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Improving joined-up care for Londoners with sickle cell disease

From this March the Universal Care Plan (UCP) for London will be extended to support people with sickle cell disease, helping to ensure they get the right care wherever they are in the Capital (14 February 2024).

Last year NHS England announced a range of measures aimed at better meeting the needs of patients with sickle cell disease in response to the No One’s Listening Report, including the introduction of digitised personal care plans that are accessible to staff involved in their care and treatment.

There are around 15,000 people in England with sickle cell disease, with around 52% of them living in London and 65% accessing care from a London provider.

NHS Leaders and clinicians identified the UCP platform as the preferred way of delivering this joined up care in the Capital. It is an NHS service that enables every Londoner who needs one, to have a personalised care plan digitally shared with health and care professionals across the Capital, helping to ensure more patients receive the care and outcomes they desire.

Introduced in July 2022 to initially support End-of-Life and palliative care planning, the UCP is becoming a well-established tool with over 290,000 views of care plans by health and care professionals, including 83,000 views by Urgent Care Services. 

Expanding its use to people with sickle cell disease offers significant scope to better meet their needs by joining up information between primary, community, urgent and emergency care services across London and beyond.

Following detailed development work with clinical experts and patients the sickle cell care plan will be available in the UCP platform from next month. Haematology centres will agree a care plan with their patients. This may include preventative day to day management, guidance for ward staff and most importantly guidance for ambulance and emergency care services during a crisis. 

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

“Sickle cell can be deeply debilitating disease with patients often experiencing periods of intense pain. It is really important that everyone involved in their care and treatment can access their care plan so they can best meet the patient’s needs. This is particularly vital when patients are receiving emergency care. Including sickle cell care plans in the UCP is a really exciting development that has the potential to significantly improve the health outcomes and quality of life of so many people.“

Tomas Ince, UCP Senior Clinical Transformation Manager, said:

“The UCP Platform has become a well-established tool for health and care professionals and is helping to ensure people at the end of their lives have their care wishes and preferences respected. I am proud that we are building on this success by expanding its use to support Londoners with sickle cell disease. Patients and clinical experts have been centre-stage of this development to ensure it best meets the needs of people with sickle cell disease and helps them get the right care wherever they are in London.”

The UCP can be accessed through the London Care Record, some local Electronic Patient Record systems and via a web portal. It can also be viewed by health and care professionals outside of London using the National Record Locator Service, meaning essential information about a person’s urgent care needs can be accessed anywhere in England.

Additional training materials for health and care professionals will be available shortly and will explain how to access and make best use of the UCP for the benefit of their patients with sickle cell disease.

In addition to End-of-Life, palliative care and sickle cell disease, the UCP Team is working with a range of clinical networks to consider how the UCP platform could also support other pathways such as frailty and dementia.

You can find out more about the UCP here.

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