Beyond the Crisis

Why Beyond the Crisis Exists

Research and patient experience continue to expose challenges in sickle cell care, including delays in pain relief, inconsistent adherence to national standards, limited awareness of the condition and reports of negative attitudes towards patients, as highlighted in the APPG inquiry No One's Listening (2021).

While improving healthcare systems takes time, individual healthcare professionals can make a meaningful difference today. Listening, communicating clearly, involving patients in decisions and providing timely, compassionate care can all have a lasting impact.

Our mission at Beyond the Crisis is to bridge the gap between clinical guidance and lived experience by providing practical, evidence-based resources that support more compassionate, informed and patient-centred sickle cell care.

Go To The Healthcare Resource Hub Read the APPG Inquiry: No One's Listening (2021)

What Can I Do to Improve a Patient's Experience Today?

You don't need to be a sickle cell specialist to make a meaningful difference.

Every interaction has the potential to shape a person's experience of living with sickle cell. Whether it's recognising the urgency of a pain crisis, challenging misconceptions or simply listening to the person in front of you, small actions can have a lasting impact.

Our Areas of Focus

  • Understanding Sickle Cell

    Improving awareness of how sickle cell affects people physically, emotionally and socially.

  • Crisis Care

    Supporting greater understanding of the urgency of pain crises and the importance of timely, person-centred care.

  • Communication

    Encouraging compassionate communication that builds trust, reduces anxiety and helps patients feel heard.

  • Lived Experience

    Sharing the perspectives of people living with sickle cell to help inform education, improve services and strengthen patient-centred care.

  • Reducing Bias & Stigma

    Helping healthcare professionals recognise and challenge misconceptions that may affect the experiences of people living with sickle cell.

  • Continuous Learning

    Providing accessible education and practical resources that support ongoing professional development in sickle cell care.

1 6

How We Hope to Support Healthcare Providers

As the programme develops, we hope to work collaboratively with healthcare organisations by providing:

  • Educational resources
  • Patient insight reports
  • Lived experience presentations
  • Workshops and training sessions
  • Service improvement discussions
  • Practical resources to support compassionate care

Our aim is to complement existing clinical education, not replace it.

A split-panel scene showing a group therapy or counseling session with four people seated in a circle, plus a close-up of a notebook and a red card with supportive quotes on a desk. The wall behind them reads, 'Real stories.

Why Patient Voices Matter

The people receiving care often have valuable insights into what works well and where improvements could be made.

By listening to lived experiences, healthcare organisations can better understand the barriers patients face and identify practical opportunities to improve care.

Beyond the Crisis works closely with Voices in Crisis, using community insight to help inform future education and service improvement initiatives.

Four healthcare professionals in a meeting room, with two men and two women in navy and red scrubs, gathered around a table with documents and a laptop. A whiteboard in the background reads 'Better Care.

Working Together

Improving sickle cell care is a shared responsibility.

We believe the greatest improvements happen when patients, families, healthcare professionals and organisations work together with mutual respect and a shared commitment to learning.

Our goal is to support conversations that lead to practical, meaningful and lasting improvements in care.

Future Initiatives

As Beyond the Crisis grows, we hope to develop:

  • Educational workshops
  • Healthcare resource packs
  • Patient insight reports
  • Hospital partnerships
  • Service improvement collaborations
  • Digital learning resources

Interested in Working With Us?

We're always interested in connecting with:

  • NHS Trusts
  • Haematology teams
  • Emergency Departments
  • Clinical Nurse Specialists
  • Universities
  • Integrated Care Boards (ICBs)
  • Professional organisations
  • Researchers
  • Community organisations

If you'd like to explore opportunities to work together, we'd love to hear from you.

Partner with Us