Clear framework for services supporting children with the most severe conditions

Children and young people in England affected by severe disability, injury or illness will be better supported thanks to a new national framework to help local services make clinical assessments, published by Care Services Minister Phil Hope.

Professor Jane Noyes, an expert in researching what works for disabled children and their families, at Bangor University's School of Healthcare Sciences, led in the evaluation that underpinned the development of this important new framework. The evaluation was undertaken in 12 areas in England and involved following 137 children as they and their families were assessed for funding to pay for additional care and support at home.

The framework will assist the several thousand children in England who need care like long-term ventilation or dialysis. They, as well as children with neuro-degenerative conditions, such as muscular dystrophy and life-limiting and life-threatening conditions may get the care they need through existing mainstream and specialist services. Sometimes, their needs may be so specific that local services will develop a bespoke package of continuing care for each individual.

The new framework sets a clear process for assessing the healthcare (nursing and clinical) needs and for local services to agree how these needs will be met. Usually, needs are met by the local NHS Primary Care Trusts but in some cases local authority social care services will also be required. The framework will help local services understand their responsibilities and make the whole process of creating a bespoke care package smoother.

Care Services Minister Phil Hope said:

“The slightest delay in getting the right support to children and young people with the most debilitating conditions can be very upsetting for them and their families. Very often local services do a great job and I want to keep decisions as close to each child as possible. This framework sets out a standard process for assessing needs so local services can focus on delivering support.”

Professor Jane Noyes said:

"Families of disabled children with serious ongoing health problems have consistently experienced problems in getting funding from their local Primary Care Trust to fund the ongoing care that children require. Parents said that the application and assessment process varied depending on where they lived and the process took too long and was too complicated.

The new framework should help nurses, doctors and other people such as social workers undertake assessments to access continuing care funding using the same approach. The new framework sets out a clear assessment framework and a tool to help nurses and doctors make decisions and recommendations.

Although the new framework only currently applies to England, representatives from the Welsh Assembly Government attended meetings and expressed interest as to how the new Framework could inform policy development in Wales."