Keywords

6.1 Introduction

There is now, and has been for some time, a focus on measuring the quality of care received by patients and their family members when receiving hospital care (Raleigh and Foot 2010) in the UK as well as many other countries. Specific to England, the Care Quality Commission (CQC) asks five questions of the services they inspect: Are they safe? Are they effective? Are they caring? Are they responsive to people’s needs? Are they well-led? These ‘key lines of enquiry’ enable inspectors to be consistent, but also adaptable to the range of services being inspected. NHS England and the CQC work together, with NHS Digital having the responsibility for standardising, collecting and publishing data and information (https://digital.nhs.uk/). Comparisons between services in the same hospital, services locally, nationally and internationally are now possible (https://www.oecd-ilibrary.org/oecd/about). Benchmarking theory is built upon performance comparison, and the practices leading to excellent performance (van Lent et al. 2010), where local and national comparisons are enabled through a structured process, and in England there is a benchmarking network (https://www.nhsbenchmarking.nhs.uk/). As a quality measurement ‘tool’ benchmarking (Royal College of Nursing 2017):

  • identifies strengths and weaknesses within organisations;

  • identifies the level of performance possible by looking at the performance of others, and how much improvement can be achieved;

  • promotes changes and delivers improvements in quality, productivity and efficiency;

  • helps to better satisfy the customers’ need for quality, cost, product and service by establishing new standards and goals.

We present in this chapter a set of Benchmarks for Transition to adult care. With reference to ‘the benchmarking wheel’ (Royal College of Nursing 2017) (Fig. 6.1), we will take the reader through the first six steps, and evidence needed and the development of the benchmarks. We will then work through the final six steps, drawing upon examples from practice to show how the Benchmarks for Transition can be used in practice, to score and compare, share best practice and develop associated action plans. We will reflect on training needs and future research, and list some resources we have found useful in our own work.

Fig. 6.1
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The benchmarking wheel. Source: Understanding benchmarking. RCN guidance for nursing staff working with children and young people. Royal College of Nursing. UK. 2017. https://www.rcn.org.uk/professional-development/publications/pub-006333

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6.2 Transition Issue

Over the last 20 years, numerous policy documents have been published in the UK aimed at improving transitional care. Similar policies exist in other countries, for example, in the USA, transition policies have been proposed by professional organisations such as the American Academy of Pediatrics (White and Cooley 2018) and the Society of Pediatric Nurses (Betz 2017). However, in a review of international policies on transition, Hepburn et al. reported that while several jurisdictions indicated an interest in addressing transition issues and had published documents commenting on the need to develop a transition strategy, at that time only the UK and Australia had published documents detailing government-supported transition strategies (Hepburn et al. 2015). Few of the strategies reviewed reported the intention to use powerful policy levers (such as physician remuneration and non-physician investments) to facilitate the uptake of best practice and most jurisdictions had not addressed the policy infrastructure required to support successful transitions.

Consistent across policies is a focus on presenting the core principles of transitional care. All highlight the difficulties faced by health professionals and to some extent offer practical suggestions in terms of a preparation phase in child care, a transfer phase from child to adult services, and an engagement phase in adult services (Gleeson and Turner 2012). However, these policy frameworks have not been sufficient for change (Hepburn et al. 2015): they do not go far enough. What ‘should’ happen with transitional care is well documented, it is the ‘how to’ that is lacking; practical guidance is in the main absent from the literature and policy documents produced to date, thus making implementation a challenge (Gleeson and Turner 2012). In order to bridge this gap in practical advice, we developed a clinical practice benchmark ‘tool’, a ‘tool’ that would combine evidence from research and policy, informing the points of comparison that would be used as the benchmark to facilitate transitional care (Aldiss et al. 2015). We argue that the journey from evidence to effect (Davis et al. 2003) can be facilitated through the use of benchmarks.

