Date Published: 30 November 2005

New UK guide improves life for children with complex disabilities

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The inequalities faced by disabled children will be tackled by a new guide, launched by the UK Department of Health today.

It will ensure that children with complex disabilities receive better, more co-ordinated education, health and social care so they can live the fullest life possible.

Too few areas are achieving best practice this guide will help services improve. Key to this is giving families more choice and involvement in the way care is delivered.

The new guide, launched today by Care Services Minister Liam Byrne and DfES Schools Minister Andrew Adonis, illustrates the experience of a baby born prematurely and diagnosed with cerebral palsy and epilepsy. The story is taken from the premature labour of Maria's mother all the way through to Maria growing up into adulthood.

Speaking at a conference on progress with the Children's National Service Framework, Liam Byrne said:

" The most disabled children with the most complex needs are at the greatest risk of unequal treatment.

_ Our ambition is to create a Britain of equal life chances and key to this is better healthcare for all our children, especially those with complex disabilities who need it most."

Lord Adonis, Schools Minister, at DfES said:

" To improve outcomes for disabled children we must change the way that services are delivered. Services must work together and be designed and delivered around the needs of the child and their family. The huge programme of change we are undertaking within children's services should make a significant difference to the life chances of children with complex disabilities."

The guide is part of series produced to help people who work with children improve their services, as outlined in the National Service Framework for Children, Young People and Maternity.

The Complex Disability Exemplar aims to improve local practice in the commissioning and delivery of services for disabled children and act as a training tool for staff working with children with complex needs. Other exemplars which have helped implement the children's NSF have covered autism, asthma and chronic fatigue syndrome. Conditions have been chosen to feature in exemplars because of numbers of children and families affected, significant cause of illness and distress or wide variability in standards of practice or service provision. It highlights the importance of involving parents, who are the experts on their own child. It also advocates sharing information and greater collaboration between different agencies and professionals.

Included in the ideas outlined in the exemplar are: hospital discharge plans developed in consultation with parents, the involvement of the Child Development Centre in assessments, the allocation of a key worker to support parents and help them to co-ordinate their interaction with different professionals, the special educational needs support available, and the role of specialist services and their interaction with mainstream provision.

Christine Lenehan, Director of the Council for Disabled Children said:

" This exemplar charts Maria's journey through childhood. It demonstrates child and family centred services and joined up thinking and action. It sets a pathway for all children with complex disability. I encourage everyone to follow it."

Professor Sir Alan Craft, president of the Royal College of Paediatrics and Child Health said:

" We welcome the commitment of the DH and DFES to promote the best possible start in life, especially for these babies and children with complex needs. To make sure that no children miss out on services it is good to have a definition from the Departments of the best possible patient journey. Delivery of these services is at a local level and local services will now have a much clearer idea of what families will be expecting."

Source(s): The UK Department of Health

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