There are an estimated 49,000 children and teenagers in the UK with a life-limiting or life-threatening condition. In addition, a small proportion of Britain's 800,000 disabled children have needs that are similarly complex - for things like specialist equipment, therapies, and round-the-clock nursing care. Though small, their numbers are growing year on year. Due in large part to medical advances, they are living longer, with increasing numbers making the transition to adult services.
As a small, ill-defined and vulnerable group, these children and their families have historically struggled to have their voices heard. In the last few years, tangible advances have been made; the children's palliative care and disabled children's sectors have active, authoritative representation, and in England a network of nearly 150 parent-carer forums provide an opportunity not only for mutual support but for influence on local and national decisions. The next step, surely, is to ensure that children's voices are heard, too - not as a matter of token, but as a matter of routine.
Today sees the launch of new Demos research, produced with the support of the True Colours Trust, which looks at the support that exists across the UK for children and young people with the most complex conditions and the most intensive needs for care and medical treatment. Our findings are based on extensive consultation with those providing and those using services: family carers, and children and young people themselves.
Despite welcome progress on voice, the Life to the Full report makes clear that the message is still not getting through. Family carers report, time and again, that getting even the most basic support is a battle (a battle, moreover, in which the whole family's emotional and financial wellbeing is all too often collateral).
Outstanding support exists, much of it provided and spearheaded by the charitable sector. The report contains several examples - a national charity championing and addressing the needs of siblings of disabled children and adults, a residential care home helping 16-24 year olds navigate the transition to further education, employment and life in the community. More widely, of the 430-odd families who responded to our call for evidence, those who used short breaks, practical support and financial grants told us these were a lifeline. Children's hospices stood out as providing continuity of care, and opportunities for participation and friendship that the young people we spoke to valued highly.
However, the huge role played by the charitable sector is a double-edged sword. Beyond all doubt, families would be at a loss without the support charities provide. But as cuts to local authority budgets begin to affect children's services (hitherto protected), some charities face tough decisions: How far should they continue to (as they might see it) 'plug gaps' in statutory support? At what point do they instead devote their resources to campaigning against further cuts? Furthermore, the dominance of charitable support has arguably contributed to geographic inequalities - particularly in children's palliative care, where children's hospices have of necessity been established ad hoc, with no strategic oversight of the distribution of these valuable resources. Resources (whether children's hospices or children's hospitals) beget expertise, which beget best practice - so best practice, too, is unequally distributed between and within the four nations.
Both government and charities have a role to play in removing the uphill struggle for families, and levelling out access to high quality support. Government urgently needs to reach a settlement with families - to set out clear, minimum standards for what local authorities should provide, right into adulthood, to children and young people with the most complex needs. Likewise, local authorities must be supported to deliver to these specifications; government must ensure that adequate infrastructure, and adequate funding, exists at a local level.
Our message to the charitable sector - grant-makers and providers who serve disabled children and those with palliative care needs - is that it should spend its resources strategically. Alongside investment in 'lifeline' services like short breaks, practical, social and emotional support, and specialist palliative care charities have it in their power to bring about a more equal distribution of resource, knowledge, expertise and best practice. We recommend the use of 'challenge funds' for innovative partnerships within children's palliative care, and the promotion of 'twinning' and secondments to share expertise.
This research comes at a watershed moment for the relationship between charities and government. Life to the Full represents our plea for both to be ambitious - ambitious for what they can achieve when they work together, and ambitious for this too-long-overlooked group of children.