Almost 80 per cent of people with sickle cell disease who receive care in London now have a Universal Care Plan (UCP), helping to ensure they get the right care wherever they are in the Capital (19 June 2025).

Today is World Sickle Cell Day and the theme is ‘Telling it Loud’ inviting everyone to speak up, be heard, raise awareness, educate and amplify what matters. The UCP does just that, helping to give a voice to sickle cell patients often when they need it most.

The UCP is an NHS service that digitally shares personalised care plans with health and care professionals across the Capital to help ensure more patients receive the care and outcomes they desire.

Last year the UCP was extended to support Londoners with sickle cell. Haematology centres agree care plans with patients which may include information about preventative day to day management, guidance for ward staff and guidance for ambulance and emergency care services during a crisis.

In total around 8,200 sickle cell care plans have been created and shared on the UCP system, representing almost 80 per cent of the estimated 10,500 people with sickle cell receiving care in London. Over 5,300 sickle cell care plans have been viewed by staff working in urgent care services, supporting prompt an responsive care.

Work continues to ensure that everyone with sickle cell who is receiving care in the Capital has a UCP so more people benefit from the joined up care it supports.

Nick Tigere, Head of the Universal Care Plan Programme, said:

“The Universal Care Plan Programme is proud to support World Sickle Cell Day and the Sickle Cell Society’s fantastic campaign. Speaking up, being heard, raising awareness, educating and amplifying what matters to a person is what the UCP is all about. It is fantastic to hear feedback from Londoners with sickle cell about how the UCP is helping ensure they receive more effective and more joined up care. That is why we continue to work hard to ensure even more people with the condition have a UCP.”

Dr Banu Kaya, Consultants in Paediatric Haematology & Co-chair of the UCP Sickle Cell Delivery Group, said:

“Sickle cell disease is a serious and lifelong health condition, although treatment can help manage many of the symptoms. This will be most effective when personal care plans are accessible to everyone involved in a person’s care. So it is great news that almost 80 per cent of people with the condition receiving care in London now have a Universal Care Plan.

“I have seen first hand the positive difference this is making in helping to ensure patients get the right care, wherever they are in the Capital. For example one of my patients receives care from two different hospitals and their UCP supports effective communications between staff involved in their care, ensuring the correct protocol for their care is followed at all times.”

Introduced in July 2022 to initially support End-of-Life and palliative care planning, the UCP was extended last year to also support Londoners with sickle cell. Earlier this year the UCP was further extended to support Londoner with other long term conditions including dementia and learning disability.

UCPs can be accessed by health and care professionals through the London Care Record, local electronic patient record systems, or via the UCP web portal. Importantly, professionals outside of London can also view these care plans using the National Record Locator Service, ensuring continuity of care across regions.

Patients can view their UCP via the NHS App or Login service. Work is also underway to enable Londoners to create or edit their care plans via the NHS App and login further empowering them to input into their health and care planning.

To learn more about the Universal Care Plan and how it supports people living with SCD, visit the UCP website. If you would like more information about getting a sickle cell care plan speak to you care provider.