provision between them and the specialist services commissioned by NHS England. All local hospitals should be linked to a specialist haemoglobinopathy team (SHT). Care should be overseen by the SHT and delivered at linked hospitals. SHTs will generally be linked to hospitals on a geographical basis but arrangements will take into account the prevalence of the conditions and expertise available. The roles and responsibilities for the SHT and their interactions with the linked hospitals should be clearly defined and all patients should be reviewed by the specialist team at diagnosis, for annual review and for major, severe or complex presentations. Clinical management guidelines in local hospitals should be agreed with, and overseen by, the SHT. NHS England is undertaking a service review of specialist haemoglobinopathy services (2017/18) and there may be changes in specialist service provision following completion of this review. It has been suggested that SHTs should work collaboratively to provide a national service providing clinical advice on complex cases and ensuring all patients have access to approved new treatments. Communication between teams is crucial and may include multidisciplinary meetings and/or patient-held shared care records. Clear arrangements should be in place for shared care. Service users should have a named key contact(s) and be clear about whom to contact for emergency and routine advice. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 37 Key participants in care provision are outlined below. Family/carers and social network Friends and family provide essential patient support, including valuable emotional and physical support. They can also act as advocates, particularly when the person with SCD is not well. Voluntary sector The Sickle Cell Society (www.sicklecellsociety.org/) is a national organisation supporting patients with SCD and their families. In some areas they offer home visiting services, support groups and other patient/family support. Local voluntary organisations provide similar services in some areas. Other local voluntary organisations also exist, including several regional OSCARs (Organisations for Sickle Cell Relief & Thalassaemia Support). Education and Employment support Patients with chronic disease and disability may benefit from additional support within the educational system or in the workplace. These may include student disability services and occupational health services. Community care Community support is fundamental to provision of high quality care close to home and all service users should be able to access appropriate community support. Access to dedicated community services will vary between areas. In high prevalence areas there are often Sickle Cell and Thalassaemia (SCaT) community centres run by specialist nurse counsellors offering education, advice and support in the patient home or in the centre. In low prevalence areas, community support may be provided by a community matron or district nursing teams. Psychological support Psychological interventions are very important for some people in managing their condition. Psychology staff may offer cognitive behavioural therapy, annual review, one to one intervention or neuropsychological assessment and management. Psychology staff may be based in community centres, in the local hospital or within the specialist centre. All patients with SCD should have access to specialist psychology services. Primary care The primary care team has an important role in co-ordinating care for service users with SCD and ensuring that they receive general health care screening and advice. The primary care team will have the responsibility for repeat prescriptions, vaccinations and reproductive care (contraceptive and pre-conceptual care), along with general healthcare unrelated to SCD, but is also important in ensuring the well-being of the patient (e.g. hypertension and cancer screening). Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 38 Linked or Local Hospitals Local hospitals provide services typically for a small to moderate number of SCD services users living locally. The majority of hospitals in the UK will be linked hospitals. Their role includes: · Delivery of care, close to a patient’s home, in conjunction with SHT according to an agreed care plan · Having responsibility for care which is delivered locally · Working with SHT and providing input into multidisciplinary team and governance arrangements The responsibilities of linked hospitals should be agreed by the SHT and the linked hospital and will depend on local expertise and facilities. However, all hospitals should be able to provide emergency care for painful episodes and other acute complications. They should also be able to undertake simple transfusions and blood monitoring of patients on hydroxycarbamide and iron chelation drugs. Specialist Haemoglobinopathy Team (SHT) These are multidisciplinary teams including consultants, trainees, specialist nursing staff (acute), community staff and psychologists with expertise in the management of SCD. The roles of the SHTs is being re-defined as part of the NHS England service review but the SHT will need to show compliance against the agreed new service specification. The SHT