of the evidence is low quality and based on expert opinion, but there are some examples of excellent models of transition programmes for patients with SCD across National Health Service (NHS) institutions (Howard et al., 2010; Inusa et al., 2015; Musumadi et al., 2012). In view of the lack of specific evidence about SCD, many of the recommendations in this chapter are based on the generic Department of Health (DoH) and National Institute for Health and Care Excellence (NICE) recommendations (Department of Health, 2003, 2011; Department of Health Partnerships for Children Families and Maternity / CNO Directorate, 2008; National Institute for Health and Care Excellence, 2016b). The transition process should take into account the mental and physical developmental stage of the young person and the prevailing circumstances (personal crises, social context and health care service provision). This seamless process should actively begin several years before transfer from paediatric to adult clinic and include assessment of an individual’s understanding Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 41 of his or her condition, commitment to self-management and the ability of service provision to support the needs of the young person. A jointly created profile or ‘passport’ document can be developed from discussions between the transition team and the young person. This can then be shared with adults' services. It should be produced early enough to form part of discussions with the young person about planning his or her transition and include information about his or her health condition, education and social care needs, his or her preferences about parent and carer involvement, emergency care plans, history of unplanned admissions, his or her strengths, achievements and future aspirations (Musumadi et al., 2012). Ideally, there should be a single practitioner acting as the 'named worker’ to coordinate transition care, working with the young person to complete the transition planning. Having a single transition lead who works with young people throughout transition until early adulthood has proved effective in ensuring consistent care and has improved the development of relationships with the adult team. It is generally agreed that transfer of patients from paediatric to adult services should be completed by 18 years but transfer can occur earlier in those individuals who are ready for transfer (see Figure 1). Figure 1: A suggested model of transition (Musumadi et al., 2012) From: Nursing Standard by Royal College of Nursing (Great Britain). Reproduced with permission of RCN Publishing Co. in the format ‘Other Published Product’ via Copyright Clearance Center. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 42 Provision of specialist transition teams can be associated with improved concordance, in addition to reduced hospitalisation and emergency care utilisation. This team should identify and utilise the broader psychosocial support available to the young person, which might include family/carers, social services, primary care and colleagues in education (Labore et al., 2017; Williams et al., 2015). Service managers in both adults' and children's services -and across health, social care and education - should proactively identify and plan for young people with sickle cell disease in their locality with transition support needs (Treadwell et al., 2016). Some units have teenage and young adult (TYA) units for inpatient care which can be accessed by patients with SCD and are valued highly where they exist. It is essential that the young people are treated as equal partners in the transition process and that their views are taken into account. This will support them in making informed decisions and build their confidence to express their preferences for their own care (Noronha et al., 2016; Sobota et al., 2015). The views of young people should also be integral in service planning and development. The Department of Health quality criteria provides ten generic benchmarks against which all NHS Institutions must measure the quality of their services provision (Department of Health, 2011). These are relevant to SCD and include accessibility, a dedicated transition team, confidentiality and safeguarding, ensuring the environment is young people friendly and staff are appropriately trained. Young people should be involved in monitoring and evaluating patient experience and transition services should include health issues relevant for young people, sexual and reproductive health services and specialist child and adolescent mental health services. It may also be helpful to provide access to peer support during, and in the immediate period after, transition. Transition events or open days where the young people are invited for an introduction to adult service provide a good opportunity for networking and the development of peer support. Recommendations · Adult and paediatric sickle services should work together with their local teenage and young person population to ensure they offer accessible and flexible care appropriate to patient need. · A joint profile or ‘passport’ document can be used to enable the Transition Lead to work with the young person and to assess when they are ready