The report, which is entitled ‘Life to the Full’ and is supported by the True Colours Trust, examines the current situation for the estimated 800,000 disabled children in the UK and the 49,000 children with life-threatening and life-limiting conditions.
Although acknowledging that significant progress has been made in addressing the needs of both groups, the report argues that the complex needs of these children and their carers remains “invisible” to policy-makers.
Ally Paget, the author of the report, said: “Year on year, there are growing numbers of children with extremely complex needs for health and care – yet they remain a tiny minority. The message from families couldn’t be clearer: getting support, even for their most basic needs is a battle, and statutory budget pressures threaten to make this situation still worse.”
The report identifies improvements that have been made made to patients’ choice, the shift towards more personalised care, and the creation of stronger and more united representative bodies campaigning on behalf of seriously ill and disabled children and their families.
It reveals that many families face a constant struggle to have basic needs met and to understand what support is available to them. The report also warns that cuts to local budgets threaten to undermine some of the improvements that have been made.
The report recommends the creation of a children’s social care framework which would set the minimum standards for what local authorities have to provide. It also calls for targeted government support, including 24/7 end of life care, and for better collaborative working within the charity sector.
Paget added: “Government urgently needs to clarify the rights of these children – not only to education, health and care, but to every aspect of a full life. Charities already play a vital role in families’ lives, but there is more that they can do by working together – overcoming inequitable ‘postcode lotteries’, smoothing the disjoints between services, and making sure children are supported into adulthood.”
The True Colours Trust, The Council for Disabled Children and Together for Short Lives support the report’s findings and recommendations. In a joint statement they call on the government to consider carefully the report’s findings and use it to inform policy and implement change.
Dr Ros Taylor, MBE, national director for hospice care at Hospice UK, also welcomed the “valuable report”:
“It is terrible that so many children with life-limiting conditions and their families are still struggling to get the vital support they need to lead a full life, often because services are fragmented or simply unavailable locally,” she commented.
“However, this valuable report highlights encouraging examples of good practice where voluntary sector providers, including hospices, are working effectively with each other and statutory services to successfully tackle these gaps.
“We hope that government, policy-makers and charities will act on the report’s recommendations to create the best environment to enable more joint working to flourish. This could make such a practical difference, not just to the lives of children with life-limiting conditions, but also to their families.”