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In 2023, Patient-Reported Experience Measures (PREMs) were gathered from over 400 patients with sickle cell disorder and carers of people with sickle cell disorder.

Living with and caring for sickle cell: survey results 2023

Adult survey

• 74% of doctors and nurses in the clinic knew enough about sickle cell
• 87% of doctors and nurses communicated in a way you could understand
• Only 37% of doctors and nurses in A&E knew enough about sickle cell disease (SCD)
• Only 36% felt that emergency staff helped ease pain
• 49% were not offered psychological support

Parent survey

• 77% of doctors and nurses in the clinic knew enough about sickle cell
• 92% of doctors and nurses communicated in a way you could understand
• 70% of doctors and nurses in A&E knew enough about SCD
• 59% felt that emergency staff helped ease pain
• 59% did not see a psychologist or counsellor
• 78% had enough information about coping with pain

Child survey

• 79% of doctors and nurses knew enough about sickle cell
• 76% felt friends did not know enough about sickle cell
• 42% did not have the chance to meet others with sickle cell
• 93% felt they were given sufficient help to cope with SCD

What you said – Living with and caring for sickle cell: Survey Results 2023

Things that need to improve

1. 1Improved care in A&E, including better training and empathy from staff
2. 2More information about the disease and treatment options, including alternative medicine
3. 3More opportunities to connect with others in similar situations
4. 4More efficient appointment scheduling
5. 5Greater advocacy for SCD patients, including access to financial assistance and social services

Things that are going well

1. 1Specialist nurses and doctors actively listening, understanding, and empathising with patients’ perspectives and concerns
2. 2Ease of access to care in specialised hospitals, including referrals, emergency treatment and consultations

What next?

1. 1We will ensure your suggestions for improvement are heard
2. 2We will work with our emergency teams to ensure timely access to pain management
3. 3We have designed mandatory training modules for A&E staff looking after sickle cell patients

This survey was conducted in 2023 at the following South East London Specialist Sickle Cell Hospitals:

• King’s College Hospital
• Guy’s and St Thomas’s Hospital
• Croydon University Hospital
• Lewisham Hospital
• Queen Elizabeth Hospital, Woolwich