46. Standing Beside People with Learning Disabilities – Why the DAPPLE Project Matters to Me

Over the course of my nursing career, and now in my role as Strategic Adviser for Cancer Care at Macmillan Cancer Support, I have seen the very best and the very worst of how our health and care system supports people with learning disabilities. Those experiences – some heartbreaking, others deeply hopeful – are why my involvement in the DAPPLE research advisory group feels not just important, but personal. 

Why I Joined the DAPPLE Project 

The DAPPLE project (Developing Approaches to Personalised Palliative and End of Life Care for People with Learning Disabilities) is working to understand how we can create equitable, compassionate and personalised care for people with learning disabilities as they approach the end of life. Too often, this is an area where inequalities remain stark. Assumptions are made. Voices are unheard. Needs are overlooked. 

The DAPPLE Project is led by an inclusive research team that brings together academic expertise and the real-life insight of researchers with learning disabilities, demonstrating the power of lived experience in shaping better, more compassionate end-of-life care. 

Being part of the advisory group gives me the chance to help ensure that the research stays grounded in real experiences and leads to practical change.  

Why This Matters to Me as a Nurse 

As a nurse by background, I carry with me memories that have never left me. Early in my career, I witnessed situations that still make my stomach sink: people with learning disabilities whose pain wasn’t recognised or treated appropriately; decisions made about their care based not on clinical need, but on assumptions about their “quality of life”; and families having to fight for care their loved one should have been offered automatically. 

But I have also seen the opposite. Later in my district nursing career, I had the privilege of being part of outstanding care for people with learning disabilities. Care where people were listened to, their choices were respected, their needs were met with creativity, flexibility and compassion, and their lives were valued. 

Macmillan’s Role in Driving Change 

Working at Macmillan allows me to channel that passion into real influence. Macmillan is committed to reducing inequities across cancer care and ensuring everyone can access the support they need – including those with learning disabilities, who often face barriers at every stage of the pathway, and whose identities intersect and overlap with other identities, often resulting in compounding barriers and challenges.  

Recent national evidence reinforces just how urgent this work is. The NHS Race and Health Observatory’s landmark review from 2023: We deserve better: Ethnic Minorities with a Learning Disability and Access to Healthcare - NHS – Race and Health Observatory highlights the deep and persistent inequalities experienced by people with learning disabilities from Black, South Asian and minority ethnic communities. The review found significantly poorer healthcare access, inadequate reasonable adjustments, and much shorter life expectancy for these groups, which demonstrates why projects like DAPPLE and Macmillan’s wider commitment to tackling inequity are so essential. 

My involvement in the DAPPLE advisory group aligns deeply with Macmillan’s mission to make cancer care fair for everyone. 

What I Hope This Research Will Achieve 

I hope the DAPPLE project will help drive a cultural shift - one where people with learning disabilities are recognised as individuals with their own priorities, identities, and values. One where their voices, and the voices of those who love them, are central to conversations about care. And where this results in more equitable care and support.  

Written by Adrienne Betteley, Strategic Advisor for Cancer Care at Macmillan.