Susan Daniels OBE Chief Executive of NDCS Paediatric audiology The patient’s perspective – deaf children & their families Susan Daniels OBE Chief Executive of NDCS

Policy Context National Services Framework for Children, Young People and Maternity Services Every Child Matters Early Support Aiming High for Disabled Children

Aiming High for Disabled Children Core offer to encompass minimum standards on: Information Transparency Participation Assessment Feedback

Responsive services & timely support Easily accessible Designed around the child & family Delivered in a co-ordinated & timely manner

Population data “ A clearer picture of the disabled children population and disabled children’s needs is essential for effective planning, commissioning and provision of services”

Performance Management Evaluative culture Quality Standards

Empowering disabled children & their families Improved provision of information

Empowering disabled children & their families Improved provision of information

Empowering disabled children & their families Improved provision of information Greater transparency in decision making Supporting disabled children to shape services

Family Friendly Services Families want professionals to respect their knowledge of their child Families want up to date, accurate & impartial information Good communication between services & individual professionals

Family Friendly Services Consistency of care i.e. key workers Services to be truly responsive to families’ needs Family friendly environment A culture of evaluation learning CHSWG to involve all stakeholders and be a strategic force for change

Children’s and young people’s views

Evidence from consultations The NHSP Children’s Consultation 2007 Cochlear Implants: The Young People’s Perspective, 2007 NDCS Youth Consultation 2007 (Children & young people aged 9-18 years)

The NHSP Children’s Consultation 2007 Children dislike: Long waiting times Lack of suitable games/toys/books Waiting alongside adults Long waiting times for ear moulds Ear mould impressions

The NHSP Children’s Consultation 2007 Children like: Being asked their opinions Being given choice (e.g. colour of ear mould) Child friendly waiting areas Staff who can communicate with them – BSL users Meeting other deaf children & gentle audiologists!

Research by: Alexandra Wheeler, Sue Archbold and Susan Gregory from The Ear Foundation. Funded by the NDCS

Cochlear Implants All cochlear implant centres contacted 29 young people interviewed, 13-17 years of age Findings: Most of the young people did not really understand how the implant works 66% could only give a limited explanation 10% could give a full explanation

NDCS Youth Consultation 2007 Do deaf children need more information and advice?

NDCS Youth Consultation 2007 What information and advice would you like to have? (9-13)

NDCS Youth Consultation 2007 What information and advice would you like to have? (14-18)

Clear need for more information in relation to deafness and technology causes of deafness implications of deafness how hearing aids work environmental aids using everyday technology

Conclusion Meaningful consultation with stakeholders Active participation of children & families in shaping of services