Contact us
Young People

Young People

Information for young people about 'Transition: understanding it and making it work'.

Back to homepage

Why was this research carried out?

As young people get older, children's services and units become less suitable and most young people move on from children's services to adult services. 

This project is looking at how young people with long term health conditions are 'transitioned' to a new service.

What is transition?

The word 'transition' is used to describe the process of planning and moving on from children’s services.  The way transition happens and when it happens is different in different hospital and services. In this study we wanted to find out more about transition from the point of view of young people, parents and health professionals.  We wanted to know what works well, what does not work well and what could be done to improve services for young people.

Who was involved?

Four hospital trusts in London were involved in the study: University College London Hospitals, Great Ormond Street Hospital, Chelsea and Westminster Hospital and Guys and St Thomas' Hospitals.

We invited young people aged between 13 and 21 years old with a long-term health condition to take part. Young people who went the hospitals mentionned above were given information about the study by the health professionals they saw and we also asked some health charities to put information about the study on their websites inviting young people to get in touch with the study team if they were interested in taking part.

13 young people and 11 parents took part. Some young people had already moved to adult services and some were still receiving child services.

We also spoke to 21 experts from across the UK, leading on transition from child to adult care and 36 health professionals who worked at the hospitals involved in the study.

What did we do?

Workshops, focus groups and interviews were held with the young people, parents and professionals who took part.

We asked the people who took part about their experiences of transition and how they thought transition could be improved. We also carried out a review of the literature, to see what had been written about transition.

Our aim was to use the information we had gathered to develop a set of benchmarks for transition (a benchmark is a standard that services can measure themselves against to see how they are doing, where they can improve and can help services to share best practice/care). The researchers analysed the information gathered and pulled out a list of factors that were mentioned as being important when young people move to adult care, along with some examples of best care/practice in each area. The researchers worked with a group of young people and parents to select which factors should be included in the benchmarks and the examples of good care. The benchmarks were sent out to the professionals, parents and young people involved in the study for comment and were refined based on the feedback recieved. The benchmarks were sent out a final time for further comments.

What did we find out?

What did young people say?

Young people told us what was important to them regarding transition. Young people said, ‘preparation is key’; they wanted early information about transition, help to gradually take over the management of their health condition from their parents and recognition that everyone is different. Young people wanted to be treated ‘like a teenager’ – not a child, not an adult, this involved: having letters addressed to them, professionals speaking directly to them, explaining things in a way they could understand and being listened to.

The young people spoke a lot about the skills and knowledge they wanted to be helped to develop in preparation for moving to adult care. They wanted a chance to gradually practice skills such as talking to doctors without a parent there whilst still in children’s services with familiar health professionals.

What did parents say?

Parents raised concerns about their son/daughter moving on to adult services. Their main worries were about the, ‘unknown’, not knowing who will care for their son/daughter, what the care will be like and how their son/daughter will cope with taking on more responsibility for their own health.

Like young people, parents said what would help them was good communication and information about transition and having a clear plan.

What did the experts and professionals say?

The experts spoke about how, ‘things have become stuck’ and how changes need to be made in order to improve transition. These changes included ‘changing the mind-set’ of professionals through training about adolescence and the needs of young people, more ‘joined-up thinking’ across child and adult services and breaking down barriers hospital have such as a fixed age young people are moved to adult care.

The professionals discussed the barriers to putting in place transition services but also about how some of these had been overcome. Examples of initiatives to improve transition were shared such as: holding transition days for families, joint clinics with the child and adult teams and development of documentation for transition. It was evident that there was little sharing of these strategies as professionals working within the same hospitals were not aware of what colleagues from different specialities had put in place.

Benchmarks for Transition 

Using the information we gathered we worked with young people, parents and professionals to develop the benchmarks for transition. For young people and their parents to experience timely and effective transition eight factors were developed from the data: 1) moving to manage a health condition as an adult, 2) support for gradual transition, 3) co-ordinated child and adult teams, 4) services ‘young people friendly, 5) written documentation, 6) parents, 7) assessment of ‘readiness’ and 8) involvement of the GP.

Under each factor is a list of things that would show good practice in that area. For example, some indicators for Factor 1 are: a) Ensure the young person understands their health condition (including information about their treatment when they were younger and how it may affect them now and in the future) b) The young person is helped to make decisions about the management of their condition and health at a pace appropriate to their needs.

