Voices in Crisis

Capturing and amplifying the lived experiences of people affected by sickle cell to inform research, strengthen advocacy and drive meaningful change.

Every experience has the power to improve care.

Healthcare data can tell us what is happening.

Lived experience helps us understand why.

Voices in Crisis exists to capture, understand and amplify the experiences of people affected by sickle cell. By listening to patients, families and carers, we can identify common challenges, highlight what is working well, and build evidence to support meaningful improvements in care.

Every survey completed, every story shared and every insight gathered helps strengthen the case for change.

Go to Surveys and Research

Current Projects

Improving Sickle Cell Crisis Care in the UK

We're currently gathering experiences of people living with sickle cell, along with the perspectives of parents, carers, family members and friends, to better understand what crisis care looks like across the UK.

The survey explores:

  • Access to pain relief.
  • Experiences in A&E.
  • Staff knowledge and communication.
  • Personalised pain plans.
  • Priorities for improving care.

Estimated completion time: 5 minutes

Who can take part?

  • People living with sickle cell
  • Parents and carers
  • Family members
  • Friends supporting someone with sickle cell

Please note: This survey is currently for UK residents only.

Take the survey

  • How We Use Your Feedback

    Every response contributes to a better understanding of the challenges faced by the sickle cell community.

    Survey findings may be used to:

    • Produce community insight reports.
    • Inform future resources and programmes.
    • Support advocacy and awareness.
    • Guide discussions with healthcare organisations.
    • Identify priorities for future projects.


    Where appropriate, findings may also support research collaborations and service improvement initiatives.

  • Privacy & Confidentiality

    Protecting your privacy is important to us.

    Responses are treated confidentially and analysed anonymously wherever possible.

    Any reports, presentations or published findings will use aggregated data and will not identify individuals without their explicit permission.

    You can read our full Privacy Policy [here].**

  • Reports & Findings

    As Voices in Crisis grows, this section will become home to our published reports and community insights.

    Coming Soon

    📄 Improving Sickle Cell Crisis Care in the UK – 2026 Community Report

    📄 Pain Plan Access Report

    📄 Annual Community Insights Report

    Our reports will summarise what we've learned, identify recurring themes and highlight opportunities to improve care.

  • Get Involved

    There are many ways to support Voices in Crisis.

    You can:

    • Complete a survey.
    • Share your experiences.
    • Help us shape future projects.
    • Join community discussions.
    • Review reports and findings.
    • Share our work with others.


    Together, we can ensure that lived experience continues to inform the future of sickle cell care.

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Keep the Conversation Going

Have an idea for a future survey, research project or resource? We'd love to hear from you.

To better understand the experiences of people affected by sickle cell and identify opportunities to improve care, support and resources.

No. Personal information will never be shared publicly without your explicit permission. Findings are presented anonymously and in aggregate wherever possible.

Absolutely. Voices in Crisis is community-led, and we're always keen to hear what matters most to the people we serve.

Get in touch

As needed. Some surveys will explore broad themes, while others may focus on specific topics such as pain plans, employment, mental wellbeing or access to services.