Feedback tool to help improve services for Sickle Cell Disorder patients

Picker Institute Europe leads development of new questionnaire that will drive improvements to services regardless of geographical location

A new feedback tool has been launched that enables healthcare services to obtain feedback from Sickle Cell Disorder (SCD) patients.

Picker Institute Europe led the development of the online questionnaire, which was commissioned by researchers from the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Northwest London, based at Imperial College London; and Chelsea & Westminster Hospital, in partnership with the Sickle Cell Society.

Intended specifically to monitor the integrated care programme for improving management of SCD services; the tool has been created to provide equal care regardless of patients’ geographical location. The questionnaire was developed and tested in London and is now being conducted nationally across England to gain feedback on sickle cell care, with versions suitable for both paediatric and adult patients, and parents and carers of young SCD patients.

Findings from the qualitative research stage of the project have already informed the development of a community support worker for SCD in north west London - an area with a high population of people living with SCD - and led to a successful NIHR research grant to study SCD transition from paediatrics to adult services.

Good-quality patient feedback can really help clinicians to understand the impact of the care they give

Focusing directly on patient experience, the survey asks about patients’ views on a number of care considerations across inpatient, outpatient and emergency care settings. Question areas include access to healthcare services, experience of seeing clinicians, information, support, and management of the condition.

John Warner, professor of paediatrics and an honorary consultant paediatrician at Imperial College Healthcare NHS Trust London, said: “One of the key issues with SCD versus other long-term conditions is that outwardly you look well, but if you have a crisis you are literally in agony. Unless you scream and shout, people just would not know.

“Patients need to know that there is that understanding, that if they are in pain, even if they don’t look ill, they can get the care they need quickly and effectively, not just at a specialist centre, but in their own communities.”

Discussing the tool’s development, John James, chief executive of the Sickle Cell Society, added: “Sickle Cell Disorder is unpredictable, agonising and, without a cure, so a life-long battle that has a massive impact on an individual’s quality of life. We are, therefore, pleased to support the Picker Institute’s quality research.

“Good-quality patient feedback can really help clinicians to understand the impact of the care they give. Don’t get me wrong, some patients do get good, even exceptional, care, but more get the reverse and that needs to change.”

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