Confusion over NHS reform puts disabled children at risk
20 October 2011
Campaigners urge Andrew Lansley to take urgent
action.
Every Disabled Child Matters and The Children’s Trust at
Tadworth have today (Monday 24th October) launched a new report –
Disabled Children and Health Reform: Question, Challenges and
Opportunities. To mark this launch charities, health organisations
and professionals who work with disabled children have issued a
statement calling for urgent Government action on NHS reform for
disabled children.
The current reform of the NHS is implementing fundamental, whole
system change – and represents a new opportunity to address health
system failures for disabled children. However, there has been no
mention of disabled children – or even the child health system –
within the Health & Social Care Bill.
As the Health & Social Care Bill enters House of Lords
Committee tomorrow (Tuesday 25th October) , campaigners for
disabled children are calling on Andrew Lansley and Earl Howe to
take the historic step of embedding child health as an NHS
priority.
Disabled Children and Health Reform is based on a series of
interviews with families with disabled children and health
professionals from across the country. It reveals the system
failures that stop disabled children getting vital health support.
It goes on to warn that confusion over the way the reformed system
will meet the needs of disabled children is having a further
negative impact. As one parent puts it: “Most of the general public
think that when you have a disabled child you get everything you
need. You don’t.”
System failures highlighted in Disabled Children and Health
Reform include:
• Delays to getting equipment – e.g. wheelchairs
• Restrictions on vital support – e.g. nappies for children with
continence issues
• Disputes over who funds the service
• Poorly coordinated appointments
• Poor communication across the system
• A confusing transition to adult services
Christine Lenehan, EDCM Board Member said:
“Disabled children rely on the NHS to keep them healthy and to help
them to lead ordinary lives. However, in most cases, lack of
coordination and accountability within the system stops them from
getting the vital services they need. The Government has a choice
to make between acting now to use the opportunity of reform to
create a system that works better for disabled children, or
perpetuating a system which is designed for adults and leaves
families with disabled children struggling to fill the gaps.”
Andrew Ross, Chief Executive of The Children’s Trust,
Tadworth said: “The Government’s health proposals have not
yet provided sufficient detail about how children with the most
complex needs will continue to access specialist services, yet
these children and their families have the most at stake as the
health system undergoes radical change. We must not allow important
services to become accidental casualties of reform.”
-ENDS-
Notes to editors
1) Disabled Children and Health Reform is available here:
http://www.ncb.org.uk/edcm/health_reform_report.pdf
2) To mark this launch, the following charities, health
organisations and professionals who work with disabled children
have issued a statement in support of the report’s
recommendations:
• Hilary Emery, Chief Executive, National Children Bureau
• Jolanta Lasota , Chief Executive, Ambitious About Autism
• Professor Gillian Baird OBE Chair, British Academy of
Childhood Disability
• Professor Terence Stephenson, Chair, Royal College of
Paediatrics and Child Health
• Dame Clare Tickell, Chief Executive, Action for Children
• Linda Lascelles, Chief Executive, Afasic • Sarah Brennan,
Chief Executive, Young Minds
• Barbara Gelb, Chief Executive, ACT & Children’s Hospices
UK
• Carol Foyle, Director of Children, Youth and Family Services,
The Westminster Society
• Monica McCaffrey, Director, Sibs
• Lorraine Clifton, Chief Executive, CLIC Sargent
• Professor John Visser, Interim Chair, Social, Emotional and
Behavioural Difficulties Association • Kevin Williams, Chief
Executive, KIDS
• Janet Leach, Head of Enfield Joint Service for Disabled
Children, London Borough of Enfield
• Parmi Dheensa, Executive Director, Include Me TOO
• David Cowdrey, Head of Campaigns and Public Policy, Guide
Dogs
3) Key quotes from parents in Disabled Children and Health
Reform to illustrate barriers:
• Delays to getting vital equipment “My daughter has a helmet
and boots supplied by the Child Development Centre. She’s outgrown
the helmet now and it took them two months just to make an
appointment to measure her head. In the meantime, she’s confined to
her wheelchair. They said they had the money to do it, but didn’t
have the means to order it.”
• Disputes over who funds the service “Sometimes the local
authority say, “Well, that’s a Health issue and so the PCT should
pay.” Then the PCT turns round and says, “No, actually that’s an
Education issue.” It feels like we’re having to fight and it wastes
valuable time because we have to wait for the local authority and
the PCT to meet somewhere in the middle about something which could
be helping and making a difference now.”
• Lack of focus on the child health system “What’s so sad is the
years that have been lost because there doesn’t seem to be any
clinical leadership for services for disabled children or even
children. And there haven’t been any targets that they need to
reach and so they’re not interested. They’re only interested in
targets and services for adults.”
4) Every Disabled Child Matters (EDCM) is the campaign to get
rights and justice for every disabled child. It has been set up by
four leading organisations working with disabled children and their
families – Contact a Family, the Council for Disabled Children,
Mencap and the Special Educational Consortium. Find out more and
sign up to support the campaign at www.edcm.org.uk
5) The Children’s Trust, Tadworth is a national charity
providing highly specialised services to disabled children and
young people across the UK. These services include expert nursing
care for children with complex health needs, rehabilitation and
support to children with acquired brain injury and residential
education for pupils with profound and multiple learning
difficulties at The School for Profound Education. Charity
registration number :288018. Find out more about the work of The
Children’s Trust, Tadworth at www.thechildrenstrust.org.uk