If you would like a copy of the benchmarks please contact the research team using the details on the 'contact us' page. 

Resources for young people

Below is a selection of links about health and transition you may find useful.

Information about transition:
 

Preparing for adult health services
http://www.gosh.nhs.uk/teenagers/leaving-hospital/preparing-for-adult-health-services/
Information about transition from Great Ormond Street Hospital.

Transition: Moving into adult care
http://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx
Information about transition by University Hospital Southampton NHS Foundation Trust.

'From the Pond into the Sea'
http://www.cqc.org.uk/content/teenagers-complex-health-needs-lack-support-they-approach-adulthood
Review of transition for young people from the Care Quality Commission 2014. 

Research study on transition
http://research.ncl.ac.uk/transition/index.html
Northumbria Healthcare NHS Foundation Trust and Newcastle University have developed a research programme that aims to answer this question - ‘How can health services contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood?’. This site gives more information on their work.

Stepping Up website 
http://steppingup.ie
Irish website providing information about transition for young people, including films of young people telling their 'transition stories' and 'top tips' from young people who have already moved to adult care.  


Condition specific advice for young people:

Cystic Fibrosis Trust
https://cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/transition.aspx
Information and advice about all aspects of living with cystic fibrosis including a guide on transition for young people. 

Diabetes UK
http://www.diabetes.org.uk/Guide-to-diabetes/My-life/
Section of Diabetes UK website for younger people with diabetes.

Transition in Inflammatory Bowel Disease
http://www.ibdtransition.org.uk/
Making a successful transition from child to adult care is a very important stage for all young people diagnosed with Ulcerative Colitis or Crohn’s Disease.

Children's Liver Disease Foundation
http://www.cldf-focus.org/
This website for young people has information about childhood liver disease and living with liver disease. It also features young people’s stories.

Asthma UK
http://www.asthma.org.uk/about-asthma/asthma-and-young-people/
Information for young people with asthma.

Muscular Dystrophy Campaign
http://www.muscular-dystrophy.org/how_we_help_you/publications/2246_guide_to_transition_for_13-25_year_olds_with_muscle_disease
Link to a ‘Guide to Transition for 13-25 year olds with muscle disease’. This guide provides advice about services and entitlements and signposts where to go for further information and support.

Teenage Cancer Trust
http://www.teenagecancertrust.org/
Information for young people about cancer, including young people’s stories.

The Somerville Foundation
http://www.thesf.org.uk/
Information for young people born with a heart condition. In the 16-25 year olds area on the webiste there is some information about transition and a 'Guide to Adult Cardiac Care'.

Arthritis Care
http://www.arthritiscare.org.uk/LivingwithArthritis/Youngpeople
The Arthritis Care website features a range of publications and factsheets, including this publication about moving to adult rheumatology services, http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Magazinearticles/main_content/AN126_NoLimits_transition.pdf Arthritis Care also have a dedicated help-line, see their website for details.
 

Information for young people about health related issues:

Youthhealthtalk
http://www.youthhealthtalk.org/
This is a website about young people’s real life experiences of health and lifestyle. Watch and listen to young people talking about their experiences.

NHS Choices
http://www.nhs.uk/livewell/Pages/Livewellhub.aspx
Use the links on the left hand side for ‘teen girls’, ‘teen boys’ and women’s and men’s health.

Teenage Health Freak
http://www.teenagehealthfreak.org/
This website has answers to lots of questions relating to young people’s health.

Talk to Frank
http://www.talktofrank.com/
FRANK provides a friendly, confidential and non-judgemental service to anyone wanting help, information or advice about drugs

Brook
http://www.brook.org.uk/
Provides free and confidential sexual health information, contraception, pregnancy testing, advice and counselling, testing and treatment for sexually transmitted infections.

Young Minds
http://www.youngminds.org.uk/
Young Minds is committed to improving the emotional wellbeing and mental health of children and young people by providing expert knowledge to professionals, parents and young people.
 

Young People
Parents

Parents

Information for parents about the study 'Transition: understanding it and making it work'.

Back to homepage

Why did we do this research?

