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Budget cuts, poor coordination and access to services threatening to undermine progress for those with most complex needs.

A new report from cross-party think tank Demos highlights an emerging crisis facing ill and disabled children and their families, as fiscal constraints and poor coordination amongst service providers threaten access to quality care.

While underlining the significant progress that has been made over recent years, the report argues that the complex needs of these children and their carers can remain ‘invisible’ to policy-makers.

Life to the Full, supported by the True Colours Trust, focuses on two groups of children and teenagers with the most complex health and care needs. There are an estimated total of 800,000 disabled children across the UK, and 49,000 children with life-threatening and life-limiting conditions across the UK.

These children and their families have a right to lead an ordinary life supported by the system as needed and as a part of their wider community, but the structure, design and capacity of services to support them is shaky and often non-existent.

As the prevalence of such conditions has risen, so too have medical advances seen more of these children living longer – with the structure, design and capacity of services to support their needs struggling to keep pace.

While some important improvements have been made to choice and ‘voice’ – through a shift towards more personalised care, and the creation of stronger, more united representative bodies and local and national forums for parent carers to have their say, Life to the Full draws attention to where the system continues to fail children and their families.

Specifically, many families describe being locked in a wearying battle to have even their most basic needs met on a consistent basis, and to understand what support is available to them. Shrinking local budgets are also threatening to set back some of the progress that has been achieved over the past decade.

The report sets out the key challenges as:

• Difficulties in accessing care support, which is often hard-won, and prone to significant geographical imbalances in availability and quality;
• Poor communication and coordination between agencies;
• Cuts to local authority budgets mean services that focus specifically on these families are being reduced, impacting quality of life for both children and their families; and
• Financial challenges in health services are also impacting on children and families, leaving them isolated in a system that is breaking down.

In the face of statutory budget pressures, the report aims to focus on identifying opportunities for the voluntary sector to add greater value for these children and families – but it also calls on the Government to set out a policy environment that will support this through encouraging stability, structure, fair resourcing and collaboration.

Specifically, the report urges the Government to:

• Commit to a children’s social care framework (similar to the Care Act), setting minimum standards for what should be provided by local authorities, to help the charitable sector to better identify gaps to target through provision;
• Ensure that the infrastructure exists for the needs of disabled children with complex needs, and those with life-threatening and life-limiting conditions, to be met locally;
• Encourage collaboration between health practitioners’ training bodies and the children’s palliative care and disability sectors to develop a formal model for cascading knowledge and expertise from specialist to generalist practitioners; and
• Work with the new models of care approach, reflected in the NHS Five Year Forward View, to explore innovative approaches to commissioning, including regional models and social impact bonds.

In turn, charities and charitable funders should encourage greater sharing and collaboration within the sector between often disconnected care networks, and establish a programme of work that provides a voice for the needs of children with particularly complex needs and helps to communicate this to decision-makers.

They should also focus on more targeted support such as 24/7 end-of-life care; transitions from neonatal services and from child to adult services; community nursing; practical, social and emotional support for the wider family; bereavement support; sibling support and short breaks for families.

Commenting on the report, its author, Ally Paget, 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. 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.”

True Colours Trust, said:

“Life to the Full’ is a vital piece of research which confirms that disabled children and children with life-limiting and life-threatening conditions and their families continue to face significant challenges on a daily basis. We ask the government to consider carefully the report’s findings and use it to inform policy and implement future change. The True Colours Trust continues in its commitment to improving the lives of these children and their families and looks forward to working with others in the sector to bring about effective change.”

View report: http://www.demos.co.uk/project/life-to-the-full-report/

Notes to Editors

Demos is Britain’s leading cross-party think tank. We are an independent, educational charity, which produces original and innovative research. Visit:www.demos.co.uk.

This report was supported by the True Colours Trust, a grant-making trust that seeks to make a positive difference to the lives of disabled children with complex needs and their families, and to support children and young people with life-limiting and/or life-threatening illnesses. Visit: www.truecolourstrust.org.uk.

Report Methodology

Research took place between October 2014 and April 2015. It comprised:

• An online call for evidence consisting of three surveys – responses were received from 434 family carers, 189 practitioners and service providers and 17 children
• An evidence review
• 16 semi-structured interviews with professional experts
• Two expert workshops of 12 people each
• A focus group of 13 family carers from across England and Wales
• Six interviews with children and teenagers with complex disabilities
• Six ‘good practice’ case studies, two of which involved a visit to a service, with structured observation of services (where applicable), and semi-structured interviews with a range of staff and stakeholders. A further four case studies were conducted remotely
• The project also benefited from an expert advisory board, which met throughout the course of the research

Statement of Support from The True Colours Trust, The Council for Disabled Children and Together for Short Lives 

The Demos report published recently highlights the continual challenges faced by the most severely disabled children and children with life-limiting and life-threatening conditions and their families to live an ordinary life.

These children and their families do not hope for the extraordinary, but the day to day: health care; education and friendship and for those who will die young to have the very best end of life care. Without greater policy focus and clearer communication by government and providers there is a risk that the needs of these children and their families fall through the cracks.

The report highlights areas for policy makers and the wider sector to concentrate on to ensure that current and future resources in the sector are focused and deployed to ensure that these needs are met. Families should not have to spend precious time fighting for these.

The True Colours Trust, The Council for Disabled Children and Together for Short Lives are fully supportive of this valuable report and are determined to work with the wider sector to promote the needs of these children and their families to have the life that they should expect. We ask the government to consider carefully the report’s findings and use it to inform policy and implement change.