What is the challenge your project is going to address and how does it connect to the theme of 'How can we improve across system boundaries?​

Our strategic objective is to identify the barriers in access to healthcare services experienced by adult congenital heart disease (CHD) patients. It is estimated that 42% of patients become lost to follow up during transition to adult services. We believe access to general practice compounds this problem and greater collaboration between primary and secondary care is integral to improving access.

Many adult patients had corrective surgery in childhood and are unaware of the long-term effects of CHD and how to live well with their condition. Increasing access to healthcare services will raise awareness, provide education and an opportunity to reach out for support.

Challenges include;

• identifying ways to reconnect with adult patients
• engaging with primary care providers

We will enlist the support of our patient participation group to ensure our approach is driven from the lived experience and utilise our primary care networks to collaborate with GP practices.

What does your project aim to achieve?

Our objectives are to identify;

• gaps in services
• barriers to accessing services
• the wider health needs of adult CHD patients

We will assess patients’ understanding of their condition, assess their healthcare needs and identify gaps in services. CHD services are primarily provided in Newcastle, access to which may be limiting to patients particularly those from more deprived areas of our region. During the transition from paediatric to adult services patients may lose contact with healthcare services. Whilst geography, deprivation and transition are major inequalities faced by adult patients, there may be others which we anticipate will emerge from this pilot.

Outcomes from this pilot will identify potential opportunities to co-design services with patients that will meet their needs and collaborate across healthcare sectors in our region to further integrate and improve access to services for our patients. This pilot will also inform our annual work programme and longer-term strategy.

How will the project be delivered?

Our congenital cardiologist will provide a clinical steer, our network lead nurse and nurse specialist will lead patient engagement and workshops, and our adult patient representative will ensure we deliver a true lived-experience approach. We will engage with a primary care provider to identify a cohort of patients and understand how they currently engage with healthcare.

The project will have a structured plan and timeline but will be sufficiently agile to adjust as the project develops, while keeping the objectives and outcome in focus. The project lead is a PRINCE2 practitioner with the relevant skills to oversee the project, put appropriate resources in place and ensure a successful delivery.

We will work with the relevant stakeholders through focus groups, mainly virtually to reduce travel and cost. The pilot will be delivered as part of our work programme and progress reported to our Network board and NHSE.

How is your project going to share learning?

The project progress and outcomes will be shared with the Network board throughout the lifespan of the project. Outcomes will be disseminated to the wider network, including clinical and non-clinical staff from, through our education and patient engagement events.

We are part of a regional Network of Networks group which meet regularly to share learning and experience. The outcome of this project will be shared in this forum and will have relevance to other patient groups.

The outcomes will inform our regional CHD strategy which will be presented to the Provider Collaborative and Integrated Care Board in the North East and North Cumbria.

Findings and lessons learned from this pilot will be shared with the national CHD networks across England to support similar initiatives across the country.

We will also present the project outcomes at national meetings including the BCCA meeting in November 2025.