Call for people with sickle cell disease to sign up to the NHS App

South west Londoners living with sickle cell disease are being urged to personalise their future care by registering preferences about their treatment through the NHS App.

The Universal Care Plan (UCP), which is now available on the NHS App, enables south west Londoners to have their care and support wishes shared with healthcare professionals across the capital. Since March, this has included urgent sickle cell care directives to ensure that 111 and 999 colleagues are better informed about how to manage a sickle cell crisis in a personalised way. 

We are asking people with sickle cell disease and their families to click on the NHS App to get a personalised digitised care plan.”

Tomas Ince, NHS South West London’s UCP senior clinical transformation manager said: “South London has the highest concentration of people with sickle cell in the UK, with over 3,800 people living or receiving hospital treatment. We are asking people with sickle cell disease and their families to click on the NHS App to get a personalised digitised care plan. This ensures medical teams can access vital health information immediately.”

Claudette Allerdyce (pictured above) is NHS South West London’s head of medicines optimisation and a member of the Sickle Cell Society’s board. She is working to raise awareness of this disease and improve care.

“The Universal Care Plan on the NHS App is an important step in improving the support people with sickle cell will receive in London.”

“As the parent of an adult son with sickle cell disease, I am thankful that as he has got older, he has generally been able to manage his sickle cell crises at home,” she said.

“However, while caring for him, as a young child, I met other parents during hospital admissions, who shared stories of poor care and support, particularly during a severe crisis.

“As a health care professional, it was hard to hear these stories. And, while improvements have been made, there are still gaps in sickle cell disease care which we are working hard to address in south west London.

“The Universal Care Plan on the NHS App is an important step in improving the support people with sickle cell will receive in London – ensuring appropriate clinicians across the capital are able to see the right information about the person they are treating.”

Sickle cell is an inherited blood disorder and a serious and lifelong health condition. It is particularly common in people with an African or Caribbean family background. People with sickle cell disease produce unusually crescent-shaped red blood cells that can cause blood clotting in their arteries.

It can cause painful episodes called sickle cell crises which can be very severe and last for days or weeks. It can lead to an increased risk of serious infections, and anaemia where red blood cells cannot carry enough oxygen around the body which can cause tiredness and shortness of breath. Some people also experience other problems affecting their growth and lungs as well as strokes.