Rare Disease Day 2023 called for progress on care coordination

We have worked with our members to demonstrate the value of care coordination and the impact of its absence. The benefits of care coordination are clear for people living with rare conditions and their carers, parents or relatives, for healthcare professionals, but also much more broadly for healthcare budgets, and providers of services outside of the healthcare environment.

A lot of the time it is forgotten that you have so much more going on in your life than just your rare condition.

Katie Callaghan
Infographic showing value of care coordination can be seen across five themes. An infographic made by Genetic Alliance UK for Rare Disease Day 2023

Value showing through

The report shows the value of care coordination can be seen across five themes.

  • Coordinating complex medical care
  • Delivering well-organised logistical support
  • Assisting an effective transition from children’s services to adult services
  • Bridging the gap between healthcare and other services, such as education and benefits
  • Integrating support from rare condition charities and support groups

For me, care coordination means treating someone as a whole individual, communicating across different specialties and making shared decisions about a person’s care with the individual, not approaching it as a linear process in silos.

Ailsa Crowe

Time to make progress on priority 3 of the UK Rare Diseases Framework

On the same day that we launch this report, the Department of Health and Social Care launch the second Action Plan to implement the UK Rare Diseases Framework in England. Second iterations of the devolved administrations’ action plans are expected through the year.

We’re pleased to see actions on care coordination in the new England action plan and hope to see progress in all four nations on this crucial topic. Genetic Alliance UK will be disseminating the report through the All Party Parliamentary Group and Cross Party Groups in Scotland and Wales on Rare Genetic and Undiagnosed Conditions. We will also be seeking meetings with key implementation partners to ensure that new activities to deliver care coordination take account of the domains of value demonstrated by this report.