Dr Jamilla Hussain, Consultant in Palliative Medicine at Bradford Teaching Hospitals NHS Trust and Senior Research Fellow at the Bradford Institute for Health Research, talks about Uncovering: A community-led effort in Bradford focused on understanding Pakistani womens experiences with end-of-life care.
Between July and November 2023, the Race Equality Foundation held a series of three
online gatherings dedicated to exploring palliative and end-of-life care for individuals living
with dementia within Black, Asian, and minority ethnic communities. These sessions were
designed to foster collaboration among clinicians, professional organisations, charities,
academics, and stakeholders committed to enhancing the end-of-life care experience within
the BAME community.
In Session 2 we heard from Dr Jamilla Hussain, a Consultant in Palliative Medicine at Bradford Teaching Hospitals NHS Trust and Senior Research Fellow at the Bradford Institute for Health Research, about Uncovering: A community-led effort in Bradford focused on understanding Pakistani womens experiences with end-of-life care. In this blog, Dr Hussain delves into the work of the Uncovering project and addressing health inequalities and palliative and end-of-life care through an intersectional lens.
‘Race’ equity at the end of life: community and beyond
I write this blog during a busy on-call weekend as a palliative care consultant covering community, hospital and hospice services for people approaching the end of their lives across Bradford. I’ve been inspired, as I often am, by the dedication, resourcefulness and work ethic of those professionals on the frontline trying to support people with complex needs out-of-hours. The experience and outcomes of the people and families we have discussed over the last two days rely too much, I feel, on the goodwill of such staff – who dig deep to go above and beyond to provide the right care, at the right time.
I’ve also been writing a grant with a community group in between phone calls. This grant
will (fingers crossed) build on a relationship close to my heart with the CEOs of WomenZone
– a community group supporting Pakistani women in one of the most deprived areas of Bradford. In 2022, using funds from a Hospice UK community grant, we ran a series of five workshops called the ‘Uncovering’ project. For the first time, these workshops opened-up discussions about death, dying and grief among the women accessing WomenZone. The project was formed to directly address challenges faced by ‘under-served communities’ because of inequitable support from local services and was delivered through a partnership between myself, WomenZone, local grass-roots poet Sharena Lee Satti and The Leap, Bradford.
The ‘Uncovering’ project was new territory for WomenZone and Sharena who designed and
facilitated the workshops, and the first time I was leading something about death and dying
in my community. Undoubtedly, it was one of the most fulfilling projects I have been part of
– I gained as much, if not more, socially, spiritually and psychologically as any of the other
women involved.
I was keen for the workshops not to be about telling the women what services are available,
discussing the importance of completing a ReSPECT or Do not attempt cardiopulmonary resuscitation (DNACPR) form or asking them where they wanted to die. Instead, I wanted it to be about exploring our thoughts and feelings together, listening and connecting. Through creative facilitation by Sharena we discussed our experience of loss and what meaning, if any, we had shaped around it, where we drew strength and support from and what would have helped during these times.
If I’m honest though, I did have a preconceived agenda. I wanted the women to focus on what we, as a community of Pakistani women, could do to support each other better. I asked the women to think broader than just what services did/did not deliver. But when I stopped talking and listened to their stories of love, loss, discrimination, helplessness and faith, it was clear that these women were desperate to be seen, heard and considered to matter by service providers. As women in the last year of life, as carers and as those bereaved, they faced challenges both within and outside of the community.
So, what now? Especially with increasing practice, policy and research focus on engaging and better ‘serving’ these ‘underserved’ groups. Do we as community members still need to recognise our strengths, organise and support each other better – absolutely…hence why I’m spending time away from my family writing another grant begging for a bit of money so we can continue to lead the work ourselves, for ourselves.
But also, we need health and care services to respond. Not with piecemeal activities where they ask marginalised communities what they want and then put together a celebration event with an opportune photoshoot. But by doing the work that’s really needed, the harder work, of recognising the role of prejudice and discrimination in driving inequalities, being courageous enough to face our personal and organisational role in enabling inequalities and doing the structural work needed for real progress.
This will allow those frontline workers, who in the vast majority want to provide good end-of-life care for all and are already sacrificing and ‘serving’ too much, to work in an environment that makes equitable end-of-life care possible.
Sharena wrote a poem, ‘Can you See?’, based on the workshops delivered through this
project. You can find it here on her website.
