Listening to Families: Turning Lived Experience into Policy Influence

At the hybrid S.P.A.C.E. hustings held Thursday 26 March at Bangor University, North Wales, families raising disabled and seriously ill children spoke with clarity, courage and urgency about the realities of their lives and what needs to change.

The event brought together parents, carers, third sector partners and political candidates from Labour, Plaid Cymru, the Welsh Liberal Democrats, Reform and the Green Party (Welsh Conservatives were unable to attend as they were launching their manifesto). This created a rare and important space where lived experience was placed firmly at the centre of political discussion ahead of the upcoming Senedd elections in Wales.

Candidates from across all political parties were invited to listen and respond directly to families’ questions, covering devolved responsibilities such as health, social care, respite provision, employment and mental health support.

With representation from five parties, families were able to hear a broad range of political perspectives and question those seeking to represent them in the Senedd. Each party was given equal opportunity to respond, reinforcing the event’s commitment to fairness, balance and transparency.

What followed was not an abstract debate, but honest testimony about the daily challenges families face: long waits for housing adaptations, the cost of specialist equipment, barriers to respite and mental health support, exclusion from childcare and employment, and the cumulative toll of constantly having to “fight” systems that should be working for them.

Family voices at the heart

Throughout the session, parents and carers shared deeply personal experiences, speaking not only about their own families but also about others they support and represent. Their contributions highlighted how policy failures play out in real life: parents giving up work to care, families absorbing thousands of pounds in additional costs, siblings affected by lack of support, and carers pushed to exhaustion before help arrives.

Again and again, families stressed the same message:

Support needs to come earlier, be easier to access, and work around real lives, not only once families reach crisis point.

The strength of the event lay in this collective voice. Parents were not asking for sympathy, but for systems that recognise their expertise and respond with urgency, dignity and fairness. Families made clear that this was not a one-off conversation. Commitments made in the room will be tracked, reflected on, and followed up as manifestos are published and the election approaches.

What comes next

The learnings from this event will directly inform ongoing policy and public affairs work at Family Fund, particularly in relation to:

• Financial security and the extra costs of disability
• Access to respite, short breaks and wellbeing
• Barriers to employment and education for parents and disabled young people
• The need for clearer pathways, better information and earlier intervention

Feedback from the session will be shared with families, partners and decision-makers, and used to strengthen policy asks in Wales.

If you have been supported by Family Fund, and would like to hear about opportunities to get involved in our Policy and Public Affairs work, please let us know by emailing us at [email protected].