Patients with Sickle Cell Disease should benefit from having their universal care plan (UCP), which is part of the OneLondon shared care planning solution, being available on the NHS App and the NHS National Record Locator.
Five integrated care boards across London are part of OneLondon, a group of integrated care systems in the capital city. The integration is in response to the All-Party Parliamentary Group inquiry and report titled No One’s Listening Report of 2021.
The inquiry found there were avoidable deaths from sickle cell disease due to sub-standard care for sickle cell patients, low awareness about the disease among healthcare professionals, and negative attitudes towards sickle cell patients.
Yet the disease affects 15,000 people in the UK who suffer from anaemia and severe pain. Over half (60%) receive their treatment in London, so it was important that the Universal Care Plan was available on the platforms most commonly used by healthcare professionals in the capital. Following the integration, 5,000 people with the disease now have a Universal Care Plan on the integrated care platform.
The National Record Locator is an NHS service that provides access to patient information that other health and care organisations provide for sharing. The integration into the National Record Locator means care service providers can view the UCP and see the patient’s care plan and symptom management requirements.
Game changer
“I think this is a real game changer for people with sickle cell disease,” said Nick Tigere, head of the UCP programme. “They are now able to confidently seek the medical attention they need while in crisis, knowing fully that the services they attend, wherever they attend in London, will be aware of consolidated key information on diagnosis, symptom management, and treatment options.
"Supporting healthcare professionals with immediate access to this critical information is facilitating timely interventions and improved care. It really has been transformative for people’s care pathway.”
The UCP is available via the NHS App, meaning patients can show a healthcare professional this file, or in an emergency, if the patient is too unwell to communicate effectively, they can use the NHS App to reveal their care preferences.
“The UCP platform has become a well established tool for health and care professionals and is helping to ensure people have their care wishes and preferences respected. Our role is to enable all parts of the system to quickly access relevant patient information at the right place and right time,” Tigere said.