6.3 Benchmarking

6.3.1 About Benchmarking

Benchmarking offers a structured form of networking, facilitating the sharing and comparing of best practice (Royal College of Nursing 2017). It enables practitioners to share common difficulties and to offer each other practical support and encouragement, in this case when developing transition services. Benchmarking originated from within industry, where it was used as a quality improvement approach by businesses striving to meet or surpass the best performer in their field. The benchmark model is one way for an organisation to learn about its own practices, discover the practices of others, and make changes that will enable the organisation to reach its goals. The basic principle of benchmarking is that a point for comparison is identified (a benchmark) against which all can compare (Codling 2000). This identified benchmark reflects best practice, traditionally identified from leaders in the field, so that users of benchmarks can see how their performance compares. There was never any intention that benchmarking be only a measurement of one organisation (or part of an organisation) against another, it should also include examining and sharing exemplary practice where it exists (Jones 2001). It is this sharing of best practice that is key, so that organisations continue to learn from each other about what works and does not work to facilitate continuous improvement.

Clinical practice benchmarking focuses on the provision of best possible care for patients and includes not only the desired outcomes but the structures and processes that support achieving those outcomes (Ellis 2006). Developing benchmarks for clinical practice involves drawing on a number of different types of evidence including the following: (a) published research; (b) reports; (c) professional consensus and opinions and (d) experiences and expectations of patients and carers, who could be considered to be the ‘true respected authorities on what constitutes best practice’ (Ellis 2006). At the local level, benchmarking incorporates: (a) regularly comparing indicators (or goals, stating what constitutes best practice); (b) identifying differences in outcomes through inter-organisational visits; (c) seeking out new approaches in order to make improvements that will have the greatest impact on outcomes; (d) monitoring indicators (Ettorchi-Tardy et al. 2012) and (e) supporting the attainment of patient-focused outcomes (Ellis 2006). Benchmarks can also be used at the strategic level, to better describe those areas where policy efforts should be concentrated to improve healthcare system performance, and to help identify ‘gaps’ where more research may be required.

Examples of the use of benchmarking in the UK health service appear in the literature from the mid-to late-1990s (Ellis 2006). Although much of the literature focuses on indicator development, rather than the implementation and evaluation of benchmarking (Wind and van Harten 2017), some examples describing the impact of benchmarking are available from literature focussing on adult healthcare services. Goodman et al. report using the Essence of Care (Department of Health 2010) benchmarks to improve bowel care for older people (Goodman et al. 2013). Their study demonstrated the feasibility of district nurses and care home staff using benchmarks to review and plan ways to improve residents’ bowel care together. There was evidence of some changes to practice such as better documentation, increased availability of drinks, and changes to the menu to introduce more fruit and fibre. Brucker et al. identified improvements in breast cancer care through centres in Germany participating in a 5-year benchmarking project (Brucker et al. 2008). From 2003 to 2007, the most notable improvements seen were for histological confirmation of diagnosis (from 58 to 88%); appropriate endocrine therapy in hormone receptor-positive patients (27–93%); appropriate radiotherapy after breast-conserving therapy (20–79%); and appropriate radiotherapy after mastectomy (8–65%).

A further example of benchmarks contributing to improvements in care of adults is described by Van Lent et al. (2010). This project involved three chemotherapy day units. One unit clearly outperformed the others on the number of patients treated per bed and the number of patients treated per staff member and demonstrated overall more optimal working methods. The sharing of best practice resulted in recommendations for improving patient planning and streamlining the resources needed for a medical procedure (such as number of beds, staff and medication). The lessons learned from the high performing day unit were implemented in the other units. In one unit, this resulted in a 24% growth in the number of patient visits, a 12–14% increase in staff productivity and an 80% reduction of overtime while the average expected treatment duration remained stable. These few examples all demonstrate the potential of using benchmarks for service improvement which can impact on patient experience and care. In child health, however, there are few examples of benchmarks, see, for example, orthopaedic nursing (Royal College of Nursing 2013a), and neuroscience (Waterhouse 2017): but there are no examples of studies describing the impact of using benchmarks.

