2nd Edition 45 Peer review Background evidence Aiming to improve services for patients with haemoglobinopathies, the UK Forum on Haemoglobin Disorders, the Sickle Cell Society, the UK Thalassaemia Society and the NHS Sickle Cell and Thalassaemia Screening Programme have worked with the West Midlands Quality Review Service (WMQRS) to produce Quality Standards and set up a peer review programme of haemoglobinopathy services in the UK. The first programme of peer review was of services for Children and Young People with Haemoglobin Disorders. This ran between 2010 and 2011. Nineteen centres were reviewed. A review of Adult Services between 2012 and 2013 looked at 32 teams providing haemoglobinopathy services. This was succeeded by programme of joint reviews of children and adult services which ran between 2014 and 2016 and its findings are presented in more detail below. An overview of all of these programmes of peer review and the report from each participating centre are available at www.wmqrs.nhs.uk/publications. The peer reviews were based on assessment against quality standards, revised before each new programme, and which are consistent with the service specification for haemoglobinopathies. The most recent peer review programme defined standards looking at the following areas: · Information and support for patients and their families · Staffing · Support services · Facilities and equipment · Guidelines and protocols · Service organisation and liaison with other services · Governance · Network · Commissioning Peer reviewer training was provided for health professionals (doctors, nurses and psychologists), managers, commissioners and patient representatives who were to be part of review teams, before each programme began. All specialist centres and non-specialist centres with a large population of haemoglobinopathy patients were offered the opportunity to take part in the programme and although participation in the programmes was voluntary, all invited centres agreed to be visited. Centres in Wales, Scotland and Republic of Ireland, who requested to be visited, were also included in the most recent programme. Prior to the visit, centres were asked to complete a self-assessment against the quality standards and also to provide some background information about their service. During the visit the multidisciplinary review team reviewed the evidence provided by the centre, toured Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 46 the facilities and interviewed staff members and service users before producing a visit report demonstrating compliance with the quality standards. The programme was overseen by a steering group consisting of multidisciplinary health professionals, members of the WMQRS and patient representatives who met regularly. The steering group reviewed all reports and wrote an overview report. This overview discussed several themes which had become apparent during the visits, and made recommendations. The peer review report showed marked geographical variation in SCD provision across the UK. Over 80% of service users attended haemoglobinopathy centres in London, with lower attendance reported in other areas particularly the North-East and South West of England. There were unknown numbers of adults with SCD who were cared for by hospital or community teams that did not link to a Specialist centre. Whilst at most of the centres visited, the reviewers identified key staff members who were providing high quality care, they were often working ‘singlehanded’ and the workload of clinical staff was frequently deemed unreasonably high. This had not improved between successive peer reviews and in several centres there had been problems reappointing into key staff positions following retirement. Doctors in training were often not involved in the routine care of patients with SCD. This exacerbated workforce planning problems. Deficiencies in multidisciplinary care were highlighted and included a lack of psychology support and a shortage of social workers and benefits advisors. Other concerns raised by the peer reviewers included delays in the administration of analgesia for adults presenting with painful sickle cell crisis in emergency departments and the perception that their needs were not being taken into consideration. Many service users requested the provision of routine care, including transfusion and outpatient appointments, outside usual working hours. This, however, was only provided in a minority of centres. National Haemoglobinopathy Registry (NHR) Background evidence The National Haemoglobinopathy Registry (NHR, www.nhr.nhs.uk) was set up in 2009 and is run by an independent group Medical Data Solutions and Services (MDSAS, www.mdsas.com). The NHR aims to improve the quality of data available for patients with haemoglobin disorders in the UK. Initially the registry included numbers of people with SCD, age, geographical location and basic demographic and clinical details. Centres were encouraged to join the NHR and to register their patients using a simple on-line pro forma. The NHR provided a patient information sheet and clinicians were asked to obtain verbal or written consent from patients before entering their details on the registry.