House of Commons - Health - Written Evidence

Select Committee on Health Written Evidence

Evidence submitted by the National Deaf Children's Society (AUDIO 18)

INTRODUCTION AND EXECUTIVE SUMMARY

1. The NDCS is the only national charity that is solely dedicated to the support of the UK's 35,000 deaf children and their families.

2. We welcome the Committee's inquiry into audiology services, which are of critical importance to deaf children and young people's ability to achieve their full potential in education and transition to adulthood.

3. The importance of early intervention following a diagnosis of deafness for children cannot be over-estimated. Time spent on waiting lists for children means time lost in development of crucial speech and language skills, with a knock-on impact for their ability to achieve at school.

4. This submission contends that while there has been significant and welcome investment in children's audiology services, much remains to be done. There are particular problems due to a lack of data to measure waiting times, the exclusion of audiology services from government schemes to support disabled children and a danger of children's services suffering a lack of available staff.

5. This submission recommends the following actions to be taken by Government:

— Introduction of a uniform system to record waiting times for children's audiology services, starting from GP referral and ending with hearing aid fitting.

— The inclusion of audiology services in Children's Trusts.

— To ensure bi-lateral cochlear implantation is made available where clinical advice and parental consent exists that the procedure is in the best interests of the child.

— Investment in training for audiologists who work with children and young people.

— An action plan to address the ageing demographic of doctors currently working with children and young people.

— Lift six month mandatory "watch and wait" times currently in place for some audiological interventions, for example grommet operations.

RESPONSE TO THE INQUIRY'S QUESTIONS

Whether accurate data on waiting times for audiology services are available?

6. No data exists to measure the wait between GP referral to fitting of a hearing aid. This is the full patient journey between diagnosis of a problem and the NHS response. Rather, the Department of Health only measures the time between GP referral and diagnostics (hearing test), which therefore presents a distorted picture unreflective of the actual patient experience.

7. This situation is exacerbated by a wide range of differing data recording practices throughout England, with some areas measuring waiting times from GP referral to hearing aid fitting but others only measuring GP referral to hearing assessment. [45]

8. The situation is further complicated by hospital targets for meeting "new" patient referrals. This results in follow-up appointments needing to be made via another GP referral as opposed to directly with the audiology department in order that they might be classified as a new referral. This is a waste of NHS resources and, crucially, results in lost time for children who urgently require this support. [46]

9. Therefore data is neither accurate nor easily understood. A uniform system of data recording for the full patient journey (GP referral to hearing aid fitting) is urgently required for the NHS as a whole, in order to measure waiting times that equate with the actual patient experience.

Why audiology services appear to lag behind other specialities in respect of waiting times and access and how this can be addressed?

10. The vital nature of audiology services for deaf children and young people is not widely appreciated; as a consequence they are not factored into multi-disciplinary programmes in place for disabled children.

11. This has an immediate impact on deaf children's life chances, and a long term impact on paediatric audiology services. It results in missed investment for audiology services and a resulting lag behind other specialities that do benefit from inclusion in joined-up programmes and the consequent investment involved.

12. The importance of audiology services to deaf children and young people cannot be overstated. Their quality and capacity literally determine life chances. Early identification and appropriate management will lessen the impact of deafness on the child, the child's family and on society. [47]Therefore their absence from programmes in place for disabled children is a critical gap which requires urgent action. This is particularly the case for Children's Trusts, the mechanism by which Local Authorities are obliged to provide minimum standards of service for disabled children, from which audiology services have been excluded.

13. The exclusion of audiology from the NHS 18-week wait target has also increased the gap between audiology services and other specialities in terms of waiting times and access. Indications are that many children are now on multiple waiting lists (for example ENT as well as audiology) as GPs attempt to get access to the service for their patients in the quickest possible way. [48]

Whether the NHS has the capacity to treat the number of patients waiting?

14. Capacity is lacking in several critical areas of children's audiology services, with particular problems faced by children experiencing long waiting times for cochlear implants. During 2006 at least two specialist cochlear implant centres in London temporarily closed their doors to new referrals due to capacity issues. [49]Other children have been refused bilateral implants despite clinical and parental judgement that they are in the best interests of the child.

