40 Cups of Tea: Reflecting on PCC 2026 Brighton and Touring St Peter and St James Hospice
I arrived in the UK on Monday, the 23rd of March, into London’s usual frenetic activity. Lights bright, voices loud, except on the subway, where commuters seem to downregulate, immersed in their tech world. My academic week started with a bang, meeting a new connection at the University of Cardiff to chat through some creative ideas for scaling postgraduate palliative education without increasing costs. I hope to draw on their model of honorary collaborators to improve feedback affordably. I finished the day with a stimulating dinner with one of my many siblings, currently busy with her own master’s degree. Kudos to Claire, who submitted her thesis at the time of publishing his blog. Massive congratulations.
Barbara arrived on Tuesday morning, which required me to get myself out of bed at quarter past six. Those who know me will know that this is an unusual event. Recovering from the early morning and an Old Fashioned, courtesy of an enjoyable meal out the previous night, I had arranged a low-intensity online meeting in the morning to talk through some sexual healthcare content. This gave Barbara a moment to rest after the long journey from South Africa and settle into our London accommodation.
Barbara and I spent the morning talking about the week ahead and enjoyed a tasty tapas-style lunch a short walk from the Tate Modern. A number of years ago, I stumbled across the collection of Rothko paintings hanging in their dedicated room. I was unable to stay with the paintings at that time. When my sister let me know that the Rothko paintings had returned to the Tate Modern after a long touring exhibition, it was important for me to visit these works once again. I felt a stillness moving amongst the enormous canvases and deep pigments. It set the tone for Barbara and me to begin thinking.
We travelled to Brighton on Wednesday, 25th March, and made a beeline for the ocean side. Sitting in the Grand Hotel on the foreshore, we honed our presentation for the Brighton Palliative Care Congress. It was stimulating work, and we quickly found our groove, which we have come to know well.
That evening, we facilitated our usual Wednesday Write Club, where our long-suffering attendees got to listen in on the first run of our upcoming presentation for the congress. Barbara was suffering from a poorly timed viral illness and was not feeling well. She took to her bed early, leaving me to take myself out for a drink. Initially, I was in search of a good martini to connect with a bestie who should have been at the Palliative Care Congress too. She missed it on account of other life events. It was also her birthday. Sláinte to darlin’ Ann.
Quite expectedly, perhaps, I was dazzled by the bright lights of a drag bar hosting a delightfully amateur karaoke competition. A panel of three – a Scottish queer (AF) man, a spicy Irish woman and an English drag queen – were critiquing the performances. We well know that the queers do this better than anyone else.
Thursday morning saw another early start. What a thrill to be surrounded by a whole room of palliative care providers, and how odd to know almost no one. This is a space with which Barbara and I have become familiar. Apart from the swarms of people, over 180 posters were on display over two days. It was overwhelming.
In her keynote address, Lucy Selman spoke eloquently on her work considering grief and shared information concerning the Good Grief Festival, which she founded in 2020 – the festival has now hosted over 300 events and has been attended by more than 35000 people since. So often, the prevailing narrative of healthcare workers is that people do not want to talk about death and dying. Lucy demonstrated that when you make space to talk about grief, people fill it. The images from the last festival showed a diverse range of expressions of grief. One image that stood out for me was a simple poster reading: “Let me be sad.” Simple, and a reminder that grief and sadness are valuable emotions that do not need to be avoided.
We attended the initial conference sessions and quickly became overstimulated. Barbara and I attended a workshop considering the role of lived experience in palliative care research. I found one of the key arguments (that lived experience is an important validator of research) really compelling. While this workshop primarily considered the role of the healthcare user’s lived experience, I found myself thinking about the lived experience of the palliative care provider in systems design and clinical practice, including resilience and self-care.
We took a seat on the floor at lunch, much to the surprise of the British onlookers, who averted their gaze as they navigated the Brighton Dome. It is a historic venue, for sure. That evening, we attended the conference dinner. It was a small event held at Redroaster, a restaurant attached to the Brighton Dome. Enjoyable food was accompanied by engaging conversation with our fellow conference delegates, yielding ever more connections and another excuse to travel around the UK.
Friday saw an early start once again. This is a pattern I do not recommend. Our nerves and our need to rehearse took us to the Puzzle Bored shop. What a rad concept: a coffee shop designed around puzzle building. We quickly completed a small and imperfect puzzle. This is especially appropriate as over that week, we completed and submitted the Access to Palliative Care Puzzle Model for publication. The coffee was good too.
