The Labour Party Annual Conference 2025

SME4Labour, Amplius and Harry’s Pals: EVERY PARENT’S WORST NIGHTMARE

A discussion about what can be done to help parents cope after they’ve received a serious life-limiting diagnosis for their child. It represents every parent’s worst nightmare but there’s very little counselling and respite available. This can lead to family breakdowns, suicide and poor mental health. Parents all over the country need more support. So, how can we “hold the parents’ hand” and help them when they’re caring for a critically ill child

Speakers:

• Stephen Kinnock MP, Minister of State for Care
• Julie Doyle, CEO of Amplius
• Hayley Charlesworth, Founder/ CEO of Harry’s Pals
• Rachel Wright, Founder/Director of Born at the Right Time
• Florence Eshalomi MP, MP for Vauxhall and Camberwell Green
• Ben Coleman MP, MP for Chelsea and Fulham

Chair: Matt Bishop MP

The event “Every Parent’s Worst Nightmare” delivered a deeply moving and powerful discussion on the realities faced by families whose children are diagnosed with life-limiting or life-threatening conditions, and the urgent need for better emotional and systemic support.

At the heart of the discussion was the lived experience of parents, most notably shared by Hayley Charlesworth, founder of Harry’s Pals. Through her personal story of her son Harry, she highlighted the profound trauma families face from the moment of diagnosis—often delivered abruptly and without adequate psychological support. The absence of structured emotional care following such life-altering news leaves many parents struggling with severe mental health challenges, isolation, and in some cases, suicidal thoughts. Her testimony underscored a critical gap in the current system: while medical care for children may be comprehensive, support for parents is often minimal or entirely absent.

This theme was reinforced by Rachel Wright, who spoke both as a healthcare professional and as a parent carer. She introduced the concept of “system-generated trauma,” describing how gaps, delays, and fragmentation across services can worsen the psychological burden on families. She argued that parent carers are an overlooked group within the healthcare system, despite being central to the care and wellbeing of their children. Without proper support, the strain on parents can have cascading effects on the entire family, including siblings.

From a policy perspective, Stephen Kinnock MP acknowledged the vital role of unpaid carers, noting their enormous contribution to the UK’s care system. He outlined current government efforts, including increases to carers’ allowance, a review of paid carers’ leave, and cross-departmental work aimed at improving coordination between health, education, and employment support systems. However, the discussion made clear that while these measures are welcome, significant gaps remain—particularly in early-stage emotional support for families.

Julie Doyle provided an important perspective from the housing sector, demonstrating how non-health organisations can play a role in supporting vulnerable families. Through initiatives such as Harry’s Pledge, housing associations are helping to signpost families to counselling services and recognise the importance of respite care. Her case study illustrated how relatively small, targeted interventions—such as access to therapy—can prevent family breakdown and reduce long-term pressures on public services.

Ben Coleman MP reflected on both historical progress and current challenges, highlighting how previous investments in children’s services have been eroded over time. He emphasised the need for better integration across services and suggested that upcoming reforms, including neighbourhood health models, could offer opportunities to improve coordination if properly implemented.

A consistent message throughout the event was that supporting parent carers is not only a moral imperative but also an economic one. Early intervention through counselling and emotional support can prevent more severe mental health crises, reduce reliance on NHS services, and help families remain stable. Speakers repeatedly stressed that relatively low-cost interventions—such as access to therapy sessions—can have life-changing impacts.

The discussion concluded with a clear call to action: to place psychological support for parent carers at the centre of paediatric care, improve cross-sector collaboration, and ensure that no family faces such devastating circumstances without the support they need. The event highlighted that while charities like Harry’s Pals are making a critical difference, sustainable, systemic change will require stronger government backing and a more coordinated national approach.