Universal Care Plan: a crucial tool for patient-led care

SWL Digital Pioneer Fellows: Sara Fischer and Lucy Williams

Roles: Transformation Managers
Organisation: Universal Care Plan Programme, hosted by South West London Integrated Care Board (ICB)

Designing and implementing the Universal Care Plan for London

Summary: The first phase of the project involved co-designing the expansion of the Universal Care Plan to support new patient cohorts with different needs, earlier in the care pathways. The second phase focussed on driving awareness and adoption and supporting the operationalisation of the expanded UCP.

Story of the project

Launched in 2022, the Universal Care Plan (UCP) is a NHS-commissioned service in London that enables people to share “what matters to me” with their health and care professionals. Individual needs and differences, such as culture and communication preferences, are often overlooked when it comes to managing health conditions.

With the UCP, healthcare professionals can partner with patients, along with their family or unpaid carer, to ensure these preferences are recorded alongside key medical information, including CPR decisions, symptom management plans and advance decisions. Sharing this information helps drive more personalised care outcomes for patients, providing reassurance that their wishes are being considered.

In the design and implementation phase of the project, there have been two key aims:

1. Expand UCPs capabilities to support people with long-term conditions (LTCs) or complex conditions: co-design and expand the digital platform for continual support of a wider cohort of people with LTCs or complex conditions. Around 1% of the GP registered population in London have a UCP but there is the potential for this to be up to 20% of Londoners who live with LTCs.
   
2. Drive adoption of the UCP within new and existing clinical care pathways: the UCP is predominantly used in end of life and urgent care but has the potential to support people earlier in their illnesses, such as with dementia, frailty, learning disabilities.

During the Fellowship, we developed and launched an expanded version of the UCP and began engaging with new and existing users to raise awareness, encourage adoption and gather feedback. The UCP now supports two thirds of the national population who live with sickle cell disease, as well as tens of thousands of Londoners with dementia, frailty, learning disabilities and autism, as well as children with complex needs and carer contingency plans. The UCP is recognised at an international level for its unique and ‘blended’ design.

Key challenges coming into the Fellowship included:

• designing the UCP for diverse stakeholder needs;
  
• reaching tens of thousands of monthly users to help them manage the change of using the UCP;
  
• finding champions to help drive the implementation of the UCP; and
  
• encouraging uptake of the UCP amongst busy professionals.

Driving project development through the SWL Digital Pioneers Fellowship

We are both passionate about the UCP and know that when it is embedded in practice it is a critical tool. However, change management skills are crucial for bringing stakeholders on our journey and realising the potential of the UCP.

Through each of the learning days, the Fellowship has given us the tools and advice to put this into practice. The mentoring on offer has also given us a deeper understanding of how to manage change with a diverse group of stakeholders.

The Fellowship was more comprehensive than we expected. The learning days were varied in structure, including ‘hands on’ tasks, and having discussions with experts like Ian Pettigrew gave us an appreciation for the psychology behind successful teams and workplaces.

The UCP programme is hosted in SWL ICB but our exposure to other organisations is relatively shallow, due to the scale of our work and the breadth of organisations we interact with.

The Fellowship gave us an opportunity to hear from other SWL organisations and learn about their projects in more depth, including NHS and Voluntary, Community and Social Enterprise (VCSE).

‘Networking’ is a bit of a cliche, but this has truly been one of the highlights of the Fellowship for us both. We have been able to access senior leader forums within the South West London ICB and through the mentoring. Lucy’s mentor is a CCIO of a large Trust and has given her crucial insight into how Trusts operate, as well as career advice and recommendations for further training. They have also given us the opportunity to present our programme to senior digital leaders within London ICBs. Sarah’s mentor has given her tools to help impact change across different stakeholder groups, using different communication and change management strategies.

Outcomes

Approximately 70% of people with recorded end-of-life preferences in the UCP have died in their preferred place, compared to the national average which is around 50%. We have also seen a 20% lower rate of hospital deaths amongst people using the UCP, compared to the London average. Urgent Care teams consistently view UCPs over 15,000 times a month, enabling personalised crisis care.

Pilots in new clinical care pathways

The expanded UCP launched in January 2025 alongside two promising pilots, which were organised by the London Clinical Networks, who are also involved in the UCP Design Oversight Group.

Memory Service Clinics are now creating UCPs for people with dementia earlier in their pathway, documenting their preferences and choices before they are no longer able to communicate their wishes.

Another pilot is taking place in Camden and Islington for people with learning disabilities. Learning disability nursing colleagues in local authorities are involved in identifying and creating UCPs for patients with the more complex needs who frequently attend hospital. Professionals working in emergency departments are involved in the pilot and can see reasonable adjustments and communication preferences, enabling patients to have better experiences of care.

Integrated Neighbourhood Teams

Integrated Neighbourhood Teams are also embedding UCPs in their models of care to support cross-sector care planning collaboration. UCP is accessible to every professional who needs to be involved in care, which directly supports multi-disciplinary working.

Social Care

The UCP is now used in over 200 care homes, compared to around 20 care homes in 2022. Feedback has been positive, with one SWL-based Care Home Manager noting that:

Because UCPs are in place for our residents, other healthcare professionals, including ambulance services, now have access to essential information. This has reduced unnecessary hospital admissions and avoided distressing situations for residents and their families.

– SWL-based Care Home Manager

You can learn more about the impact of the UCP by watching this video:

Next steps

We have had several expressions of interest from clinical networks to use the UCP for new purposes, including mental health crisis planning; seizure management for patients with epilepsy; and catheter management.

We are prototyping a new module to the digital system for assessments, the first of which is likely to be a Comprehensive Geriatric Assessment. These assessments are usually carried out on paper or on Trust EPR systems, which are siloed and cannot be viewed by professionals outside the organisation. By completing this assessment through the digital UCP, information will automatically populate parts of the care plan, supporting an end-to-end workflow and reducing duplicate data entry.

To learn more about the UCP and access resources, please visit the website.

For more information on the SWL Digital Pioneers Fellowship and check out our Innovation Directory to browse through the full list of Fellows.