SCD patients from the most socio-economically deprived areas and with comorbidities are at highest risk of both SCD readmissions and in-hospital mortality, suggesting that there are inequalities in healthcare access and health outcomes amongst people with SCD.

Our data show that SCD admissions are rising in England, particularly in London. Over half of patients admitted with SCD were discharged within 24 h, suggesting that some of these admissions could be prevented through better ambulatory care of patients.

SCD represents a significant cost for commissioners and the NHS. Further work is required to assess how best to manage patients in the community, which could potentially lead to a reduction in hospital admissions and length of stay, and their associated costs.

ObjectivesTo assess sickle cell disease (SCD) patient and carer perspectives on the primary care services related to SCD that they receive from their general practitioner (GP).DesignA focus group discussion was used to elicit the views of patients about the quality of care they receive from their primary health-care providers and what they thought was the role of primary care in SCD management. The focus group discussion was video recorded. The recording was then examined by the project team and recurring themes were identified. A comparison was made with notes made by two scribes also present at the discussion.SettingSickle Cell Society in Brent, UK.ParticipantsTen participants with SCD or caring for someone with SCD from Northwest London, UK.Main outcome measuresPatients' perceptions about the primary care services they received, and a list of key themes and suggestions.ResultsPatients and carers often bypassed GPs for acute problems but felt that GPs had an important role to play around repeat prescriptions and general health care. These service users believed SCD is often ignored and deemed unimportant by GPs.ConclusionParticipants wanted the health service to support primary health-care providers to improve their knowledge and understanding of SCD. Key themes and suggestions from this focus group have been used to help develop an educational intervention for general practice services that will be used to improve SCD management in primary care.

ObjectivesTo determine how patients with sickle cell disease (SCD) perceive the quality of care that they receive from their primary healthcare providers.DesignA questionnaire-based pilot study was used to elicit the views of patients about the quality of care they have been receiving from their primary healthcare providers and what they thought was the role of primary care in SCD management.SettingSickle Cell Society and Sickle Cell and Thalassaemia Centre, in the London Borough of Brent.ParticipantsOne hundred questionnaires were distributed to potential participants with SCD between November 2010 and July 2011 of which 40 participants responded.Main outcome measuresAnalysis of 40 patient questionnaires collected over a nine-month period.ResultsMost patients are generally not satisfied with the quality of care that they are receiving from their primary healthcare providers for SCD. Most do not make use of general practitioner (GP) services for management of their SCD. Collecting prescriptions was the reason most cited for visiting the GP.ConclusionGPs could help improve the day-to-day management of patients with SCD. This could be facilitated by local quality improvement schemes in areas with high disease prevalence. The results of the survey have been used to help develop a GP education intervention and a local enhanced service to support primary healthcare clinicians with SCD's ongoing management.