Intrigued by the workshop we attended on Thursday, the concept of lived experience was further developed for me by a poster that caught my eye. It considered an idea I had never heard of: phronesis. The idea that practical wisdom has a special place, particularly in palliative care, where evidence is hard to create and difficult to compare. These two concepts, of lived experience and practical wisdom, framed Barbara and my presentation beautifully as we spoke of our thought partnership.
Our presentation was extremely well received. Barbara and I had full permission to geek out and to talk on the alchemy of our minds meeting. We had some fangirls cheering us on because of a conversation we’d had the previous day. Linda Holding was also present and played a good sport with the inside jokes that emerge when you put like-minded people in the same place. We shared the stage with Prof Michele Aaron of Warwick University, who spoke on the importance of queer visibility in healthcare, using film as a medium, and with four art therapists working in a hospice setting.
Also in attendance was a colleague of Michele’s, Dr Jed Jerwood, from the University of Birmingham, who made immediate connections with my work concerning queer-affirming palliative care. Jed works with No Barriers Here, an inclusive, workshop-based methodology for advance care planning, particularly for marginalised groups in healthcare, including queer-identifying people. This is worth your time; watch their short film online at https://www.nobarriershere.org/. Is it any wonder that we have already set up a follow-up meeting? The message was hard-hitting. We are not all made of words, and using other media allows people to express their healthcare needs. Another chance connection from the presentation was a freshly qualified doctor who had completed his mini-thesis on queer-affirming healthcare and had a poster accepted for display. We have been in touch since the conference, and he has graciously accepted my invitation to collaborate with JoAn Stanek on my queer-affirming palliative care content. Look at the blog post about my time in North Carolina for more details on this project.
The idea that language can be restrictive was also powerfully demonstrated in Loren Siemens’ address, which showcased their work with asylum seekers in the UK. This was approached sensitively, with the community’s needs considered first. This is a community that has faced more loss than most of us will ever know, losing home, family, power, language, and community, amongst other immense losses. The seemingly simple project involved a low-cost intervention: building tiles, breaking these tiles, and remaking them. Many of these participants did not have good English, and they were encouraged to share only if they wanted to.
This project was about showing up, connecting, and shared humanity. Although it was about loss, the connection with St Christopher’s Hospice (where Loren is employed) was not immediately apparent. What this project did was to create trust. It was through trust that the good work of palliative care could, and can, be shared. Loren shared a statement that hit home, cutting to the core of the work I have been doing on queer-affirming palliative care: inclusive healthcare is not simply about access. It is about trust and healing past relationships.
“Addressing inequity and mistrust isn’t just about improving access to services. It also involves the slow work of tending to broken relational histories.”
Apart from the academic stimulation, the new connections made with like-minded disruptors from hospices across the UK and Ireland was a highlight. We clicked quickly. These new relationships are promising for collaborations. This was the fourth congress that Barbara and I have presented at together, the second since the formation of our think tank. It is clear that our think tank is taking a different form than we had expected. Isn’t that exciting?
At the end of the second day of the conference, Linda Holding joined us to celebrate our shared successes. Linda had presented a poster on the use of Penthrox in the hospice where she works. We finished the last of the Life from Stone that Barbara brought from South Africa. What sweet nectar of the gods after slumming it with French and Italian wines over the past few months. We saw Linda off home, ready to connect with her on the following Monday when we planned to visit St Peter and St James Hospice, where she currently works.
Barbara and I set out to find the perfect fish and chips. What we found was not disappointing, albeit significantly schmancier than what we had planned. I would return for the ambrosia served at English’s Restaurant.
I did not come to Brighton not to celebrate my queer. Apart from being able to queer-geek out with fellow academics, I got to experience more queerness than I have for some months. On every door, there was signposting for safety. There was easy, casual intimacy walking the streets, sweet hand-holding and impeccable fashion — a sea of people who appeared to be at ease with themselves. So, once Barbara’s energies waned on account of her viral plague, and on the recommendation of Sabrina, our youthful waitress for the evening, I was directed to a social club. When 1 a.m. hit, I moved over to Revenge, just in time for a drag queen-operated dance floor and short drag show. I felt safe. Consent was respected. All around were reminders of inclusion and spaces for queer health. Perhaps this is made more profound by its absence elsewhere.
