will: · Be based at a specialist haemoglobinopathy centre (SHC) and will work with named and linked hospital teams (LHT). The SHT may work across several sites, e.g. through outreach clinics or shared posts, in order to ensure they achieve the required standards and oversight of care for each patient whether they attend for his or her care at the SHT or the LHT · Need to have expertise in the care of people with SCD. For areas of low prevalence the SHT may form partnerships to ensure sufficient patient numbers to develop expertise · Develop and review each individuals care plan. This should start at birth and be updated as required and at annual review · Be responsible for governance e.g. audit, mortality reviews, guidelines and protocols · Provide clinical advice for its linked centres either alone or in collaboration with other SHTs with an agreed rota for cover · Have access to range of co-dependent services which should include the provision of multi-specialist clinics · Offer a specialised acute and chronic pain service for sickle cell · Provide patient information and education Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 39 · Provide education and training for staff · Work with local hospitals to ensure care close to home as possible by offering outreach clinics or by employing new technologies · Ensure there are mechanisms for ensuring patient participation in service development and quality reviews · Ensure adequate and comprehensive data sharing flows between LHT and SHT and data entry to the National Haemoglobinopathy Registry Networks There is wide geographical variation in the prevalence of SCD across the UK. In order to provide uniform standards of care to all service users, care networks for haemoglobin disorders (SCD and thalassaemia) are recommended so that every patient in the UK can have equitable care, irrespective of where they live, close to home, but with access to a specialist team for management of more severe and complex complications. The effectiveness of such service arrangements have already been demonstrated for other chronic conditions such as cystic fibrosis, asthma, diabetes and haemophilia, although these conditions all have a more consistent distribution around the country. The model of a network may vary according to prevalence of SCD in the local population, expertise of health professionals and proximity to other services. In high prevalence areas several large hospital centres may work together to provide specialist services across the network. In low prevalence areas a ‘hub and spoke’ clinical care model with a SCD specialist clinical centre supervising and sharing care with local hospital units and primary and community care teams across a wide area may prove more effective. In very low prevalence areas, it may prove difficult to develop sufficient expertise to provide a specialist service and these networks should link with a larger specialist centre in another network to support them in the management of complex cases and for the development of guidelines, training and audit. This will be defined further in the revised service specification following the service review taking place in 2017/18. Recommendations · Service users should be offered information about local patient support groups and voluntary organisations. · Good communication between community, local and specialist teams is essential and should involve multidisciplinary team meetings. This should include clear instructions for the GP and a care plan. Patient held records may also be helpful. · Adults with SCD should have access to multi-specialist clinics for management of chronic disease complications. · The specialist haemoglobinopathy team should have adequate clinical and administrative resources to support all SCD patients in their network. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 40 · The specialist haemoglobinopathy team should supervise a programme for education and training, research and audit and data collection within their network. · Out of hours facilities for blood tests, outpatient clinics and day facilities should be made available where appropriate for the local population. Transition services “As a parent and carer, I know the transition process from child to adult is not effective and nonexistent in some areas. We need to crack this issue better.” Introduction Transition is the process of moving from children's to adults' services. It includes initial planning and offering ongoing support during and after a young person makes this move. The purpose is to help young people and their carers have a positive experience, and to encourage them to adhere to treatment at this time when they can readily default. The process should take into account the broad developmental changes associated with the teenage years and not focus solely on meeting clinical needs. It is important that young people are involved in service design, delivery, and evaluation, and that their experiences are valued. Standard · Specialist teams should have a policy and dedicated team for transition, which should include a named transition-lead. Background evidence There is a lack of research evaluating the efficacy of transition programmes for young people with haemoglobin disorders in the UK. Most