The period of growing up into adulthood is known as ‘transition’. It covers all aspects of growing up including education, employment and personal relationships.

Health is just one aspect of transition and for a young person their health may not be the top priority or as important to them as doctors think it should be. Health services need to make sure they look after health issues in such a way that they integrate well with all the other parts of a young person’s life.

Understanding transition - from all standpoints 

This project looked at how young people with long term health conditions are transitioned from one service to another. In this study, we wanted to find out more about transition from the point of view of young people, parents and health professionals.  We wanted to know what works well, what does not work well and what could be done to improve services for young people.

 

What we did

Workshops, focus groups and interviews were held with:

1) Stakeholders from across the United Kingdom, leading on transition for young people from child to adult health care

2) Health professionals working with young people locally in the London area at the four study sites (from both child and adult services)

3) Young people aged 13 to 21 years old with a long-term health condition and their parents. Young people were recruited from the four study sites and through charities via newsletters and social media.

The groups/interviews focused on: experiences of transition, barriers and facilitators to transition. Additionally, the young people and parents were asked to develop a list of their ‘top 10 essential elements of transition’.

A literature review was also planned for this phase; the team were able to join an existing Cochrane review.

Creating standards that meet the needs of young people

Our aim was to write some standards/benchmarks that outline what should happen when young people move from child to adult care and we hope that the recommendations we make will be used to help plan transition services for young people in the future. 

Two researchers analysed the information gathered and pulled out a list of factors that were mentioned as being important when young people move to adult care, along with some examples of good care/practice in each area. The researchers worked with a group of young people and parents to select which factors should be included in the benchmarks and add more examples of good care. The benchmarks were sent out to all the experts, professionals, young people and parents involved in the study for comment and were refined based on the feedback received. The refined benchmarks were sent out again to everyone involved for final comment.

Our findings

Young people said...

Young people told us what was important to them regarding transition. Young people said, ‘preparation is key’; they wanted early information about transition, help to gradually take over the management of their health condition from their parents and recognition that everyone is different. Young people wanted to be treated ‘like a teenager’ – not a child, not an adult, this involved: having letters addressed to them, professionals speaking directly to them, explaining things in a way they could understand and being listened to. The young people spoke a lot about the skills and knowledge they wanted to be helped to develop in preparation for moving to adult care. They wanted a chance to gradually practice skills such as talking to doctors without a parent there whilst still in children’s services with familiar health professionals.

Parents said...

Parents raised concerns about their son/daughter moving on to adult services. Their main worries were about the, ‘unknown’, not knowing who will care for their son/daughter, what the care will be like and how their son/daughter will cope with taking on more responsibility for their own health. Like young people, parents said what would help them was good communication and information about transition and having a clear plan.

“You want to know what to expect, what will be so different compared to what you were used to”.

“I believe that once you’re in adult care, you’re just a number, you know, it’s a totally different care”

“As a Mum it’s absolutely terrifying to have to let go and to trust that X understands her conditions so well that I don’t have to worry…”

The experts and professionals said...

The experts spoke about how, ‘things have become stuck’ and how changes need to be made in order to improve transition. These changes included ‘changing the mind-set’ of professionals through training about adolescence and the needs of young people, more ‘joined-up thinking’ across child and adult services and breaking down barriers hospital have such as a fixed age young people are moved to adult care.

The professionals discussed the barriers to putting in place transition services but also about how some of these had been overcome. Examples of initiatives to improve transition were shared such as: holding transition days for families, joint clinics with the child and adult teams and development of documentation for transition. It was evident that there was little sharing of these strategies as professionals working within the same hospitals were not aware of what colleagues from different specialities had put in place

Benchmarks for transition

Using the information we gathered we worked with young people, parents and professionals to develop the benchmarks for transition. For young people and their parents to experience timely and effective transition eight factors were developed from the data: 1) moving to manage a health condition as an adult, 2) support for gradual transition, 3) co-ordinated child and adult teams, 4) services ‘young people friendly, 5) written documentation, 6) parents, 7) assessment of ‘readiness’ and 8) involvement of the GP.

Under each factor is a list of things that would show good practice in that area. For example, some indicators for Factor 1 are: a) Ensure the young person understands their health condition (including information about their treatment when they were younger and how it may affect them now and in the future) b) The young person is helped to make decisions about the management of their condition and health at a pace appropriate to their needs.

