As West Sussex stands on the brink of significant change—through local government reorganisation and NHS transformation—we must ask ourselves a vital question: will the voices of unpaid carers be listened to?
At Carers Support West Sussex (CSWS), we have over 30,000 carers registered with us and directly work with over 8,000 carers each year— each of whom give their time, energy, and love to support family members and friends who could not manage without them. They are vital to our communities, yet it is easy to leave them out of the conversations that shape the services they rely on.
The proposed shift to one or more unitary authority in West Sussex, alongside NHS structural change, presents both a challenge and an opportunity. Decisions made in the coming months will shape the future of social care delivery for years to come. If carers are not at the table, we risk designing systems that fail to meet their needs.
The NHS Long Term Plan outlines three major shifts: moving more care from hospitals to communities, making better use of technology in health and care, focusing on preventing sickness not just treating it. These shifts are welcome—but they must be shaped by those who live the reality of caring every day. Carers must be recognised as expert partners in care, not passive recipients of services, and they must be valued for the huge contribution they make to health and social care.
We’ve heard from carers across the county who are anxious about what these changes might mean. One carer told us, “I already struggle to navigate the system. If things change again, I’m worried I’ll fall through the cracks.” Another shared, “I don’t want to have to fight for support all over again just because of where I live.”
These are not isolated concerns. They reflect a broader fear that reform could lead to a postcode lottery in services, where access and quality vary depending on geography. That’s why we’re calling for equity to be at the heart of reform—fair, consistent, and responsive services for all carers, regardless of where they live.
The findings from our 2023 Carer Engagement Consultation reinforce these concerns. Over 840 carers participated, sharing that their top challenges include stress, managing their own physical and mental health, and social isolation.
Carers told us what would help: affordable local services, financial assistance, emotional support, and more choice and control. When asked to prioritise future support, the top two demands were increased funding for carers’ breaks and reducing financial hardship caused by unpaid care. Carers need investment in equitable, high quality and consistent support and services.
When talking about the carer services they had received from Carers Support West Sussex, one carer told us, “I felt heard for the first time in years. The support worker didn’t just listen—she understood. That made all the difference.” Another said, “The advice I received helped me navigate a very difficult time with my mum’s dementia. I don’t know how I would have coped without it.”
These voices matter. They are the lived experience that must inform policy. That’s why we are growing our Carer Voice Network, supporting carers to speak at local and national events, and embedding their feedback into every level of our organisation.
But we can’t do this alone. We need local leaders, commissioners, and policymakers to commit to meaningful engagement with carers and to understand the huge contribution that carers make to health and care. That means listening to them, involving them in planning, assessing the impact of decisions on their lives, and protecting the funding that supports them.
We also need to recognise the voluntary sector’s role in advocating for the communities they support whilst delivering high-quality, community-based support. Organisations like Carers Support West Sussex are trusted, embedded in local communities and have a staff team who have lived experience of caring. As such we are uniquely positioned to bring the voices of carers into the room.
In West Sussex, we’ve already seen the power of partnership. Our work with NHS Sussex has led to improved carer identification in hospitals and primary care, our work together with West Sussex County Council has adapted services to meet changing demand and our coaching programme is helping carers build resilience and confidence.
But there is more to do.
As CEO of CSWS, I am proud of the work we do. But I am also clear about the road ahead. Change is coming. Our job is to ensure that it leads to better outcomes for carers—not more barriers.
So, to our partners in health and local government: listen to carers, involve them, value them—they are vital to ensuring we have thriving communities in West Sussex.
By Caroline Pope, CEO, Carers Support West Sussex
