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posted 30 Oct 2015, 01:04 by Derryn Lovett
First national survey of people living with sickle cell disease closes for analysis

The first nationwide survey of people living with Sickle Cell Disease (SCD) has now closed for analysis, with initial findings set for publication in early 2016.

Designed by the Picker Institute, the not-for-profit charity which uses people’s experiences to improve the quality of health and social care for all, the development and implementation of the questionnaire was commissioned by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Northwest London (NIHR CLAHRC NWL), in partnership with the Sickle Cell Society.

Focusing directly on patient experience, the survey asked patients about aspects of care that are important to them, including access to care services, information and support for their condition, and their  views on care across inpatient, outpatient and emergency settings. Survey versions suitable for both paediatric and adult patients, and parents/ carers of young SCD patients, were available.

Having received over 600 responses (at least 200 for each version) it is the largest feedback drive of people living with the condition, conducted in the UK to date.

When feedback tools are specifically tailored to the healthcare needs of a particular patient group they can be used to effectively capture and improve their given care experiences, potentially informing the delivery, design and commissioning of services. The qualitative research stage of the project informed development of a community support worker for SCD, position in North West London (an area with a high population of people living with the condition).

Speaking on the success of the survey, John James, Chief Executive of the Sickle Cell Society said; “We have been overwhelmed by the sheer generosity of experience shown by the sickle cell community, and firstly just want to say a massive thank you to them and everyone that has worked so hard to generate responses. In the past we have heard of extremely varied care experiences from people with sickle cell, from truly inspiring exemplary care, to, what can only be described as disturbing. The new survey gives us the ability to measure experiences using a validated tool, and will allow us to obtain a wealth of data on sickle cell care, which will be a real game-changer in terms of the care improvements it could enable.

As well as inspiring grant funding for further research, the SCD survey tool will be made available for individual clinicians in England to collate relevant feedback and make service and care quality changes accordingly. Your feedback is invaluable and will make a real difference, we look forward to updating you on just how it is being used soon.

Final data is currently being analysed by the Picker Institute and the key findings will be shared as soon as they are available.