15. NDCS welcomed the MCHAS programme and believes that the introduction of digital hearing aid technology and associated good practice guidance transformed audiology services for children. However the practical reality is that the first fitting of digital hearing aids take longer than their analogue predecessors, and along with the surge in demand for adult hearing aid services has had a knock-on effect of lengthening childrens' waiting times. [50]

16. Following the roll-out of the Newborn Hearing Screening Programme (NHSP) early diagnosis of deafness has dramatically improved but early years audiology services have struggled to keep pace. [51]As a result many audiology services do not have the capacity to respond with sufficient speed or expertise in providing access to information, support and advice to parents about possible choices for early intervention.

17. There is a very limited pool of audiologists experienced in working with very young babies, children and their families. There has been no investment in training for audiologists who work with this client group.

18. The majority of doctors working with deaf children are in the latter stages of their careers, with very few young trainees entering the profession. This will result in serious consequences for capacity in the near future if left unaddressed. [52]

19. A lack of capacity to treat patients waiting for audiological interventions requiring surgery is also indicated by blanket restrictions being applied by the NHS throughout England. Examples include grommet operations which are now subject to six month "watch and wait" times before the decision to proceed with surgery is taken. [53]The NDCS believes that while exercising caution before any surgery is advisable, applying blanket restrictions which add to the referral and waiting list time for the surgery itself and therefore delay a child's treatment for anything up to a year is excessive.

Whether enough new audiologists are being trained?

20. There are currently over 300 BSc (Audiology) degree students of a possible 800 places. The BSc is a new route into the profession, students following a four year training programme before becoming fully qualified. However there is already evidence that frozen posts and funding limitations across the NHS has resulted in difficulties securing work-based practical placements during training and newly qualified audiologists unable to secure jobs. [54]

How great a role the private sector should play in providing audiology services?

21. The fitting of hearing aids and the expected outcomes are fundamentally different for adults and children. Young children who are born deaf or develop deafness early in life will not be able to develop speech and language skills without the use of the most appropriate hearing aids. These need to be fitted, evaluated and managed by fully trained staff in clinical, education and home environments. [55]Therefore NDCS believes that children's audiology services must remain within the NHS. We believe that those working with deaf children must be suitably qualified to MSc level with relevant practical experience. [56]Although training routes for Registered Hearing Aid Dispensers are likely to change significantly in the near future, existing personnel are not trained to provide audiology services to children and have no facilities suitable for testing young children. At the current time it is not appropriate or desirable for children to be referred to the private sector.

22. A large proportion (40%) of deaf children have additional or complex needs in addition to their deafness. A deaf child's needs are therefore best met by experienced multidisciplinary teams. Involvement of the private sector is not desirable and would run counter to the need for multi-agency working required for children for whom deafness is one of several factors requiring intervention.

Chris Underwood

The National Deaf Children's Society

7 February 2007

www.ndcs.org.uk/information/professional_focus/professional_publications/health_professionals/quality_3.htm

45 NHS Audiology, Building the Service, British Academy of Audiology, 2006 http://www.baaudiology.org/new.htm-accessed February 2007. Back

46 NDCS communication with ENT consultants and service providers, February 2007. Back

47 Markides, 1986; Meadow-Orlans, 1987; Ramkalawan & Davis, 1992; Kuhl et al, 1992; Yoshinga-Itano et al, 1998. Quality Standards in Paediatric Audiology; Guidelines for the early identification and audiological management of children with hearing loss, NDCS, 2000 Back

48 NDCS communication with ENT consultants and service providers, February 2007. Back

49 NDCS communication with families and teams affected. Back

50 NHS Audiology-Building the Service, British Academy of Audiology, 2006 see www.baaudiology.org/new.htm Back

51 NHSP Annual Report 2005-06. See www.nhsp.info/cms.php?folder=97 Back

52 Children's Audiology Services; A multi-professional review in partnership with the NHSU, Royal College of Paediatrics and Child Health, 2004 see www.rcpch.ac.uk/publications Back