Family Carers and Lived Experience: Turning Integrated Care Conversations into Action

The International Conference on Integrated Care (ICIC26) in Birmingham is one of those events that leaves you feeling both energised and reflective. Over a few days, people from across the world came together to share ideas, challenge thinking, and, just as importantly, connect with one another.

I can see a clear shift in the conversation from focusing on what must happen to achieve a fully integrated care system, to actively testing and implementing initiatives, particularly those involving family carers and people with lived experience.

What stood out straight away was the mix of voices at the conference. It wasn’t just professionals or system leaders; people with lived experience were part of the conversation, bringing important perspectives that grounded many of the discussions.

That matters because when insights are shaped by real experience, the conversation becomes more focused, more honest, and ultimately more effective.

I had the opportunity to contribute in several roles, including chairing sessions and presenting on Ireland’s integrated care journey. I chaired sessions focused on Supporting Self-Management and Recovery Across Care Transitions, as well as digitally facilitated Co-Design & Lived Experience Oral Poster Session and Community & Prevention Oral Poster Session. These discussions highlighted the importance of empowering individuals and communities and embedding lived experience into service design and delivery.

I also presented as part of the session “Ireland’s Integrated Care Journey: From Pilot to Practice”, where I spoke about the experiences of family carers and families, and what truly person-centred care needs to look like in practice. Together, Ireland is leading the way in integrated care in a lot of ways, but a key theme kept coming up again: family carers are essential partners in care. While this message was clearly recognised, it also highlighted an important gap where there is still more to do to ensure family carers’ voices are consistently included and heard. The collective contributions reflected Ireland’s ongoing transition from pilot initiatives to embedded, system-wide integrated care, with a strong emphasis on collaboration, evidence, and person-centred practice.

One session that really set the tone was “What Has England’s Journey Taught Us?”

It offered a realistic and honest reflection on:

• The gaps in recognising and supporting unpaid carers
• Challenges around trust and accountability
• Why progress can feel slower than expected

It was evident from the session that lived experience needs to be part of the process in

moving from insight to action. Better systems are built when people with direct experience help shape them. At the same time, it reinforced the need to ensure that all voices, including family carers, are consistently represented in these spaces.

Another session from Forward Carers that stood out to me brought a strong practical focus.

The discussion centred on workforce sustainability and recognising that many employees are also unpaid carers. Supporting family carers is supporting the workforce, so supporting them effectively is essential.

Some practical actions included:

• Reducing the working week to four days
• Making meetings more purposeful
• Using data to guide decisions
• Prioritising staff wellbeing

These are simple but meaningful changes that can improve working environments while also strengthening support for family carers.

The use of headsets and microphones for poster presentations was a particularly innovative feature, and a different way to engage with people.

It created a more interactive and engaging experience, making it easier to connect with the content and the presenters.

Some of the most valuable insights came from informal conversations I had throughout the event. These moments created space to share experiences, reflect on learning, and hear different perspectives on what is working and what still needs to change. There is a clear commitment to improving care systems, but also a growing recognition that inclusion must go further.

Progress is visible:

• Lived experience is shaping discussions
• The role of family carers is increasingly recognised
• There is more focus on practical action

Ensuring that family carers are not only acknowledged but fully included as partners in care remains essential. ICIC26 reinforced that meaningful change happens through listening, collaboration, and a willingness to turn conversations into action.