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

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

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

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

6. 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”

7. Performance Management
Evaluative culture
Quality Standards

8. Empowering disabled children & their families
Improved provision of information

9. Empowering disabled children & their families
Improved provision of information

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

11. 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

12. 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

13. Children’s and young people’s views

14. 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)

15. 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

16. 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!

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

18. Cochlear Implants All cochlear implant centres contacted
29 young people interviewed, 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

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

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

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

22. 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

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