NHS Wales wanted to provide a comprehensive national young adult service for people with diabetes, covering the time between leaving paediatric services and the age of 25. The Standards were created as a best practice reference for Welsh health boards to follow to develop services that met the holistic needs of this group. All recommendations were based on good practice observed in Wales and beyond, with learning taken from specialist health care professionals across paediatric and adult services and co-produced with people living with diabetes and their families.
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The Standards were published by the first Diabetes Transitional Care National Co-ordinator, who was appointed in June 2016 to lead the project. The services needed to be engaging, encouraging young adults to attend to help them manage their diabetes, understand where to get help and achieve better targets. Different methods were used to get feedback from the target group, including: face-to-face contact around clinic appointments across different health boards; holding #Type1Meetups across Wales; surveys; social media; diabetes teams asking children, young people and families for feedback; telephone calls; Email; special appointments organised with young people who were at risk of disengaging; a young adult feedback panel and coffee (the best ideas came from cups of coffee with young people and no set agenda). Taking into account the views of service users and staff meant the Standards covered topics that ranged from education to psychology input, mental health to eating disorders, insulin omission to receiving healthcare when pregnant, being inclusive to the LGBT+ population to being cared for in prison, as well as changes that would benefit service improvement, planning and structure and advice for parents and carers.
Research and scoping of current practice across Wales showed variation in care. Challenges included services that lacked dedicated clinics for this age group, transfers by letter, and teams struggling to achieve staff engagement for joint clinics. In contrast, best practice featured a two-year process, subtle changes in paediatric to adult-led consultation, with continuity in nursing staff, dietetic input, a psychologist and good outcomes. Staff gave their views on current services and barriers, with solutions to common problems included in the recommendations. Examples include service restructure, guidance to increase engagement, improved waiting room environments and the care process structure, age-appropriate information and education on diabetes and life topics, and better methods of communication, including the use of language. A National Transition Working Group was established to use the local expertise of the group to inform what was needed at national level to implement change. The artwork was a result of contributions from service users.
The All Wales Diabetes Implementation Group (AWDIG) included implementation of the Standards in its Integrated Medium-Term Plan for 2018/19, making it a top-three priority that all health boards in Wales are expected to use. Having a dedicated Transitional Care Co-ordinator ensures support on applying the Standards is available remotely via telephone, email or in person. The Standards have created change in care for young adults in Wales, in an area that historically has had problems, with young adults reporting feeling lost, and staff reporting great difficulties. Since publication, transitional care is now itemised on diabetes planning and delivery group agendas; service managers are invited to see what they can do to improve services; paediatrics and adult services work closer together; centres have allocated specific staff who meet regularly to discuss cases and service improvement; staff attitudes towards young adults have improved; clinic waiting rooms have been renovated and made more appropriate; there has been increased service user involvement in service development, plus there has been joint working between diabetes and eating disorder teams. The recommendations in the Standards are starting to be implemented by health boards, resulting in visible and significant improvements in services, with positive feedback from service users and their families. At a local level, examples include: improving clinic structure, engagement and attendance; running joint clinics and young adult clinics; holding regular joint team meetings; joint service improvement projects and collaborative working between paediatrics and adults; improving waiting rooms; creating a more welcoming atmosphere; changing methods of communication so they are more appropriate to young adults; more use of positive language in diabetes care; diabetes youth workers are employed in three health boards, plus use of the Standards in business cases that secured a principal clinical psychologist to work in the young adult service. In January 2019 the Transitional Care Co-ordinator and staff from Cwm Taf Health Board were invited to present their service improvements at the NPDA conference in Leeds. Service users reported feeling more prepared before transferring their care, parents felt less anxious and more involved in understanding the changes ahead, the standard of education was better and staff were more concerned about them and their quality of life than before.
Sustainability and Spread
Funding for the Transitional Care Co-ordinator post has been extended annually since 2016, with a two-year period awarded from March 2019 until March 2020. All health boards will be reviewed against the Standards during this time, which demonstrates the commitment from the AWDIG in wanting the recommendations adopted Wales-wide. Presentations about transitional care outside of diabetes are being made to other networks struggling in this area. The Standards have been shared as examples of good practice on slides at the Diabetes Professional Conference 2019, the NPDA in Leeds, as part of Diabetes UK QI Projects and as part of Diabetes UK Cymru’s #ItsMissing campaign.
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