Supporting those living with sickle cell
It’s debilitating, dangerous, and a disease that disproportionately affects people from Black and Caribbean backgrounds. Those living with sickle cell disease need more than the very best medical treatment to manage this life-long condition.
As one of the biggest specialist treatment centres in the country, we have long recognised that more needs to be done to meet the complex needs of patients.
One in seven of all those in the UK with sickle cell conditions live in north east London (NEL) and Essex, and our hospitals have about 900 patients on our books.
That’s why we set up a pioneering community support project to supplement the service patients receive from the inherited blood disorders (haemoglobinopathy) team at The Royal London Hospital.
They are being helped to manage their condition through access to psychologists, physiotherapists, pharmacists, community nurses, advocacy staff and others.
The NEL integrated care board invested £2m in this package in order to improve patient outcomes, reduce health inequalities, and prevent hospital admissions.
It has now confirmed another £1m for 2026-7 to extend these services across the boroughs around a network of consultant-led one-stop clinics.
In addition, we are expecting a similar sum to be allocated for a Barts Health focus on helping those with sickle cell manage emergencies caused by a painful crisis.
Part of the community support scheme was to explore alternative treatment pathways for sickle cell patients in crisis, without them risking long waits in A&E.
Over a trial period of 120 days, the team tested one particular acute ambulatory model offering same day emergency care outside of A&E. It is currently evaluating the benefits this brought to about 170 patients before deciding on next steps.
Meanwhile all sickle cell patients will continue to receive specialist-led care at the hospital, including elective transfusion therapies where appropriate. If they do attend A&E with a crisis we aim to start pain relief within 30 minutes.
Dr Raj Thuraisingham, the hospital’s divisional director for medicine, said: “Improving services for people living with this lifelong condition is one of our priorities and we worked hard to improve our community outreach provision.
“We also increased our capacity to undertake automated red cell exchange transfusion, a technique that reduces complications in those living with this condition and dramatically improves their quality of life.”
We are currently hosting an exhibition at The Royal London Hospital in conjunction with the Sickle Cell Society to raise awareness of sickle cell disease. Our Journey, Our Story brings the voices of people living with sickle cell into a hospital setting through testimonies, photographs, archives and art work. You can view the full programme here..