for transition. · Young people should be offered the opportunity to meet a practitioner from the relevant adult services before they transfer from children's services. · If a young person does not engage with adult services, health and social care practitioners, working within safeguarding protocols, should try to contact the young person and his or her family and involve other relevant professionals, including the GP. · Services should work with young people to support them in planning for leaving home to study or work. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 43 · Services should support and encourage access to peer support networks. Quality improvement Introduction Following the production of the first edition of the Standards for Clinical Care of Adults with Sickle Cell Disease in the UK (Sickle Cell Society, 2008) and similar documents on the care of children with SCD and patients with thalassaemia, the haemoglobinopathy community has worked together to meet these standards. The aim is to reduce levels of morbidity and mortality and improve the experience of all haemoglobinopathy patients by reducing inequities and improving timely access to high quality expert care. Haemoglobinopathies have been designated as a specialist service for commissioning by NHS England leading to the development of a service specification. Other initiatives include a rolling programme of peer reviews against quality standards and a national haemoglobinopathy registry. Suggested medical staffing levels have been given in a review of haemoglobin disorders work force and are summarised in Appendix 2. Similar work on recommended nursing and psychology staffing levels is underway. Standards · NHS England (Specialised Commissioning Teams) should ensure that all adults with SCD have access to care from a Specialist Haemoglobinopathy Team. · NHS England (Specialised Commissioning Teams) should work with Clinical Commissioning Groups in their area to ensure that all adults with SCD have access to community care, local hospital care, social work support and benefits advice. · NHS England should ensure that all patients have equitable access to high cost interventions. · SHT should participate in a quality review programme of haemoglobinopathy services against nationally agreed standards. · All consenting patients should be registered on the National Haemoglobinopathy Registry and annual review data and adverse events should be reported to the National Haemoglobinopathy Registry. · All centres providing acute care for adults with SCD should participate in an audit of acute pain relief, using the NICE recommendations, at least annually. · SHT should submit data as required by NHS England for the quality dashboard. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 44 Specialised commissioning Background evidence Commissioning is a process by which health needs are identified and services bought to meet those needs. Where possible, an evidence-based approach is used in procuring services and in monitoring their delivery. Specialist services are low volume and high cost or are very complex to deliver. Services for children and adults with haemoglobinopathies (sickle cell and thalassaemia) and other inherited anaemias were designated as a specialist service for commissioning by NHS England in April 2014 (NHS Specialised Services, 2010). The service specification B-08 (NHS England, 2013) describes the aims and objectives of the service and pathways of care. This recommends care should be delivered by a specialist haemoglobinopathy team (SHT) which by working with linked providers, is expected to deliver a network of care for all patients in the geographical region. Specialist services are commissioned by Specialised Commissioning Hubs, which are responsible for the Trusts within their geographical region. At the time of this report, network configurations and pathways have not been fully clarified and are the subject of an NHS England service review. This will define the roles and responsibilities of the specialist and linked teams and the commissioning arrangements of the Specialised Commissioning Hubs and the Clinical Commissioning Groups. This must involve consideration of patients’ needs and convenience. Specialised commissioners are supported by Clinical Reference Groups (CRGs) which bring together groups of clinicians, commissioners, public health experts, patients and carers to advise NHS England on the best ways that specialist services should be provided (NHS England, 2016). CRGs lead on the development of clinical commissioning policies, service specifications and quality dashboards. They also provide advice on innovation, conduct horizon scanning, offer advice on service reviews, identify areas of unexplained clinical variation and guide work to reduce variation and deliver value. CRGs, through their Patient and Public Voice (PPV) members, also help ensure that any changes to the commissioning of specialised services are coproduced with and involve patients and the public. Commissioning of haemoglobinopathy services for patients in Wales and Scotland are devolved locally. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK,