Patient Experience: Sickle Cell disease Patrick Ojeer

Sickle Cell Survey What has this got to do with Sickle Cell? Not enough is known about healthcare experiences of people living with Sickle Cell in the UK. We cannot bring about change, if we do not understand the issues CLAHRC for Northwest London, Picker Institute Europe & the Sickle Cell Society have therefore developed THREE surveys to collect feedback How were the surveys developed? talking to people like you, who live with sickle cell to identify areas that matter to you most collaboration with healthcare professionals who treat sickle cell, committed to doing all they can to understand your experiences Picker Institute Europe

We need your help! Who can take part? VOLUNTARY CONFIDENTIAL The surveys are currently being tested: we now need to get enough responses to make sure the survey works properly. This is important because information from the surveys can then be used to make improvements to your care. Completing the survey is: VOLUNTARY CONFIDENTIAL Who can take part? Children in the UK with sickle cell, aged 8-15 yrs Adults in the UK with sickle cell, aged 16 yrs+ Parents/carers of children in the UK with sickle cell, aged 0-15 yrs Picker Institute Europe

When can I take part? You can fill out the survey anytime between now and September PLEASE HELP US SPREAD THE WORD! Picker Institute Europe

How do I take part? A leaflet containing useful information about the survey is available today or please feel free to come and ask me questions. Go to: www.pickereurope.org/sicklecell OR Request a paper copy of the questionnaire Email: scdsurvey@pickereurope.ac.uk WIFI code- Username: AGM181 Password: agm181 Picker Institute Europe