If you would like a copy of the full benchmarks document please contact the research team using the details on the 'contact us' page. 

 

Resources for parents and carers

Below is a selection of links that you may find useful.

Information for parents and carers of young people:

Family lives
http://familylives.org.uk/gotateenager
Information about parenting a teenager. Family Lives (formerly Parentline Plus) is a national charity providing help and support in all aspects of family life. It is available 24 hours a day, seven days a week through its free Parentline.

From child to adult: a guide to disability, transition and family finance (Working Families, 2011)
http://www.workingfamilies.org.uk/admin/uploads/from%20child%20to%20adult.pdf
This booklet has sections for parents and carers and disabled young people, a step-by-step guide to better-off calculations and a list of useful publications, organisations and websites.

Surviving adolescence - a toolkit for parents, teachers, young people and anyone who works with young people (Royal College of Psychiatrists, 2012)
http://www.rcpsych.ac.uk/expertadvice/youthinfo/parentscarers/growingup/adolescence.aspx
This leaflet gives information about adolescence and also gives some ‘top tips’ about parenting young people.

'From the Pond into the Sea'
http://www.cqc.org.uk/content/teenagers-complex-health-needs-lack-support-they-approach-adulthood
A review of transition services by the Care Quality Commission 2014. 

Contact a Family
http://www.cafamily.org.uk/
A UK-wide charity providing advice, information and support to the parents of all disabled children.

The Transition Information Network
http://transitioninfonetwork.org.uk/

The Transition Information Network (TIN) is an alliance of organisations and individuals who come together with one common aim; to improve disabled young people's experience of transition to adulthood.
 

Condition specific advice for parents and carers

Diabetes UK
http://www.diabetes.org.uk/Information-for-parents/Growing-up/Teenagers/
Information for parents of a young person with diabetes.

YoungMinds
http://www.youngminds.org.uk/about/our_campaigns/transitions
YoungMinds is campaigning to improve transitions care from child and adolescent mental health services to adult mental health services. Includes a parent’s guide to transition.

Cystic Fibrosis Trust
https://cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/transition.aspx
Provides information and advice about all aspects of Cystic Fibrosis including a guide for parents about transition.

Inflammatory Bowel Disease Transition to Adult Health Care - Guidance for Parents (National Association for Colitis and Crohn's Disease, 2008)
http://www.ibdtransition.org.uk/
Information for parents of young people with Ulcerative Colitis or Crohn’s Disease about transition from child to adult care.

Children’s Liver Disease Foundation
http://www.childliverdisease.org/content.aspx?CategoryID=419&ArticleID=297
Information on transition with a series of leaflets that can be downloaded from here:
http://www.childliverdisease.org/content/634/Parents-and-Carers
To download them you need to register with the site first.
 

Arthritis Care
www.arthritiscare.org.uk
The Arthritis Care website features a range of publications, factsheets and information for parents, http://www.arthritiscare.org.uk/LivingwithArthritis/Youngpeople/Whenyourchildhasarthritis
Arthritis Care also has a dedicated help-line, see their website for details.
 

Parents
Professionals

Professionals

The Study - Transition: understanding it and making it work

Back to homepage

Background to the study

An increasing number of children with chronic conditions are now surviving into adulthood.  Thus there are an increasing number of children with chronic health needs or complex disabilities who will require ongoing specialised care.  The provision of health care for this group of young people has been the focus of attention for some time. 

In 2010 Sir Ian Kennedy shared his concerns that transition, ‘long the cause of complaint and unhappiness’, was a critical area for service improvement, as existing abrupt transfers were failing to meet the needs of young people.  He called for further funding to enable a shift in focus towards the needs of young people and away from the established ‘bureaucratic barriers’ between child and adult services.  McDonagh (2006) argues that although there are many compelling arguments that something needs to be done about transitional care, many practitioners and policy makers are unsure of what is to be done and/or how to implement such changes.

Our research proposal grew out of a shared interest in improving services for young people and their families. Ensuring a seamless transition is one of the challenges facing many health care providers. 

Aims and purpose of the study

The purpose of this study was to better understand the nature of transitional care in order to develop a clinical practice-benchmarking ‘tool’.

