Two thirds of Londoners with sickle cell disease have a Universal Care Plan
Over 5,000 sickle cell patients in London now have a Universal Care Plan (UCP), helping to ensure they get the right care wherever they are in the Capital (16 September 2024).
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.
Introduced in July 2022 to initially support End-of-Life and palliative care planning, the UCP was extended in March this year to also support Londoners with sickle cell disease.
There are around 15,000 people in England with sickle cell disease, with just over half of them estimated to live in London. It can be a 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.
Haematology centres agree a care plan with their patients which may include preventative day to day management, guidance for ward staff and guidance for ambulance and emergency care services during a crisis. These plans are then saved on the UCP platform and can be viewed by staff across London involved in the patient’s care. In total 5,662 sickle cell plans have now been created and saved on the UCP since March.
Digitally sharing care plans is particularly vital when sickle cell patients are receiving emergency care as prompt treatment can be lifesaving and getting the right care can mean periods of crisis might be shorter, reducing suffering. Between March and August this year 361 patients with sickle cell had their care plans viewed by staff from London Ambulance or 111 services.
Patients can also view their UCP on the NHS app or web browser helping to reassure them that their care plans are communicated correctly to those professionals looking after them.
Dr Banu Kaya, Consultants in Paediatric Haematology & Co-chair of the UCP Sickle Cell Delivery Group, said:
“It is great news that less than six months on from expanding the UCP to support Londoners with sickle cell disease around two thirds of them now have a care plan on the platform. 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. Work continues across the Capital to ensure every sickle cell patient has a UCP so more people benefit from this joined-up care.”
UCPs can be viewed by staff involved in the patient’s care 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.
Later this year the UCP will evolve into a broader personalised care and support plan. In addition to urgent and end-of-life care and supporting people with sickle cell disease, it will also support patients with other multiple long-term conditions including dementia, frailty and learning disabilities.
Work is also underway to support Londoners to create or edit their care plans via the NHS App and login.
You can stay up to date with these developments by visiting the UCP website.
