Why Belonging Matters In Hospice Care: My Journey From Patient To Purpose
I didn’t come to hospice work because of a job advert or a carefully mapped career plan.
I came here because life intervened and then quietly pointed me in a new direction.
I retired in 2020 after several decades working across mental health and EDI. My career had been centred on people particularly those who found systems hard to navigate or who felt unseen within them. Retirement felt well‑earned and well‑timed. I slowed down, reflected, and began enjoying life at a gentler pace.
Then, in December 2023, a letter arrived inviting me for a routine lung health check.
I almost ignored it.
I felt fine. I had stopped smoking years earlier. Like many people, I assumed serious illness would come with obvious warning signs and that if I felt well, I must be well.
That scan changed everything.
Seeing Healthcare From the Other Side
Within weeks, I went from being someone who supported others through complex systems to lying in a hospital bed myself, facing a lung cancer diagnosis and major surgery. I would go on to have two operations and a long period of recovery.
Cancer has a way of stripping things back. Sitting in waiting rooms, navigating appointments, and listening to conversations around me, I began noticing patterns I had recognised professionally for years but had never felt so personally.
I saw people struggling to understand medical language. I saw fear shaped by culture, where cancer was still spoken about in whispers or viewed as a death sentence rather than something that can sometimes be treated or managed if caught early. I saw how easily people can feel overwhelmed, isolated, or reluctant to ask questions.
Despite my background in mental health and EDI, I still felt vulnerable at times. And I kept thinking: if I feel this way, what must it be like for someone facing language barriers, cultural mistrust, or previous experiences of exclusion?
That question stayed with me.
Finding Purpose Again
A few months after my operations, as my strength began to return, I found work as a Social Prescriber. I hadn’t planned it, but it turned out to be exactly what I needed at that moment.
I loved the immediacy of the role. Being able to offer help and support to patients almost straight away whether that meant practical advice, emotional support, or connecting someone to services felt grounding and purposeful. It reminded me why I had spent my working life alongside people at the edges of systems, and how powerful timely, human support can be.
But something else was quietly forming.
The Moment That Changed Everything
I was invited to attend an interfaith conference at Wakefield Hospice. I went with interest and left profoundly changed.
There was something about that day I still struggle to fully put into words. The openness. The humanity. The way faith, culture, compassion and care were held together so naturally. It didn’t feel clinical or distant. It felt deeply human.
For the first time, I didn’t just understand hospice care…I felt it.
I remember thinking: ‘this is where I want to be.’ Not just as a visitor or an advocate, but as part of it.
Becoming a Bridge Between Worlds
Looking back, I realise much of my working life has involved standing between worlds.
- Between communities and systems.
- Between policy and people.
- Between fear and understanding.
My work in mental health taught me how deeply stigma shapes behaviour. My EDI work showed me how systems, even well‑intentioned ones, can unintentionally exclude. My cancer diagnosis showed me how fragile confidence becomes when you are unwell, frightened, and unsure what comes next.
What hospice care does at its very best is meet people exactly where they are. Not just physically, but emotionally, culturally and spiritually. That is why the interfaith conference stayed with me. It wasn’t about difference. It was about recognition.
I saw a space where care didn’t ask people to leave parts of themselves at the door.
From Intention to Action
Not long after that conference, a role came up at Rotherham Hospice.
I applied.
And the rest, as they say, is history.
Joining the hospice felt less like starting a new job and more like arriving somewhere I had been quietly heading towards for years. My earlier work in mental health, equality and inclusion, my experience as a patient, and my time as a social prescriber suddenly made sense as part of one story.
Why Belonging Matters at the End of Life
When we talk about hospice care, we rightly talk about compassion, dignity and comfort. But what my own experience taught me is that dignity isn’t just about symptom control or clinical excellence.
It’s about belonging.
Belonging is feeling safe enough to ask questions.
Belonging is knowing your faith, culture and identity will be respected.
Belonging is not feeling you have to explain or defend who you are especially at the end of life.
Yet many people still don’t see hospices as places for them. Some associate them only with death. Others worry their beliefs won’t be understood. Some simply don’t know what support exists.
That gap between what hospices offer and who feels able to access them is where my work now sits.
Inclusion Is Personal, Not Theoretical
Equality, diversity and inclusion in hospice care are not abstract for me. They are deeply personal.
I’ve spent time in mosques, gurdwaras, community centres and living rooms, listening to people speak honestly about their fears of hospices, their experiences of healthcare, and the reasons they delay seeking help.
What I’ve learned is this: inclusion isn’t about asking communities to adapt to us. It’s about being willing to adapt ourselves and recognising that trust is not automatic.
Trust is built through relationships, consistency, humility and time. Once trust exists, conversations about cancer, dying and hospice care become possible in ways leaflets and campaigns alone never achieve.
Faith and culture often come into sharper focus during illness. Questions about prayer, family roles, modesty, food, decision‑making and meaning don’t disappear at the end of life they become more important. Hospices that make space for these conversations don’t dilute care; they deepen it.
Who Works in Hospices Matters Too
Inclusion doesn’t stop with patients and families. It also shapes who works in hospices and who feels able to stay.
Hospices are full of extraordinary people, but representation still matters. Not because one person can speak for everyone, but because diversity brings perspective, challenge and trust.
People stay where they feel valued, listened to and psychologically safe. Equality and inclusion are not “extra” to workforce wellbeing they are central to it.
A Personal Closing Reflection
That lung health check saved my life.
That interfaith conference changed its direction.
Working in a hospice now feels less like a career move and more like a continuation of my earlier work, of my experience as a patient, and of a long‑held belief that care should never require people to shrink themselves to fit a system.
Hospices exist to offer comfort, dignity and compassion. When inclusion sits at the heart of that mission, hospices also offer something else: belonging.
At the end of life and throughout it everyone deserves to feel seen, respected and understood. My hope is that by sharing my story, and by continuing this work, hospices can become places where no one wonders whether they belong because they know they do.
Mirban Hussain
EDI Lead
Rotherham Hospice