New enhanced sickle cell community service launches across south east London

16 Dec 2024
Sickle Cell

NHS South East London has launched a new enhanced sickle cell community service to address health inequalities and provide better support for people living with sickle cell disorder across south east London.

The new community service offers patients access to community-based specialists, including dietitians, physiotherapists, and pharmacists, working alongside psychologists, nurses, and haematology teams to deliver a holistic approach to care.

This initiative builds on recommendations from the Sickle Cell Society’s No One’s Listening report*, which highlighted the challenges and inequalities faced by sickle cell patients as they navigate the healthcare system.

Andrew Bland, Chief Executive Officer for the South East London Integrated Care Board, said:

“The No One’s Listening Report demonstrated the lack of prioritisation given to sickle cell care with the NHS. Given south east London has the highest numbers of people living with sickle cell in the country, I am delighted we are taking bold action to improve care for our population. I am thankful to our partners across the system who are collaborating to develop and deliver this new service that will provide more holistic and personalised care, improving the lives of our patients living with sickle cell in south east London.

Dr Sara Stuart Smith, Consultant Haematologist at King’s College Hospital and Chair of the South East London and South East Haemoglobinopathy Coordinating Centre (SELSE HCC), said:

“Our south east London enhanced community multidisciplinary team is in place to provide holistic support for adults, young people and children living with sickle cell disorders, including with dietary, benefits and pharmacy advice, physiotherapy, group psychological support and community nursing. As SELSE HCC chair, it is a pleasure to thank our ICB colleagues for their fantastic cooperation, support and expert project management.”

Recognising the socioeconomic barriers that many people living with sickle cell face, the service also provides expert welfare and benefits advice through the community providers and Southwark Law Centre.

Young people aged 10–24 can also benefit from a peer mentoring programme led by the Sickle Cell Society. This pairs them with mentors who have lived experience of managing the condition, offering guidance and support.

People living with sickle cell disorder will be able to access this service at three different locations across south east London, with remote, telephone and home visits available depending on individual circumstances.

Debbie Bodi, Clinical Nurse Specialist in Haemoglobinopathy and part of Bromley Healthcare’s Specialist Children’s Community Nursing Team, said:

“My goal in caring for children with sickle cell and their families has always been to equip parents with the knowledge and confidence they need to manage the condition effectively.

“Having worked with people living with sickle cell for many years, it is refreshing to be able to offer more and to see how this project really can make a tangible difference to those living with sickle cell disease.”

Nkechi Anyanwu, Community Matron, from Evelina London Children’s Hospital and Guy’s and St Thomas’ NHS Foundation Trust, also shared:

“I am happy be part of the south east London enhanced sickle cell community pilot. I believe that the additional multi-disciplinary team will play a crucial role in promoting the health and wellbeing of our sickle cell patients and their families to live well with their condition, extending to the wider south east London community”.

People across south east London are already benefiting from the new community service.

A Bromley parent, whose daughter recently attended an appointment as part of the service, shared:

“My recent appointment with the new multidisciplinary team for my daughter was an incredibly positive experience.

“The dietitian provided valuable advice on incorporating foods into my daughter’s diet, and this guidance felt personalised and practical. The pharmacist’s input was equally impactful. She took the time to explain my daughter’s medication in detail.

“This new way of working is a huge step forward for families like ours. We’re grateful for this new approach and hopeful for its continued success.”

Developed in collaboration with Guy’s and St Thomas’ NHS Foundation Trust, Bromley Healthcare, Oxleas NHS Foundation Trust, Evelina London Children’s Hospital, SELSE HCC and the South London Office of Specialised Services, this new service is already improving lives across south east London.

Ishbel Collison, the Long-term Conditions Service Manger from Oxleas NHS Foundation Trust said:

“We are delighted to be part of the new enhanced south east London sickle cell community service. We recognise that there is more that could be offered to support our local Bexley and Greenwich residents with sickle cell and we are committed to ensuring this team will make a real difference by providing appropriate, tailored and holistic care closer to home.”

Find out more about the changes happening to sickle cell services in south east London on the South East London ICB sickle cell webpage.