Our aims were to:

1. Explore young people’s and parents’/carers’ views on how best to achieve continuity during transition from child to adult services.

2. Explore the views of health care professionals working with a range of childhood chronic conditions on how best transition can be introduced and sustained.

3. Detail a range of transitional models that best describe approaches to finding solutions to organisational barriers.

4. Describe and inform client focused best practice that will facilitate the transition of young people from child to adult services.

5. Develop and nationally disseminate a clinical practice benchmarking tool to support the structured comparison and sharing of good practice in the transition of young people from child to adult services.

 

Methods

This research involved three phases:

Phase 1 – Data collection

This was a qualitative study. Workshops, focus groups and interviews were held with:

1) Stakeholders from across the United Kingdom, leading on transition for young people from child to adult health care

2) Health professionals working with young people locally in the London area at the four study sites (from both child and adult services)

3) Young people aged 13 to 21 years old with a long-term health condition and their parents. Young people were recruited from the four study sites and through charities via newsletters and social media.

The groups/interviews focused on: experiences of transition, barriers and facilitators to transition. Additionally, the young people and parents were asked to develop a list of their ‘top 10 essential elements of transition’.

A literature review was also planned for this phase; the team were able to join an existing Cochrane review.

Phase 2 - Benchmark development

Two researchers analysed the transcripts and information gathered from these groups and using qualitative content analysis (Morgan, 1993) extracted a list of factors that were mentioned as being important when young people move from child to adult health care, along with some examples of good care/practice in each area. This list of factors was sent out to young people and parents for them to select the factors they thought should be included in the benchmark. They were also asked to add any additional factors that had been missed along with more examples of good care/practice in each area. The benchmarks were refined following the comments from young people and parents and then sent out to the same group of young people and parents again to add in statements of best and poor care/practice for each of the factors. The benchmarks were sent out to all the stakeholders, professionals, young people and parents involved in the study so far for comment and were refined based on the feedback received. This refined document was finally distributed to the professionals, stakeholders and families for final comment.

Phase 3 – Dissemination

The final phase involves sharing our findings through publications, presentations and the study website.

 

Findings

Twenty stakeholders attended the groups, from various professional roles within health care and social care. The stakeholders had expertise in working with young people with many different health conditions and disabilities.  One telephone interview was carried out with a stakeholder who was unable to attend any of the focus group meeting dates. The stakeholders spoke about how, ‘things have become stuck’ and how changes need to be made in order to improve transition. These changes included ‘changing the mind-set’ of professionals through training about adolescence and the needs of young people, more ‘joined up thinking’ across child and adult services and breaking down organisational barriers.

A focus group was held at each of the four study sites which were attended by 36 health professionals (from both child and adult services). The professionals discussed the barriers to implementing transition services but also about how some of these had been overcome. Examples of initiatives to improve transition were shared such as holding transition days for families, joint clinics and development of documentation for transition. It was evident that there was little sharing of these strategies as professionals working within the same Trusts were unaware of what colleagues from different specialities had implemented.

Two workshops were held which were attended by nine young people and nine parents. Two more workshops were planned but had to be cancelled due to poor recruitment and young people being unable to attend (mainly due to being unwell or having other commitments). Interviews were offered to young people and parents who were unable to attend a workshop; four young people and two parents took part in interviews. Young people said, ‘preparation is key’; they wanted early information about transition, help to gradually take over the management of their health condition from their parents and recognition that everyone is different. Young people wanted to be treated ‘like a teenager’ – not a child, not an adult, this involved: having letters addressed to them, professionals speaking directly to them and explaining things in a way they could understand and being listened to. Parents raised concerns about their son/daughter moving on to adult services:

“You want to know what to expect, what will be so different compared to what you were used to”.

“I believe that once you’re in adult care, you’re just a number, you know, it’s a totally different care”

“As a Mum it’s absolutely terrifying to have to let go and to trust that X understands her conditions so well that I don’t have to worry…”

Like young people, parents said what would help them was good communication and information about transition and having a clear plan.

