Transition to adult hearing services
Here are links to key documents and further guidance about transition and resources for use with deaf young people during transition. You will also find information on the particular challenges that deaf young people and their families describe when transitioning from children's to adult hearing aid services.
- Definition of transition:
- Challenges described by deaf young people and their families during transition:
- What deaf young people and their families welcome:
- Implementing transition services:
- Commissioning guidance
- Useful NDCS resources
- Useful resources produced by other organisations
Definition of transition:
"Transition can be defined as a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems." (Transition: getting it right for young people, DfES & DH, 2006)
Government policy emphasises that this is not solely a matter for healthcare professionals, since long-term conditions also have important educational, social and financial implications. Transition planning in the Health Service must secure optimal health care for the young person but it is equally important to ensure that their wider needs and their aspirations for their future are at the centre of the planning process.
Challenges described by deaf young people and their families during transition:
- Up to 40% of deaf young people will have one or more additional health needs. These conditions may interact and impact on other aspects of their lives.
- Young people with complex disability may have particular problems when there is no equivalent adult service able or willing to take on their long term health care and medical supervision.
- Deaf young people are often used to seeing the same small audiology team who know them well and may see a doctor regularly.
- Deaf young people often describe problem with communication when they move clinics, both one-to-one with clinicians and when attempting make appointments.
- Severe/profound hearing loss from childhood is a rare occurrence in an adult clinic and deaf young people may feel that staff don't fully understand their particular needs.
- Deaf young people are often confused by the differences between children's and adult services. For example why do they need to change hearing aids simply because the adult service uses different models, why does their hearing aid prescription change from DSL to NAL, why do they need to see a GP for ear syringing when they have always had microsuction at the clinic before, why can they no longer call or email their audiologist directly with a problem but need to go through a general hospital booking system, and understanding open repair clinics when they are used to ringing up and collecting a replacement hearing aid ready programmed when needed?
- Some deaf young people are unable to make appointments themselves using a telephone only booking system and resent needing to ask another person to make appointments for them.
- Deaf young people are often confused by the differences between services in different areas such as when they live away from home during higher or further education.
- Deaf young people are frustrated by needing to repeat their story each time they see someone new and there are particular challenges when notes aren't transferred between services.
- Deaf young people describe feeling very uncomfortable in general waiting areas with elderly patients.
- Deaf young people vary enormously in their development and readiness to move on to adult services. They welcome flexible transfer ages and being fully involved in the decision when to change.
- Deaf young people have been left with no service provider when the children's service ended at 16 and their new adult service didn't take them until they were 18.
What deaf young people and their families welcome:
- Flexible transfer ages taking into account the young persons needs and wishes. In education the formal transition planning process starts at 14 and it may be appropriate to begin discussing audiology transition around the same time.
- Support in acquiring the knowledge and skills needed to navigate and make best use of adult hearing aid services.
- Holistic information on all aspects of health, educational/vocational and social needs into adulthood.
- Being given the opportunity to foster independence by talking to them directly and maybe without the parent present.
- Being able to take more control and increasing self-management.
- Having a named person/transition worker they can contact with any problems.
- Not being talked to like a child and feeling that clinicians are talking to their parents instead.
Implementing transition services:
- Poorly planned transition from children’s to adult health services can be associated with increased risk of non-adherence to treatment and loss to follow-up, which can have serious consequences for the young person.
- Successful transition planning and programmes are crucially dependent on collaboration between children’s and adult services as well as engaging with young people to fully understand what they need and expect from the process.
- Transition should be viewed as a process and not as a single event and needs to be flexible enough for individual needs to be met.
- Staff working with young people should balance the need of the young person for privacy and confidentiality, and their wish to take increasing responsibility for their own health care, with the need for their parents to have sufficient information to provide the support that young people often require.
- There are several models for good transition and there is no clear evidence that one is superior.
This leaflet is written for those responsible for commissioning audiology services for teenagers and young adults, in particular those who have grown up with congenital or acquired permanent childhood hearing impairment (PCHI). It highlights the key differences between paediatric and adult audiology care, and the main challenges deaf young people meet when transitioning between services. It contains quality statements that should be considered during the commissioning process to ensure appropriate services are available to meet the needs of young adults.
Useful NDCS resources
Cochlear implants; young people's views
Research funded by NDCS and carried out by the Ear Foundation into the views of young deaf people who use a cochlear implant.
NDCS / Ear Foundation research into young people's views on cochlear implants
Getting Ahead training programme
Our Getting Ahead training programme is for deaf young people aged 13 to 19. It aims to make a positive contribution to reducing the barriers this group may face and preparing them for the challenges ahead. For more information on the programme click here.
Quality standards and good practice guidelines in transition
The NDCS Quality Standards 'Transition from paediatric to adult audiology services: Guidelines for professionals working with deaf children and young people' (2011) are available to download Quality Standards in Transition (NDCS, Oct 2011)
NDCS/NHS Devon Transition Project
'Over to You' Project
Over to you was a Department of Health funded project that NDCS undertook in partnership with the boroughs of Newham, Tower Hamlets and Hackney in London between April 2010 and March 2011. Working with volunteers running events for deaf young people aged 13-16 years, the project aimed to improve and record deaf children and young people’s experiences of audiology services. You can download the final report from the project here.