6.3.2 Development of the Benchmarks for Transition

A brief overview of the development of the Benchmarks for Transition is described here, for further detail on their development see Aldiss et al. (2015). For further discussion of the data collected for this project see Aldiss et al. (2016, 2019). When developing the benchmarks, we decided not to make them condition-specific as the experiences and needs of young people during transition are reported to be broadly similar (Coyne et al. 2017; Heery et al. 2015; Sheehan et al. 2015). However, they have been referred to in relation to their potential use within services for young people with cancer (Gibson 2018).

The Benchmarks for Transition were developed in three stages:

Stage 1: Workshops, focus groups and interviews were held with:

  • 21 experts on transitional care from across the UK, (‘expert’ was defined as having published a paper on transition, been involved in writing UK policy/guidance documents on transition or led on practice initiatives within transitional care)

  • 36 health professionals working with young people with long-term health conditions locally in the London area (from both child and adult services),

  • 13 young people with long-term health conditions (including: cardiac conditions, cystic fibrosis, juvenile arthritis, diabetes, chronic fatigue syndrome, multiple allergies and asthma) and

  • 11 parents.

Two researchers analysed the transcripts and information gathered from these groups and extracted a list of factors that were mentioned as being important when young people move from child to adult healthcare, 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 benchmarks. They were also asked to add any additional factors that have been missed along with more examples of good care/practice in each area.

Stage 2: The benchmarks were refined following 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.

Stage 3: Following addition of the statements of best and poor care/practice, the benchmarks were distributed to all of the stakeholders, professionals, young people and parents involved in the study for comment, and were refined based on the feedback received. This refined document was then distributed to the professionals, stakeholders and families for final comment.

The final benchmarks consist of eight key statements of best practice for transitional care (Table 6.1) and include associated indicators of best practice. The complete benchmarks document is available from www.transitionstudy.co.uk and https://xip.uclb.com/i/healthcare_tools/transitionbenchmarks.html.

Table 6.1 Factors from the Benchmarks for Transition from Child to Adult Health Services
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6.3.3 How to Use the Benchmarks for Transition

The Benchmarks for Transition consist of eight main factors and each of these factors contains a number of indicators of best practice. The factors are core elements of transitional care. Some of the factors may not be relevant for every service, and so it is not necessary to complete or achieve all of them. There may be additional factors that services wish to add in or they may decide to focus on just a few factors. Deciding which factors to focus on may emerge from young people/parents raising issues about aspects of their transition or from health professionals being particularly concerned about that area, given their clinical observations. The factors do not need to be completed in any particular order and are not presented in any order of importance.

6.3.4 Getting Started

Detailed guidance on the use of benchmarks in healthcare settings is available in the ‘How to use Essence of Care’ document (available from www.gov.uk/government/publications/essence-of-care-2010). Essence of care is a UK Department of Health initiative to support quality improvement activity related to aspects of care that are considered vital to the quality of a patient’s experience of healthcare. It arose because of unacceptable variations in standards of care across the UK. The toolkit consists of 12 patient-focused benchmarks on topics such as communication and respect and dignity. The ‘quick start guide’ for using the Benchmarks for Transition has been adapted from the Essence of Care document (Fig. 6.2).Footnote 1

Fig. 6.2
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Quick start guide for using the Benchmarks for Transition. Adapted from “How to use Essence of Care”, Department of Health (2010), UK. https://www.gov.uk/government/publications/essence-of-care-2010

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Following the development of the Benchmarks for Transition, we wanted to ensure they worked in the ‘real world’ of practice. Clinical sites were invited to pilot the benchmarks and provide feedback to the development team. This information was used to develop a guide to using the benchmarks in practice (available from www.transitionstudy.co.uk and https://xip.uclb.com/i/healthcare_tools/transitionbenchmarks.html). The aim of the guide was to give teams who wish to use the benchmarks some practical suggestions and tips on how to use them, based on our own experiences and of those in the pilot sites. An example of a benchmarking document is also available on the same web links which lists the indicators of best practice with space to write in evidence.

