Your say / Social Care
‘Parent-carers are reaching breaking point – the new government must act’
Parent-carers across Bristol and the South West are carrying an extraordinary load – one that is largely invisible, frequently unsupported and increasingly unsustainable.
As a children’s hospice at home charity working with families every day, we see the reality behind the statistics. Local findings show that 91 per cent of parent-carers experience ongoing anxiety, a clear sign of just how close to breaking point many families have become.
Without earlier, joined-up support, these pressures can escalate into crisis situations that place even greater strain on families, the NHS and the social care system.
is needed now More than ever
Thousands of parent-carers support children with complex medical needs every single day. Many describe feeling exhausted, isolated and constantly battling for the basics.
Families face poorer health, wellbeing and financial pressures than the average household, and the emotional strain is immense. Too often, this deepens existing health inequalities, particularly for families already facing barriers to timely care, financial security or local support.
One parent told us: “I’m always fighting for something.” Sadly, that’s something we hear all too often.
Jessie May’s nurses help give parents a break from their caring duties
Caring for a child with life‑limiting or complex medical needs often means providing support around the clock. Parents speak of feeling overwhelmed by the sheer volume of appointments, decisions and advocacy required.
As one parent put it: “Physically I can cope; it’s the mental load that’s hardest.”
Another shared the impact on family life: “We don’t feel like parents. We just feel like carers.” These sentiments are repeated time and time again.
At Jessie May, our nurses see this pressure first-hand. We provide specialist care at home: clinical support, emotional reassurance and a safe space for families to be heard.
Even a few hours of help can give parents time to breathe, reconnect with their other children and feel less alone.
With the right support, families can rebuild resilience, protect their wellbeing and feel more able to face the pressures of daily life.
One parent recently told us: “It is so nice to finally be heard.”
That sense of being understood and supported is often the turning point for families who have spent months, sometimes years, fighting for help.
Parent-carers are not “just coping.” They are expert parent-carers: coordinating care, managing appointments, administering medication, navigating complex systems and providing continuous emotional and physical support – all while repeatedly fighting for the services their children need.
This is not what family life should look like.
Andrea Choules is urging the new government to improve support for parent-carers
With a new Prime Minister in post, this is a pivotal opportunity to recognise parent-carers as the backbone of children’s health and social care, and to act accordingly.
We call for action on:
- Better practical and emotional support for families, delivered consistently and early enough to prevent crisis situations.
- Accessible, joined‑up services that reduce the burden on families, rather than adding to it.
- A clear commitment to reducing health inequalities, so children with complex needs and their families can access timely, fair and appropriate support wherever they live.
- Recognition of expert parent-carers as a vital part of the care system, not an afterthought.
- Investment in specialist community nursing, which provides lifeline support, enables early intervention and helps prevent avoidable pressure on NHS and social care services.
Parent-carers are exhausted, isolated and stretched beyond what any family should endure. They are holding up a system that relies heavily on their unpaid labour, emotional resilience and relentless advocacy.
They deserve better.
As director of care at Jessie May, I am calling on the new government to put expert parent-carers at the heart of policy decisions – not as a footnote, but as a priority.
Their voices must shape the future of children’s health and social care. Their experiences must inform investment, reform and accountability. And their wellbeing must be recognised as essential to the wellbeing of the children they care for, leading to improved outcomes for children, families and the wider health and social care system.
Behind every child with complex needs is a family doing extraordinary work. It is time we saw it, valued it and supported it.
This is an opinion piece by Andrea Choules, director of care at children’s hospice Jessie May.
All photos: Jessie May
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