'Who am I?' Project
Who am I? was a three-year project - supported by The National Lottery through Big Lottery Fund - for young deaf people aged 13 to 19-years-old and their parents living in Scotland which ended in 2011. The project aimed to improve young deaf people’s self-esteem so they feel comfortable with their deafness and confident about being independent in a hearing world, and encourage parents to feel positive about their child’s transition towards independence and be confident in supporting them. The Who am I? project has produced two booklets, one for parents featuring tips from parents and young deaf people, and one by young deaf people for young deaf people. Both come with a DVD featuring deaf young people and their families telling their own stories, the challenges they have faced and how they have overcome them. The DVD shows people that being deaf is not an obstacle to having a great life and positive future. You can download the booklets 'Who am I? Deaf young people share their stories' here and Who am I? Parent to parent here.
To view a Powerpoint presentation given to the East London Paediatric Audiology Interest Group in November 2009 click on the link below.
Useful resources produced by other organisations
Aiming High for Disabled Children (AHDC): Transition
Resources available here including A Transition Guide for all Services: Key Information for Professionals about the Transition Process for Disabled Young People (DH/DCSF, 2007) and Transition: Moving on well A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability (DCSF/DH, 2008)
Department of Health
Publications, resources and literature review on transition available here including Transition: Getting it Right for Young People (DH, 2006)
National Sensory Impairment Partnership (NatSIP)
NatSIP published '14+ Transitions Protocol and Recommendations for Young People with Sensory Impairment' in February 2012. The document is available to download here.National Transition Support Team
Aiming High for Disabled Children (AHDC), launched in May 2007, was the government’s transformation programme for disabled children's services in England. One of the issues identified in AHDC was that more work was needed to improve and co-ordinate services for disabled young people in transition to adult life. To address this, the government funded the Transition Support Programme, which aimed to raise the standards of transition in all local areas.
The Transition Support Programme consisted of two main elements:
- The National Transition Support Team, which coordinated the work with local authorities, PCTs and regional advisers and existing experts; and
- Supported for change at local level through a combination of direct grants and regional adviser activity.
The Transition Support Programme ran from October 2008 – 31 March 2011.Resources developed as part of the Transition Support Programme are available from the Transition Information Network (TIN) or here
In November 2011 a new government programme was announced - Preparing for Adulthood.
Not Just a Phase: A Guide to the Participation of Children and Young People in Health Services
Is published by the Royal College of Paediatrics and Child Health and is available to download here.
Participation Works is a consortium of six national children and young people's agencies that enables organisations to effectively involve children and young people in the development, delivery and evaluation of services that affect their lives.
For further information and to download useful resources click here
Preparing for Adulthood
Preparing for Adulthood is a two year programme (from November 2011) funded by the
Department for Education as part of the delivery support for
'Support and aspiration: A new approach to special educational
needs and disability' green paper.
The Preparing for Adulthood programme is delivered by a partnership between the National Development Team for inclusion (NDTi), the Council for Disabled Children (CDC) and Helen Sanderson Associates (HSA).
The partnership brings together a wide range of expertise and experience of working with young people and families at a local and national level and across government, to support young people into adulthood with paid employment, good health, independent living and community inclusion.
Transition: Getting it Right
Transition: Getting it Right, a film by Greg, Toyah, Craig, A.J. and Chris. DVD produced by a group of young people about their own experiences going through transition and available free of charge from the Department of Health here
Transition Information Network
A website for parents, carers and people who work with and for disabled young people in transition to adulthood. The Transition Information Network (TIN) is an alliance of organisations and individuals who come together with a common aim: to improve disabled young people's experience of transition to adulthood. TIN is a source of information for disabled young people, families and professionals. They provide information through the website, magazine, e-newsletter and seminars. For more information click here.
Triangle - training pack 'Three Way Street'
Communicating with children is often a three way event, involving a parent or carer or other accompanying adult. This pack provides a model for three way communication in which the child is central, and demonstrates practical, evidence-based strategies to establish direct communication with a child in the presence of another adult. Three Way Street is relevant for a multi-professional audience and can be used at different levels with social workers, doctors, nurses, teachers, early years workers and others working with children.
Triangle is an independent organisation working directly with children and families, giving expert opinion to the courts and teaching and advising parents and professionals.
For further information and to view a 2 minute introduction to the film click here
Understanding what matters; A guide to using patient feedback to transform services (DH, 2009)
This guide sets out best practice in terms of collecting, analysing and using patient feedback to transform services. It also includes examples of how the NHS is already using feedback from patients to get results. Further information here
You're Welcome; Making health services young people friendly (DH, 2007)
The You're Welcome quality criteria sets out principles that will help health services become young people friendly. It covers areas to be considered by commissioners and providers of health services. Content is based on examples of effective local practice. This second edition includes a new section covering Child and Adolescent Mental Health Services. You’re Welcome has been included in the NHS Operating Framework for 2009/10 and highlighted in DH/DCSF Healthy lives, brighter futures - the government strategy for children and young people’s health. Further information here.