Universal Care Plan for London expands to include people with sickle cell disease

A new development for the Universal Care Plan (UCP) for London – an NHS service designed to support residents across the capital in having their care and support wishes digitally shared with health professionals across the city – means that it can now be used to co-create and share pain management plans for people with sickle cell disease.

It is hoped that utilising the UCP for people with sickle cell disease “offers significant scope to better meet their needs” through joining up information across care services in London and wider.

The move follows development work in collaboration with with clinical experts and patients, with senior clinical transformation manager Tomas Ince stating that they 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.”

Dr Banu Kaya, consultant in paediatric haematology and co-chair of the UCP Sickle Cell Delivery Group, states that for sickle cell patients “prompt treatment can be life-saving” due to increased risk. “By being accessible to more health and care staff the UCP will help ensure patients are taken to the best place to be treated by teams familiar with their care. For example the treatment might need to start in the ambulance and continue in the emergency department or a specialist unit.”

She adds: “The UCP will also provide health professionals with better awareness of serious complications, allowing prompt recognition so the correct treatment can be started and specialist teams involved without delay.”

Other recent updates highlighted by the UCP team include a new integration with the National Record Locator service intended to allow London ambulance crews to access UCP care plans when they are included in the service; an “improved patient search” for portal users; optimisation of UCP screens and navigation; and “a more resilient integration” with the NHS Personal Demographics Service, said to include “more helpful messaging to end users”.

Regarding next steps, the UCP team shares that work is ongoing with a range of clinical networks to consider how the platform could support additional pathways including dementia and frailty.

Last month, we shared that £1.5 million in funding for devices designed to automate red blood cell exchanges has been made available for 22 NHS trusts across South East London ICS, as part of efforts to support patients with sickle cell disease.

Last summer, we reported that NHS England, the NHS Race and Health Observatory and the NHS Innovation Accelerator announced a targeted call for innovations addressing Core20PLUS5 health inequalities including sickle cell.