6.3.5 Scoring

In the benchmarking document, it is suggested that the benchmarking exercise starts by giving a score for that factor on a scale of 0–10 (0 = poor practice and 10 = best practice). This scoring acts as a rough guide to begin discussions around how team members perceive their service is performing for that factor. Feedback from piloting the benchmarks showed that when individuals completed the scores independently and then shared their responses with their team members, this generated useful discussion about differences in views of how their service was doing. If teams do not find the scoring useful it is not essential to use it. Teams can choose to not use it, or use a different scoring system, if preferred. Early benchmarking systems were varied. One benchmark system scored on a numeric 1–10 scale, then an A–E scale. Some benchmarks are scored using colours, from red, through to green, and to gold. Red indicates that anywhere up to half of the standards have been achieved and gold indicates all have been achieved. Other benchmarks use a statement of best practice. The number of indicators achieved does not equate to a particular score.

6.3.6 Listing Evidence for the Indicators of Best Practice

The indicators (or goals) of best practice all stem from suggestions made by young people, parents or health professionals. Some of the indicators may not be relevant for every service and so it is not necessary to complete or achieve all of them.

From our experience, we suggest that teams work through the indicators for each of the factors and list the evidence that they would look to, in order to demonstrate the achievement of that indicator. Additional information may need to be gathered to ascertain current practice/evidence, such as: reviewing documentation; observing practice; consultation with young people/parents. The types of evidence teams referred to during the pilot of the benchmarks have been grouped into five main categories and are presented in Box 1 with some examples: documented is evidence that could be gathered to inform any of the factors. Table 6.2 applies some of these examples, and adds to it from the responses of professionals participating in the pilot listed for Factor 1 (Moving to manage a health condition as an adult).

Table 6.2 Examples of evidence recorded for Factor 1: Moving to manage a health condition as an adult
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Each factor has space at the end for the addition of local indicators that are relevant for that particular service. We would argue that the identification of local indicators is essential to ensure the ‘tool’ is fit for the population using a particular service.

Box 1 Types of Generic Evidence That Could Be Used Across All Factors

Elements of the service that support transition:

  • Joint multidisciplinary team meetings.

  • Holding an event where young people and their families are given information about transition.

  • Visits to adult clinic/inpatient setting prior to transfer.

  • Adult nurse attends children’s clinic/children’s nurse attends adult clinic.

  • Allocation of named nurse to contact about transition.

Information for young people/families:

  • Leaflets available.

  • Use of display boards/posters.

  • Written information given containing contact details the young person may need.

  • DVD about the adult service given.

  • Advice given in clinic.

  • Signposting to external/hospital/department websites to access information on: their condition/peer support/lifestyle.

Support for young people:

  • Youth forum—encourage young people to join.

  • Information about events for young people with similar conditions provided.

  • Youth support worker on team.

  • Youth support worker leads peer support group.

Use of documentation/tools:

  • Patient-held folders/transition record.

  • Information written in clinic letters.

  • Use of checklists/tools.

  • Child and adult teams use same electronic patient notes.

Training:

  • Staff undertaking courses/training on transition/adolescent care including accessing e-learning courses.

  • Communication skills training.

6.3.7 Next Steps, Planning and Implementation

The benchmarking document can be used to identify achievements, to describe what outcomes have been achieved against each indicator, as well as gaps in current practice, and what might be done to improve practice. The next step is to develop a plan of goals to improve practice; work out what needs to be done and the strengths and facilitators that can be drawn upon to implement successful changes. This will also involve examining what the barriers to change are and how these could be overcome. Plans should be realistic and achievable. Sharing information with other teams and organisations can be useful to learn from each other about strategies to aid progress in achieving particular indicators.

Once the plan has been developed, it is implemented with set dates for review. It is helpful to identify a named lead person to act as a driver to maintain progress. Reassessment of the plan is done using the benchmarking document to see if there is evidence of improvements and highlight new areas for further improvement. An ongoing cycle of reassessment and further goal setting helps to continuously improve practice and care.

