Healthcare professionals and patients in a clinical setting

Opportunities for improving the CAR-T patient journey

Anthony Nolan is committed to supporting cell and gene therapy patients directly through our patient services and advocating for improved NHS services. To help improve our collective understanding of patient experiences, unmet needs, and opportunities for improvement, we commissioned the first ever national research study exploring the experiences of CAR-T patients and carers.

A study exploring the experiences of CAR-T patients and carers

With generous grant support from Gilead and Johnson & Johnson Innovative Medicine, we commissioned researchers from the Centre for Patient Reported Outcomes Research (CPROR), at the University of Birmingham, to conduct interviews with CAR-T recipients and their caregivers recruited from four NHS CAR-T treatment centres located in Birmingham, Bristol, Cardiff and Glasgow.

In this report, we:

  • Describe the experiences of CAR-T recipients and caregivers of the treatment pathway in the UK.
  • Focus on specific needs and issues which may require intervention.
  • Provide recommendations for policy. 
Read the full report here
Headshot of patient

I was in hospital for about a month after the treatment and for my follow-up appointments, I was expected to make my own way there – that’s when you start worrying about costs.

Claire Evans, who was diagnosed with acute lymphoblastic leukaemia in June 2015 and received CAR T-cell therapy in 2019.

Areas of intervention identified

The recommendations outlined in this report present a valuable opportunity to enhance the treatment journey for CAR-T patients and their caregivers, ensuring they are more supported, informed, and at the centre of care.

  1. Providing more tailored information, whether specific to younger patients, UK-based contexts, or peer experiences, will empower individuals to make informed decisions and feel more prepared.
  2. Enhancing patient facilities can help make the challenging CAR-T treatment process more manageable, offering comfort through improvements such as safe outdoor spaces, reliable WiFi, exercise equipment, air conditioning, and better-quality food.
  3. Strengthening financial support for patients and caregivers will ease the significant economic pressures that often arise when work must be reduced or stopped entirely.
  4. Expanding access to mental health support, both during and after treatment, is essential to help patients and their families navigate the emotional and psychological challenges that accompany their journey.
Read the full report here
Headshot of a reverend standing in front of a church

Psychological help was non-existent throughout the whole process, it was an afterthought I had to seek myself. There was no signposting or reaching out.

Ross Stirling-Young, who was diagnosed with Non-Hodgkins Lymphoma and received CAR T-cell therapy in 2021.