Sickle cell patients’ experiences of London Ambulance Services – Call for written submissions

Principle is supporting the Sickle Cell Society on a project focused on sickle cell patients’ experiences of London Ambulance Services. Please see more information about the project and making a submission below.

Introduction and overview:

The Sickle Cell Society is collaborating with the London Ambulance Service to undertake a research project to find out more about sickle cell patients’ experiences of using its services, including ambulance care and 999 and 111 calls.

The project follows recent research into the standard of care sickle cell patients receive, including the Sickle Cell Society and All-Party Parliamentary Group on Sickle Cell and Thalassaemia’s No One’s Listening report and the NHS Race and Health Observatory’s Designing Better Acute Painful Sickle Cell Care report.

Following on from these examinations of sickle cell care, London Ambulance Service has commissioned this research to support its efforts to ensure it is delivering high-quality care to sickle cell patients using its services. London Ambulance Service attends approximately 5,700 callouts per year from sickle cell patients in London and, as a service which is often the first point of contact for sickle cell patients, improvements to the service are likely to play a significant role in improving outcomes for sickle cell patients.

Based on the research findings, London Ambulance Service will make changes to ensure the needs of patients are being reflected. This will include the findings informing the design of training for London Ambulance Service staff.

The Sickle Cell Society would like to hear from sickle cell patients, carers and relatives who have experience of accessing London Ambulance Services.

Questions you may wish to address in your submission:

[While the questions below are directed towards patients, we are also interested in hearing from carers and relatives – the questions can be answered based on your own personal experience or based on the experience of someone close to you.]

• Have you used 999, 111 and/or ambulance care in London? If so, what was your experience like? Did you feel respected and cared for?
• How would you describe your interactions with London Ambulance Service staff (including 999 or 111 call-handlers or ambulance staff attending to you in the community)?
• When you have accessed London Ambulance Services during a sickle crisis, did you feel listened to?
• If you have been attended to by an ambulance in London, were you offered a carry chair or other means to reduce the amount you needed to move? Were you offered other supportive measures (aside from medical treatment)?
• When you have used London Ambulance Services while experiencing a sickle crisis, was pain relief offered in line with your needs?
• If you have a sickle cell care plan, was it followed by London Ambulance Service staff?
• Have you ever avoided contacting 999 or 111 despite needing some medical assistance? If so, why was this?
• Do you feel that when you need to call 999/111, you will get the response that you need?
• Have you used London Ambulance Services for other health needs aside from sickle cell? If so, did you feel your sickle cell diagnosis was taken into consideration for your care? 
• What would you like ambulance staff to know about sickle cell disorder when they receive training? What more could London Ambulance Service do to educate its clinicians to support you?
• Have you experienced care in different areas of London? If so, did your experience differ in any areas compared with others?
• How could London Ambulance Service improve your experience during handover between London Ambulance and the Emergency Department?

Submission guidelines:
Written submissions should follow the guidelines below:

• Be submitted as a Microsoft Word document
• State clearly who the submission is from and whether you have sickle cell disorder yourself or are responding as a relative or carer
• Be no more than 2,500 words in length
• Comprise a single document attachment to the email.

There is no requirement to answer every question above and respondents should feel free to choose the questions they can most usefully cover.

All written submissions will be treated confidentially – the Sickle Cell Society will analyse submissions and report findings to London Ambulance Service on an anonymous basis.

Please send written submissions to aidan.rylatt@sicklecellsociety.org by Friday 31 May 2024.