It is important to remember that the benchmarks are just one ‘tool’ that can help support the delivery of transitional care. There are other ‘tools’, not dissimilar, that can aid action without the need to start over at the very beginning, that is, ‘re-inventing the wheel’ (see Sect. 6.13 of this chapter). There are also additional indicators to assess whether transitional care has been successful, for example, Suris et al. identified the following eight indictors: (1) patient not lost to follow-up, (2) attending scheduled visits in adult care, (3) patient building a trusting relationship with adult provider, (4) continuing attention for self-management, (5) patient’s first visit in adult care no later than three to 6 months after transfer, (6) number of emergency room (accident and emergency) visits for regular care in the past year, (7) patient and family satisfaction with the transfer of care and (8) maintenance/improvement of the standard for disease control evaluation (Suris and Akre 2015). We would suggest that the benchmarks could be used alongside other resources to facilitate improvements in transitional care (see Sect. 6.13 of this chapter).

6.4 Target Population

The benchmarks were developed for use by services for young people with any long-term physical health condition. This includes services for children, young people and adults. The benchmarks can be used by any professional working within these services, including nurses, doctors, youth workers and allied health professionals. In developing and improving services, it is important that we hear from the users of those services. The benchmarks can be used with service users (young people and parents) to gain feedback from them about their experiences of services to inform change or sustainability. The benchmarks could also be used by services for young people with mental health needs and intellectual and developmental disabilities; although they may need some adaptation locally to ensure they include all relevant indicators of best practices for these particular populations. Although developed for use in the UK, using evidence generated by patients, parents and professionals working in the UK, they have currency beyond these services. Transitional care is an international challenge, see, for example, Tuomainen et al. (2018).

6.5 Ethical Issues

We would agree with Bogossian et al. that little is known about how professionals working in transitional care programmes seek to understand the values of young people and their caregivers (Bogossian et al. 2018). Acknowledgement of their importance to young people and their caregivers will ensure that their needs are integrated, developed and supported, in order to facilitate a smooth transition. The ‘Integrative Framework of Ethics in Transitional Care’ developed by Bogossian et al. (2018), based upon their work with young people with neuro-disabilities, can be applied to all populations: we would recommend using this framework along with the Benchmarks for Transition. In essence, there are some broad key messages to consider at the outset, taken and adapted from Racine et al. (2014), and include:

  • Respect stakeholders and their values and preferences;

  • Recognize knowledge and experiences of youth;

  • Revisit age as a trigger for transfer;

  • Refine communication techniques and develop tools for capturing clinical needs; communication styles and preferences of youth;

  • Identify how general ethics principles are challenged or promoted in transition and by specific approaches to transition;

  • Increase awareness of the principle of respecting autonomy, beyond an ideal of independence;

  • Connect healthcare transition with the broader goals and needs of young adults growing up with a disability or complex need;

  • Consider the balance between individual-centred goals and family- or society-centred goals in transition;

  • Reflect on broadly defined end goals of transition programmes, including the supporting role of primary care providers in bridging gaps;

  • Explore the advocacy role of healthcare providers in the face of suboptimal transition programmes and practices.

6.6 How This Issue Influences a Transition Programme

The issues with current approaches to transition are often described within three categories (Royal College of Nursing 2013b):

  • An abrupt transfer to adult services.

  • Staying in the paediatric area longer than is appropriate.

  • Leaving medical supervision altogether, voluntarily or by default.

The benchmarks aim to improve young people’s and families experiences of transition, to ensure that transition is not a one-off event but is a planned and gradual process of preparation so that these three situations are avoided. Disrupted care, or care that no longer meets young people’s needs, can lead to disengagement from services and may result in deterioration in health (Okumura et al. 2013). We would suggest that using the benchmarks can help to ensure that young people’s needs are met which can impact health outcomes, as they are supported to take gradual steps towards self-management whilst staying engaged with health services.

