KidsAudiologist

Archive for the ‘Uncategorized’ 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

Over the years this is a question I have heard a lot at NDCS. Recently I notice that additionally more families are being asked to pay for copies of test results and letters when they request them (for example when they apply for Disability Living Allowance). A symptom of the increasing financial pressures that the NHS is under I suspect.

The answer is that The NHS Plan (2000) made a commitment to patients/carers to receive copies of all letters written about them (p89). This was followed up by Copying letters to patients: good practice guidelines (2003).

So parents have a right to be offered copies of letters between clinicians that are written about their children. This guidance says that raw data (test results) should be explained in person and not copied to patient and technically an audiogram is ‘raw data’. They therefore don’t have a right to copies of the audiogram/other test results. However, provided parents have been given a proper explanation of what they mean then most welcome having copies themselves and most audiologists are more than happy to print off an extra copy at the time of the appointment. My feeling is that parents really should be given copies of audiograms with full explanations.

If parents haven’t been given an audiogram or letter that they need for another purpose (for example their DLA application) then the NHS is legally entitled to make a ‘reasonable’ charge for providing copies of anything in the patients files that isn’t already a ‘right’ for them to have. The charge should cover admin time, photocopy and postage charges.

My Life, My Health Logo

Today saw the launch of  My life, My health – a call on GPs and surgeries to be more deaf aware and ensure deaf teenagers get the health support they need. The My life, My health campaign has been developed by the National Deaf Children’s Society and its Young People’s Advisory Board, is supported by the Royal College of Paediatricians and Child Health, and is the first health campaign of its kind led by deaf young people. More than 200 deaf children and young people from across the UK were consulted to find out about their experiences of using health services, including visiting their GP.

The findings, published in a new report, suggest there is currently a worrying lack of deaf awareness in GP surgeries. Many health care professionals do not know how to communicate with a deaf child or young person. Surgeries do not always provide deaf friendly services, such as the option to book appointments by text message, or ensure sign language interpreters are available.

Findings also suggest deaf teenagers struggle to know when their name has been called, or understand what is happening during their appointment. Other deaf teenagers lack confidence in managing their own health care appointments.

Lucy Read, Head of Children and Young People’s Participation at the National Deaf Children’s Society, said: “Young people have the right to high quality, accessible health care services. However, this is not always their experience and certainly not for those from vulnerable groups, such as deaf teenagers. There are 45,000 deaf children and young people in the UK and it is unacceptable that their health should be compromised simply because they are deaf. It is vital they receive the right health support from an early age, as this also ensures they can go on to become independent adults.”

Dr Hilary Cass, President, Royal College of Paediatrics and Child Health said: As child health professionals, we have to get better at communicating with deaf teenagers. Simple steps such as making information more accessible can make a real difference to the lives of these young people.

“It’s shocking that too many deaf young people are at risk of poorer health outcomes as adults simply because they are deaf. There is no reason why, with the right support, deaf teenagers can’t be as healthy, informed and independent as other young people. This report and its recommendations provide a timely reminder that there is still a way to go to ensure that deaf children and young people have more voice, choice and control over their healthcare.”

The My life, My health campaign highlights three key areas that need to be addressed: better deaf awareness; improved access to information and ensuring the right communication support is in place; supporting deaf teenagers to become more independent in managing their own health care.

The National Deaf Children’s Society and its Young People’s Advisory Board have created a range of resources for GPs, deaf teenagers and their parents, including top tips for GPs, and a wallet sized card that deaf teenagers can show their GP with details of their communication needs. More information, including a campaign video and resources, can be found here.

Follow the day’s events on Twitter at #mylifemyhealth

(Source NDCS Press Release 4th February 2014)

NDCS are calling on the Department for Education to intervene to protect specialist services for deaf children as a matter of urgency. We know that local authorities are cutting these services to save money, without being transparent about their decisions and actions. These services are not a luxury. They are vital to deaf children’s education, health and wellbeing.

We need 100,000 signatures. Please sign today and share with your friends and family. Thank you.

CLICK TO SIGN HERE!

Protecting specialist services for deaf children

Update: Netbuddy has now merged with Scope. For more information on learning disabilities and hearing loss see new post here.

I’ve been working with the fantastic Netbuddy website which is full of handy tips and bright ideas from parents, carers, teachers and therapists with experience of learning disability and autism.

Hearing loss is known to occur in a large percentage of people who have a learning disability. But hearing problems may be unrecognised or undiagnosed because behaviours associated with hearing loss may have been thought of as being part of the learning disability, or because local audiology services are not accessible to them.  Unrecognised and unmanaged hearing loss can cause or contribute to speech or language delays, difficulties learning and reading, and cause difficulties communicating with others. Hearing loss can therefore have a significant impact and exacerbate the effects of an individuals learning disability.

So this week we launched a new Audiology Info Pack giving information on the impact of undiagnosed or unmanaged hearing difficulties, signs of ear or hearing problems to look out for, and top tips for parents and carers. Netbuddy also have an active forum to ask questions and get support from other families, including an ‘Ask the expert’ section where professionals will reply to your queries. Catch me here if I can help.


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

  • 71,518 hits