London’s Universal Care Plan recognised for support to care for sickle cell disease

The introduction of the Universal Care Plan, OneLondon’s shared care planning solution powered by Better, has been hailed as a key improvement in the care of sickle cell patients, a group historically disadvantaged by misconceptions and poor-quality care.

The personalised care plan is designed to address individual patient needs, ensuring that preferences are documented in advance, which is particularly crucial for those who may experience severe pain and struggle to advocate for themselves.

Dr Subarna Chakravorty, Consultant Haematologist at King’s College Hospital NHS Foundation Trust made the comments during a recent event in London for Better’s user community. Dr Subarna, added: “What matters to the patient should be just as important as the medical diagnosis itself.”

The Universal Care Plan facilitates seamless access to essential patient information for healthcare providers, ensuring that critical details, such as oxygen saturation levels, are readily available during treatment. Developed with input from patients, the plan employs the ACT acronym—Analgesia, Compassion, and Trigger Testing—to guide providers in delivering appropriate care.

While currently available only within London, there is a drive to extend digitalised care plans for people with Sickle Cell Disease nationally, supported by training programmes for healthcare professionals to ensure effective use of the system. The project represents a collaborative effort to enhance the quality of care for sickle cell patients and sets a precedent for similar improvements in other areas of healthcare.

During the event, Solome Mealin, a PhD student and patient advocate, shared a deeply personal account of her battle with sickle cell disease, emphasising the vital role technology can play in improving care. “All I’ve known is pain, every day,” she said, recalling her experiences where, in the midst of a sickle cell crisis, her only lifeline was an off-duty nurse who understood her condition. Desperate and in agony, Solome had to rely on this nurse to call her colleagues at the hospital to ensure she received the correct care.

“One of the hardest things is not always being listened to by healthcare professionals. They say things like, ‘it can’t be that painful,’ leaving you feeling alone and helpless,” Solome explained, highlighting the emotional and physical toll of constantly having to advocate for herself.
Solome stressed the importance of personalised digital care plans, which give doctors immediate access to critical patient information, even in unfamiliar settings. “Every time I move or even go on holiday, I have to think about whether there will be a hospital nearby that understands my condition,” she explained.

With accessible digital care plans, healthcare providers can offer more consistent, compassionate care by understanding her unique medical history and preferences. “I believe that with better care plans and universal support for conditions like sickle cell, we can truly transform patients’ lives,” Solome said, her message clear: better systems mean better futures for countless people like her.

Dr Subarna and Solome were joined by the Head of the Universal Care Plan programme, Nick Tigere, during a panel discussion on the plan which highlighted the importance of collaboration between clinicians and digital systems, particularly in prioritising care needs for conditions like sickle cell disease. The panel stressed the necessity of incorporating clinician and patient feedback into the Universal Care Plan pathways to enhance usability and effectiveness and the plan’s utility, particularly during urgent care scenarios.

Looking forward, Nick Tigere confirmed plans to measure the UCP’s impact on patient outcomes, aiming to continue learning and sharing insights with integrated care systems (ICSs) throughout the UK.