‘Stepping up to adult services’, a process described by Lucy Watts as ‘traumatic’, where being on an adult ward she felt ‘alone and scared’ (Watts 2018). Lucy was born with a life limiting condition, and as a child she states, ‘I relied on my mother to do all the phoning, liaising, and advocacy that ensured I got the care and support I required’. Lucy suddenly found herself in charge, ‘making important decisions on her own’. The benchmarks emphasize that transition is a gradual process, and not a single event. A coordinated approach is recommended, and in Lucy’s case, this would require links across specialty and organizational boundaries. This would also have allowed Lucy to end what must have been a long-term relationship with the child care team, and be introduced properly to her new adult teams. The benchmarks also emphasize the need to assess readiness for transition, if one of the ‘readiness checklists’ (see http://webarchive.nationalarchives.gov.uk/20170302210617/http://www.chimat.org.uk/transitions/prof/checklist or https://www.togetherforshortlives.org.uk/get-support/supporting-you/family-resources/a-checklist-to-a-good-transition/) had been used with Lucy, she would have understood more about the process and what would happen, and more importantly what impact that ‘change’ would have on her. Any gaps in skills, knowledge or confidence could then have been identified and further support given prior to her transfer of care.

Transition can be a stressful time for parents; they may be reluctant to relinquish their role, due to their own concerns, worries and fear, often related to the fear of long-term complications (Heath et al. 2017). As we see in Lucy’s story, her mother took on a significant role in her care, up to the point of moving to adult services. We might anticipate Lucy’s mother might be feeling just like Lucy, alone and scared, and unable to support Lucy in the same way as she had done previously. The benchmarks include a factor focusing on parents and how they can be supported to gradually transfer responsibility for health to the young person. By including parents in the process, they will be prepared for change, and also be in a better position to help their child be more prepared. Explicitly including parents in the transition process has the potential to improve their experience alongside that of the young person.

There is also the potential to improve staff experience and satisfaction if they are part of a service that is responsive to young people’s and families’ needs. Evidence from the UK Neuroscience Benchmarking Group (Waterhouse 2017), that brings together, in the main nurses, from neuroscience units (child and adult), confirms benchmarking offers an excellent opportunity for research; networking and problem-solving; comparing outcomes and processes and improving the quality of care. Although there is more research available about the actual development of benchmarks as opposed to implementation and evaluation (Wind and van Harten 2017), we remain confident in suggesting that our Benchmarks for Transition could assist in quality improvement. However, the benchmarks alone cannot bring about change, there needs to be commitment from management teams in hospitals to use the benchmarks, and to allocate sufficient resources to complete the process. Having identified transition as the area of practice to examine closely, using the benchmarks, transition programmes will only be implemented and evaluated if the final six steps in the benchmarking wheel are completed, and reported on (Fig. 6.1). Returning to Lucy’s story, what she felt was needed was a transitional care plan, a plan that had been developed by her, and her mother, and coordinated by a consultant, specialist, community nurse or family doctor. The benchmarks highlight the importance of the coordinator’s role, all have a role in helping young people with the shift in responsibility and care, associated with ‘stepping up to adult services’. Support from professionals does not, however, end there, young people like Lucy will need to be supported in adult services by a multi-agency team, only then will a transitional programme have delivered on what should be an expectation.

6.7 Impact on Participants (Outcomes)

The Benchmarks for Transition have not been used in an evaluation study, but of help to readers is a recent systematic review of the outcomes evidenced for structured transitional care (Gabriel et al. 2017). In this review, of 43 studies across populations, 28 revealed positive outcomes, most often related to population health (20 studies), consumer experience (8 studies), and service utilization (9 studies). Only three studies looked at costs, and none found significant savings. Among studies with moderate to strong quality assessment ratings, the most common positive outcomes were adherence to care and utilization of ambulatory care in adult settings (Gabriel et al. 2017): structured transition interventions often resulted in positive outcomes. Like others, we call for more ‘outcome focused’ research, the Benchmarks for Transition are just one ‘tool’ that can help professionals when establishing a transitional programme.

