KidsAudiologist

Archive for the ‘transition’ Category

I have been asked to speak a few times on transition of young deaf people to adult hearing services – on the challenges they report and what good practice in transition looks like. I start by saying that I believe good transition is reliant on good participation of children and young people – listening to their views, meaningfully involving them in decisions that affect their care and in helping shape the services they receive. But I’ve also put together this post to answer some of the questions I get asked and signpost to other useful resources.

(This information was previously available on the NDCS website but has been re-published here with updated links and resources.)

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.

Useful NDCS resources

Commissioning guidance

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.

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.

Information and events for young deaf people aged 14+

For a guide to all the information resources and events NDCS runs for young people over the age of 14 years click here.

The NDCS Buzz website also has lots of information  for young people.

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).

NDCS/NHS Devon Transition Project

During 2009-10 NDCS and NHS Devon undertook a joint project as part of the NHS Improvement Pilot Projects. A copy of the poster presentation is available here and the final report is available here.

‘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.

NDCS presentation

You can download a presentation I gave in February 2016 on transition here.

 

Useful resources produced by other organisations

Transition arrangements for young people with complex health needs from children’s to adult services

This themed review by the Care Quality Commission looked at the arrangements made for children with complex health needs as they move from children’s to adult services. Download copies of the report From the pond into the sea; Children’s transition into adult health services 

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.

Action Plan on Hearing Loss 

NHS England & Department for Education published What Works: Hearing Loss and the Transition to Adulthood (2017).

Preparing for Adulthood

The Preparing for Adulthood programme (PfA) is delivered by the National Development Team for inclusion (NDTi). The programme is funded by the Department for Education as part of the Delivering Better Outcomes Together consortium.

Not Just a Phase: A Guide to the Participation of Children and Young People in Health Services

Plus updated resources to support the guide published by the Royal College of Paediatrics and Child Health are available to download here.

Participation Works

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

Transition Information Network

The Transition Information Network is a specialist network of the Council for Disabled Children set up to provide targeted information and resources about transition through online resources, publications and events. It is a source of information and good practice for disabled young people, families and professionals. For more information click 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.

 

 

 

Advertisements

Twitter Updates

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 42 other followers

Blog Stats

  • 70,850 hits