Launch of new services to support patients with sickle cell disease, thalassaemia, and other inherited red cell disorders

The North Central London Integrated Care System (NCL ICS) has new services and staff training to support patients with inherited red cell disorders, including Sickle Cell and Thalassaemia, living in Barnet, Camden, Enfield, Haringey and Islington.

The services include a new Community Red Cell Service which patients can access via phone or email which provides support, clinical care and advice for patients with red cell disorders. The service aims to address the physical, emotional, and social needs of patients and their families. Care and advice can be provided over the phone or in person at home, the George Marsh Centre or the Camden and Islington Sickle Cell and Thalassaemia Centre, with close links to primary, specialist, social and wider community care.

In addition to the Community Red Cell Service, a new ‘hyperacute’ unit will also be launched on World Sickle Cell Day (19 June) at North Middlesex University Hospital (NMUH) where patients with red cell disorders can bypass A&E and be provided with specialist treatment. This is particularly aimed at supporting patients experiencing a ‘crisis’, a common symptom of red cell disorders where a patient experiences a severe episode of pain which can last for several days or weeks. 

Stephanie George, sickle cell patient and co-chair of RED CELLS R US, said:

"It is fantastic to hear about the new services that are being launched in North Central London for sickle cell and other haematology patients.

Sickle cell is a very serious and unpredictable health condition that affects so many of us daily. All red cell patients deserve great care, and these new services are a step in the right direction. Hopefully they will be of great benefit to all of us who need it.”

Chris Caldwell, Chief Nursing Officer for the NCL ICB, said: 

“We are incredibly proud of these new services and we are committed to ensuring they will make a real difference by providing appropriate, tailored and holistic care to communities who have experienced challenges accessing the care they needed in the past. 

These services reflect a huge effort by patient groups, clinical specialists, service managers and commissioners. We are incredibly grateful to all those with lived experience who have given their time to improving care for all red cell patients in North Central London.”

Sickle cell disease, thalassaemia, and other red cell disorders are diseases which arise as a result of issues in the genes for haemoglobin, a part of a red blood cell which transports oxygen around the body. There are nearly 20,000 people in England who are affected by these disorders, predominantly from Black, Asian, Middle Eastern and Southern Mediterranean ethnicities. 

The new services are part of a wider London Sickle Cell Improvement Programme (LSCIP) established by the NHS and other partners, following recommendations made in the ‘No One's Listening' report in 2021. The report was commissioned following an inquiry into avoidable deaths and lack of adequate care for red cell patients.

In addition to the new services, the ICS has created the first training in sickle cell management accredited by the Royal College of Nursing. The free training information contains videos and quizzes which will tackle the lack of awareness of sickle cell disease in staff supporting patients in community and hospital settings.

Additionally, Universal Care Plans (UCPs) are being expanded to meet the needs of those with red cell disorders across all settings of care and provide patients with personalised care more quickly. 

The Sickle Cell Society has also launched a mentoring scheme for children and young people between the ages of 10 and 24. The mentoring scheme allows children and young people to meet with a ‘peer’ or other young person who also lives with sickle cell and who is trained in mentoring. 

To find out more about red cell disorders and the services available to patients and residents, please visit the Red Cell Network's Patient Hub.