Improving cancer care for people with disabilities and long-term conditions

A recent study has looked at ways to improve cancer care for people with disabilities and long-term conditions. It has highlighted improvements that can be made to ensure adjustments support the needs of these groups.

The study, funded by the Somerset, Wiltshire, Avon and Gloucestershire Cancer Alliance and led by Bristol NHS Group, with support from researchers at ARC West and the University of Bristol, is published in the Journal of Cancer Policy.

The study involved 44 patients and carers in the south-west sharing their experiences during and after treatment for cancer. The patients had a wide range of disabilities and long-term conditions, including physical, cognitive, sensory, and mental health conditions.

Researchers held focus groups where participants described their interactions with cancer services and highlighted the need for appointment flexibility, accessible communication, and an inclusive approach to family and carer needs.

The study found that ‘reasonable adjustments’ for people with disabilities outlined in the Equality Act 2010 lay a strong foundation that can be built on further to meet patients’ actual needs.

Key areas for improvement

Study participants called for:

• Better communication and coordination: Clearer information, longer appointments and better understanding of their needs
• Compassion and empathy: Accessible language, avoiding jargon and ensuring patients feel heard
• Support for family and carers: Clearer explanations and tailored adjustments for caregivers

Beyond legal obligations

While existing training often focuses on meeting the legal requirements for reasonable adjustments, the researchers argue this is not enough.

Instead, they call for an integrated, person-centred approach to care – one that actively involves both patients and their carers in planning and decision-making.

Policy implications

The findings suggest that NHS staff may benefit from broader training to better understand the full spectrum of disability and how to tailor care effectively.

The researchers hope the study will lead to improvements in how cancer care is delivered for people with disabilities and long-term conditions, with an emphasis on listening, learning, and adapting, to ensure truly equitable treatment.

The study was conducted as part of the 2023 National NHS England (NHSE) Cancer Improvement Collaborative (CIC) programme, which invited NHS Trusts to apply for participation.

Hannah Little, Assistant Chief Nursing Officer at North Bristol NHS Trust and study lead, said:

“It was incredibly humbling to be part of this research, and I am grateful to everyone who shared their experiences in our focus groups.

“We are completely committed to ensuring the insights shared are translated into practice, and have already made a start on some of the improvements that were highlighted through the study.

“We’ve looked at staff training resources, co-designed an improved Personalised Care and Support planning process with patient representation, and established a new local survey to ensure that everyone we treat for cancer has the opportunity to tell us about their care and what we can do differently to ensure any access needs are met.

“This is just the start. We know how much of a difference truly personalised care can make to people at some of the most challenging times in their lives, and we are committed to doing everything we can to ensure our services are inclusive for anyone who is living with and beyond cancer.”

Ruth Hendy, Lead Cancer Nurse at University Hospitals Bristol and Weston NHS Foundation Trust, and co-author of the study report, said:

“Taking part in the NHSE CIC programme gave us a valuable opportunity to work collaboratively across the shared cancer pathways within the Bristol NHS Group. Together, we explored ways to enhance the cancer care experience for individuals with cancer who also live with conditions such as neurodiversity, disability, or sensory impairments.

“We are committed to embedding these insights into clinical practice to deliver lasting benefits for people with cancer and their families.”