Benchmarks for transition from child to adult health services

The need for change, in order to best meet the needs of young people, and parents during transition is very evident. Through talking to professionals in this study we found some excellent examples of initiatives to improve transition and how barriers to putting these into place have been overcome. These initiatives need to be shared within and between Trusts. The benchmarks for transition indicate young peoples and parents’ needs and preferences regarding transition to adult care. As such they offer an example of a practice guide to support transition and could facilitate the sharing of good practice.

The benchmarks are available online through UCLB's licensing portal. To accomapny the benchmarks is a guide to using them, a benchmarking document and a presentation that can be used to introduce the benchmarks to other team members. Please get in touch if you use the benchmarks as we would appreciate any feedback on their use in practice.

https://xip.uclb.com/i/healthcare_tools/transitionbenchmarks.html

 

 

The following films are presentations from the Transition Study Day we held at London South Bank University in December 2014:

Transition Research Programme: updates from selected work packages

Hannah Merrick (Research Assistant, Newcastle University) and Jennifer Hislop (Research Associate, Newcastle University)

 

Closing the Gap - Reducing the harms associated with transition from children’s to adult services

Julie Want (Improvement Facilitator – Advancing Quality Alliance, AQuA)

 

Evidence to Support Transitional Care - Challenges and Opportunities

Fiona Campbell (Research Fellow, School of Health and Related Research, University of Sheffield)

 

The Survivorship Passport and care plans

Riccardo Haupt (Head Epidemiology and biostatistics, Istituto Giannina Gaslini – Genova, Italy) and Sabine Karner (Project Worker - ICCCPO, Vienna, Austria)

 

Cardiac adolescent and transition care

Linsday-Kay Leaver (Cardiac Adolescent and Transition Clinical Nurse Specialist, Great Ormond Street Hospital for Children NHS Foundation Trust)

 

Young people’s health transitional service

Debbie Kelly (Transitional Nurse Co-ordinator, Hertfordshire Community NHS Trust)

 

Moving from child to adult health care: Benchmarks for Transition

Susie Aldiss (Researcher in Child Health, London South Bank University)

Useful resources on transition and young people’s services for professionals

New NICE guidance on transition published:

In Februray 2016 NICE published new guidance, 'Transition from children's to adult's services for young people using health or social care services. 

https://www.nice.org.uk/guidance/ng43

Publications from the Department of Health:

Transition: Getting it Right for Young People (Department of Health, 2006), Growing up ready for emerging adulthood (Department of Health, 2006) and Transition: moving on well (Department of Health, 2008).
http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Healthcare/Children/Transitionfromchildrenstoadultservices/DH_6587
Publications and a literature review discussing how the handover from young people’s to adult services should be planned and managed.

You're Welcome; Making health services young people friendly (Department of Health, 2011)
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_126813
The ‘You're Welcome’ quality criteria sets out principles to help health services become young people friendly.

Healthy lives, brighter futures – The strategy for children and young people’s health (Department of Health, 2009)
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094400
This joint DH/DCSF strategy presents the Government’s vision for children and young people’s health and wellbeing.

Report of the Children and Young People’s Health Outcomes Forum (Department of Health, 2012)
http://www.dh.gov.uk/health/2012/07/cyp-report/
The Children and Young People’s Health Outcomes Forum has published its proposals on how health-related care for children and young people can be improved.

Making every young person with diabetes matter (Department of Health, 2007)
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_073674
Report of the findings of the working group set up in 2005. The report sets out the current problems, provides guidance and makes recommendations in a number of areas including commissioning, organisation of care, provision of services and workforce.

 
Resources from other organisations:  

Talklab

Talklab's projects include 'Rethinking Transition', 'Better Conversations' and the 'Better Life Experiment'

Using evidence-based models, research, and solutions “prototyped” with young people, carers, and healthcare professionals, talklab have put together a complementary programme of materials, resources, and workshops for healthcare professionals to help them better prepare their young patients for transition. http://www.talklab.org.uk/projects/hee/

TalkLab's 'Better Conversations' programme came out of truly collaborative work involving young people, their clinicians and their carers. It aims to help all these groups get the most out of consultations through the conversations they have with each other. http://talklab.nhs.uk/

The 'Better Life Experiment' is a series of three workshops supported by an app, intended to support young people with long-term conditions as they transition to becoming young adults with long-term conditions. The programme is targeted towards 12 to 16 year olds with long-term conditions who are interested in figuring out how to better manage their own care. The programme is designed to be easily replicated and run by organisations that support young people in transitioning to greater responsibility for their care. http://www.talklab.org.uk/projects/the-better-life-experiment/

'From the Pond into the Sea' 
http://www.cqc.org.uk/content/teenagers-complex-health-needs-lack-support-they-approach-adulthood
Report from the Care Quality Commission 2014 on transition to adult care.