6.8 Application to Practice

6.8.1 Example of Use in Practice

In the UK, Leeds Teaching Hospitals NHS Trust (LTHT) began using the benchmarks in 2015 as part of a 3-year project designed to develop a model of care for Healthcare Transition for Children and Young People that was flexible and adaptable enough to meet the needs of the individual young person and their family in each service. The benchmarks were used alongside other resources such as the National Institute for Health and Care Excellence Guideline (National Institute for Health and Care Excellence 2016a) and Quality Standard (National Institute for Health and Care Excellence 2016b) on transition, You’re Welcome Quality Criteria (Department of Health 2011) and ‘Ready Steady Go’ (http://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx) transition programme to help to identify strengths and gaps in services, monitor change and confirm improvements in services. Teams used the benchmarks to compare with best practices, share examples and develop action plans for change (steps 8–10, Fig. 6.1). Feedback about use of the benchmarks in practice was very positive; the benchmarks:

  • Served as an impartial guide to best practice transition and therefore removed the view of whether the child or adult team was right in their view of how it should be carried out.

  • Allowed teams to look at where they have been, where they are now and where they want to go as a service.

  • Supported a need for discussion on difficult issues with young people (such as sexual health).

  • Encouraged wider discussion about ‘who does what’ within teams, providing the opportunity to align roles and responsibilities for staff to avoid duplication or gaps.

  • Facilitated services that are in their infancy to learn from others through sharing of best practice.

  • Ensured that no areas for discussion are missed and they fit very well alongside the National Institute for Health and Care Excellence Guidance (National Institute for Health and Care Excellence 2016a) and Quality Standard (National Institute for Health and Care Excellence 2016b) and the You’re Welcome Quality Criteria (Department of Health 2011).

  • Helped professionals understand why transition has to be holistic not just a focus on medical condition.

  • Enabled services to support parents better; professionals now understand the aim of transition is not to separate young people from parents, support is required for both of them, just in a different way.

Using the benchmarks has enabled teams to have a positive approach to transition; highlighting where things have gone well to share with other teams. Since the project work and use of the benchmarks, the following changes have occurred in services at LTHT:

  • The cardiac service developed a young person’s waiting area within the children’s clinic. Leaflets are now given to all young people about adolescent health. A gap in nurse specialist support in the children’s service was identified, this position has since been filled.

  • In the adult cardiac service, prior to the benchmarking, young people could be admitted to one of four wards where staff were not trained or comfortable communicating with young people. Patients are now admitted to one ward; staff have been trained to care for young people and patients with learning disabilities. Young people on the adult ward now have access to youth work support and a young person-friendly day room has been created.

  • In the liver service, there was a reduction in clinic non-attendance from 45 to 5% within 2 years, coinciding with the introduction of the young adult clinic and appointment of a youth worker.

  • The renal service set up a young adult clinic and appointed a nurse specialist for transition in the adult service who sees all young people.

  • A young person’s waiting area is being created within the main children’s outpatients department, to avoid young people having to sit with younger children and to allow the use of age appropriate leaflets about drugs, alcohol and sexual health. C-Card service (free condom scheme) is available for outpatients aged 13 and over.

  • The cystic fibrosis service is planning to set up educational support for young people on the adult ward who are still in full time education to ensure continuation of their education and facilitate young people undertaking exams.

6.9 Application to Training

Using formal methods to improve quality in care requires training. Formal face-to-face education, continuing professional development and distance learning are available for professionals to access. We would argue that the Benchmarks for Transition provide a further avenue for training about improving and measuring performance, that is through experiential learning, by using them in a practical improvement project. The Health Foundation has identified four factors that contribute to successful quality improvement training (Health Foundation 2012), these include:

  • Teaching about improvement concepts and tools;

  • The availability of baseline data;

  • Cohesive team characteristics and a sense of ownership in the process;

  • Access to the information and resources needed to carry out an improvement, such as literature, databases and funds.

