shortage of specialist sickle cell nurses, adding danger to patient life.
The future research will solicit information from young patients regarding their experiences with treatments and respond to all the needs in the last 12 years of age to 18 years of age. The literature review will consider both existing as well as newly developed resources, such policy initiates and suggestions which have been derived based on direct engagements with healthcare providers.
The decision comes after a number of recent tragic incidents, including the death of 22-year-old Darnell Smith, who was said to be attributed to hospital failings. The campaigner argues that change has been overdue and necessary for long-term improvement. “This brings about tremendous scope for transforming young people’s experience of sickle cell disease,” said John James, Chief Executive of the Sickle Cell Society. The NHS Race and Health Observatory was launched in 2020 with funding from NHS England.
It works towards evidence-based recommendations for the resolution of healthcare disparities in ethnic minorities. NHS director for healthcare inequalities, Professor Bola Owolabi, repeated that there is a determination to help sickle cell patients receive better quality care through innovative treatments and patient support schemes.