 Lost in Transition: Moving young people between child and adult health services (Royal College of Nursing, 2013)
http://www.rcn.org.uk/__data/assets/pdf_file/0010/157879/003227_WEB.pdf
This publication is aimed at health professionals who work with children and young people and includes information on the principles of good practice in arranging transitions, keyworkers' roles in transition, young people's involvement and processes and protocols.

A transition Guide for all services (Department for Children, Schools and Families, 2007)
http://www.transitioninfonetwork.org.uk/publications/a-transition-guide.aspx
Brings together key information for professionals about the transition process for young people with disabilities.

Getting it right (The Scottish Government, 2007)
http://www.scotland.gov.uk/Topics/People/Young-People/gettingitright
Getting it right is a way of working consistently and supportively with all Scotland's children, young people, and their families and acting quickly if they need help.

Together for Short Lives Transition Taskforce
http://www.togetherforshortlives.org.uk/professionals/projects/transition_taskforce 

The Taskforce is seeking to overcome the barriers to good transition for young people with life-limiting and life-threatening conditions, by building and strengthening bridges between adult and children’s services.


Bridging the Gaps: Health Care for Adolescents (Royal College of Paediatrics and Child Health, 2003)
http://www.rcpch.ac.uk/what-we-do/rcpch-publications/publications-list-title/publications-list-title
This report aims to remedy the past failings within the health care system. One key message is that adolescent medicine is not so much about a particular set of diseases that affect this age group, rather it is about the ways in which services are provided.

The preparing for adulthood programme
http://www.preparingforadulthood.org.uk/
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.

Participation Works
http://www.participationworks.org.uk/home
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.

Adolescent transition care. Guidance for nursing staff (Royal College of Nursing, 2013)
http://www.rcn.org.uk/__data/assets/pdf_file/0011/78617/004510.pdf     
The guide is divided into two parts: the first provides an overview of the issues to consider when planning transition services; while the second provides a practical framework for working with young people at each of the major phases of adolescence: early stage (around 12 to 14 years);middle stage (around 14 to 15); and late stage(around 15 to 16).

Making health services adolescent friendly: developing national quality standards for adolescent friendly health services (World Health Organization, 2012)
http://www.who.int/maternal_child_adolescent/documents/adolescent_friendly_services/en/index.html
This guidebook sets out the public health rationale for making it easier for adolescents to obtain the health services that they need to protect and improve their health and well-being, including sexual and reproductive health services.

Walk the Talk
http://www.walk-the-talk.org.uk/
The main aim of Walk The Talk is to support the development of youth-friendly health services to improve health and reduce health inequalities among young people in Scotland.

The Transition Information Network
http://transitioninfonetwork.org.uk/
The Transition Information Network (TIN) is hosted by the Council for Disabled Children. TIN is an alliance of organisations and individuals who come together with one common aim; to improve disabled young people's experience of transition to adulthood. Includes a resource library -http://transitioninfonetwork.org.uk/resources/transition-guides.aspx

Transition pages on the CHIMAT website
http://www.chimat.org.uk/transitions
The transitions to adulthood hub brings together a range of resources and evidence relating to young people's transition process into the adult world. It is constantly updated with new resources.

‘Ready, steady, go’ transition plan from University Hospital (Southampton NHS Foundation Trust)
http://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx
‘Ready, Steady, Go’ was developed to support young through transition from University Hospital Southampton NHS Foundation Trust.

Transition together website (Walsall Healthcare NHS Trust)
http://www.healthtransition-walsall.nhs.uk/
The aim of this site is to enable young people with impairments to become independent in accessing web based information and guidance to support their transition into the adult world.

Professionals
Welcome

Welcome to the website for the research study ‘Transition: Understanding and it making it work’

London Southbank University
15 August 2016

Benchmarking package now available

Follow our progress and stay in the know.