6.10 Application to Research

There remains a significant roadblock to the adoption of much needed transition interventions. There are examples of good practice, in terms of transition programmes, described in the literature, and evidenced here in this textbook. But as we heard from Watts (2018), young people are still recounting poor experiences. From researchers, we need more studies to examine the following: interventions that teach life skills and self-management; strategies that improve collaboration between services and enhance a shared understanding of approaches to care; different models of transitional care, with diverse populations; and finally, we need to know more from the populations we care for about their experiences of services and care in order to shape services as we move forward. Obtaining anonymous feedback from young people and parents will be critical for refining child-to-adult transition interventions (Gabriel et al. 2017). In terms of transition programmes, we know what young people want and need; we now have a body of work and guidance and ‘tools’ available to implement these programmes, and individualise according to the needs of different populations, but there continues to be ‘roadblocks’ in the way. Roadblocks are multi-faceted, some emerging from the very different nature of child and adult systems of care, and the culture of care, others from funding and governance structures, and others from patients and carers themselves who do not want to leave a familiar service. It is not within the power of researchers to unblock all of these roads, but researchers can be more specific in their evaluations by incorporating detailed descriptions about transition planning, transfer, and integration into adult care, and measure what Gabriel et al. refers to as the triple aims: population health, experience, and costs of care (Gabriel et al. 2017).

6.11 Key Points

  • The Benchmarks for Transition indicate the needs and preferences of young people and parents regarding transition to adult care in the UK.

  • Services can use the Benchmarks for Transition to assess how they are doing, identify gaps and share practice initiatives.

  • The benchmarks can be used alongside other resources/‘tools’ aimed at improving transitional care.

  • Transitional care, which has a transitional care plan at the centre to individualise care, is essential for all children and young people receiving health and social care.

  • More research is needed to expand our understanding of transition interventions and their outcomes.

6.12 Conclusion

It is clear what young people want and need from transitional care services. We now have a body of work, guidance and ‘tools’ available to implement in these services; however, young people still report poor experiences. It has been suggested that one barrier to improving services is the lack of practical guidance available, making it difficult for professionals to know where to start making changes. The benchmarks offer straightforward, practical indicators of best practice for services to measure and to determine how they are doing, identify gaps in their service and provide a platform to share successful practice initiatives. This sharing of best practice is key; service teams need to learn from each other how to overcome common difficulties and offer each other practical support and encouragement, sharing what works and what does not work. Working with clinical sites from both adult and children’s services to pilot the benchmarks has demonstrated their usefulness in facilitating deeper and more holistic discussions within teams about improving transition pathways and sharing good practices. The benchmarks can be used alongside other resources as described previously. However, the benchmarks alone cannot bring about change, there needs to be commitment from management teams in hospitals to use the benchmarks, and to allocate sufficient resources to complete the process. Having identified transition as the area of practice to examine closely, using the benchmarks, transition programmes will only be implemented and evaluated if all the further steps in the benchmarking wheel are completed, and reported on.

6.13 Useful Resources

We suggest that the following resources could be useful to use alongside the Benchmarks for Transition, all of which have international relevance.

  • Ready steady go transition programme (http://www.uhs.nhs.uk/OurServices/Childhealth/TransitiontoadultcareReadySteadyGo/Transitiontoadultcare.aspx). Ready Steady Go is a structured, transition programme for young people with a long-term condition aged over 11 years. It can be used across all subspecialties. A key principle throughout Ready Steady Go is ‘empowering’ the young person to take control of their lives and equipping them with the necessary skills and knowledge to manage their own healthcare confidently and successfully in both child and adult services. This is initiated through the completion of a series of checklists.

  • The Department of Health ‘Quality criteria for young people friendly health services’, which is referred to as ‘You’re Welcome’ (https://www.gov.uk/government/publications/quality-criteria-for-young-people-friendly-health-services). This document sets out principles to help commissioners and service providers to improve the suitability of health services for young people.

  • Developmentally Appropriate Healthcare Toolkit (https://www.northumbria.nhs.uk/quality-and-safety/clinical-trials/for-healthcare-professionals/). This toolkit gives practical suggestions about how healthcare can be tailored to young people’s needs as they develop and change through adolescence into young adulthood.

  • Transition information for young people with a long-term illness (www.steppingup.ie). This web site provides information, resources, and videos of transition stories; to assist in thinking about transition, then planning and making a transition to a new health service.

  • ‘Got Transition’ website (https://www.gottransition.org/index.cfm). This website provides information for professionals, young people, families, researchers and policy makers about transition. It includes a five-part webinar series featuring examples of best practice, tools and resources, and problem-solving strategies.