It was an interesting experience for me to consider my age and stage. I was asked for my ID twice. “If you look under 25, you may be asked for ID” was posted on every door. Interesting flattery. But on the dance floor, I felt myself to be one of the older people there. I have always enjoyed sneaky looks, and at least get a second glance on occasion. These days seem to have gone. When did that happen? When did I age out? The only comments I got in Brighton was that I seem to be having my own party. This is a true compliment and an accurate statement, for sure.
The next day, after a short morning exploration, we left Brighton tired. No, not tired, exhausted. No, not exhausted. What is more than exhausted? Barbara finally lost her voice altogether, and we retreated to Copthorne, where we rented a small home to rest and continue thinking.
On our second-to-last day, Barbara and I visited St Peter and St James Hospice in Sussex, where we met our friend and colleague Linda Holding. Linda has relocated to the UK after working in palliative care systems and funder design in South Africa for some time and now practises as a specialty doctor in palliative care. Linda has been in this post for about a year and offered to show us around the hospice. Barbara and I decided on a slower morning, opting to Uber to the hospice for a gentle 10:30 start. We made good choices, as the hospice is situated in a woodland, and any public transport would have seen us finish with a 25- to 30-minute walk to get there.
As we drove into the hospice grounds, a tranquil walking trail appeared on the left, called The Woodland Walk. The path is well-kept and ambles through the tall trees, casting gentle shade. It was a beautiful day. The hospice entrance is welcoming, with a single receptionist who showed us to a small waiting room. Linda joined us a few moments later and began to talk us through the basics of hospice.
On the whole, the central ideology was familiar, with a few small differences in how the service is operationalised. What was immediately apparent was the difference in resourcing. Linda shared that while a portion of the budget comes from the NHS, it is small. This is familiar. However, what we see manifest is quite different to the South African context.
Linda had put together a welcome pack for us, which would usually have been given to patients to explore the hospice’s service offerings, along with some practical tools. We started our tour immediately adjacent to the waiting room in a small wing that houses consultation spaces for clinicians, physio, and counselling. Linda mentioned that spiritual counselling was thin on the ground at the time, with their spiritual care person on some time off. What a joy to have a spiritual carer on staff. I remember that we were extremely fortunate at Hospice Wits to have Cameron Hogg for some years. This support was invaluable.
These consulting spaces, Linda explained, are used when patients are able to attend and are mobile. The rooms are situated close to the Living Well Centre, which hosts patient- and carer-focused events. These are all offered at no cost to families and patients and include a variety of events, such as arts and crafts, aromatherapy, support groups, teas, and more. Pamphlets of what is available line the walls. I was thrilled to hear from Linda that this space is well attended. The Living Well Centre. Yes, I like that. I have learned since that this is not uncommon in the UK.
We then turned to walk through to the clinical section of the hospice. As we walked past the kitchen, Linda mentioned that the quality of the food at the hospice is excellent and that staff members are welcome to place an order. I like the idea that staff, patients, and families are sharing food. This creates a sense that my reality and yours are shared. It blurs the experience of the healthcare worker and the healthcare user.
We take a step into an empty room. It is well laid out, overlooking a small private garden. There is a family bed available. It is a Murphy bed – young Craig Geoff is having a meltdown at the brilliance of this. One of my long-held bugbears in healthcare is the sanitisation of sexuality and bonding from healthcare spaces. I am pleased to learn that wider beds are available at this hospice. They are sweetly called huddle beds. I wondered then, as I often do, if vulnerable people feel strong enough to ask for a space for intimacy, should they need to. It is good to know that the option exists.
As we progressed through the ward, we encountered Charlie, whom we had briefly met at the Palliative Care Congress in Brighton, sitting in the doctors’ room. He is one of the palliative care consultants. He was busy with the familiar task of death documentation. We could all do better to acknowledge the importance of this moment. Where is the ceremony for healthcare workers? That said, I saw someone had put together a learning corner on tracheostomy care. This was in response to a recent patient’s needs, who required this type of care. It was designed to upskill hospice workers, though it focused on medical staff and was housed in the doctors’ room.
We progressed down the passage to a busier clinical space. We had a short discussion with some of the nursing staff regarding JICs (just-in-case medications), focusing on medication selection and local differences. Notably, we considered prescribing practices from a sustainability perspective, given that many of these items go unused. This well-meaning practice has evolved around a system that sees a practical disconnect from the work of palliative care and scripting. A patient’s GP is required to script medications, while the palliative care team directs care at home. It feels to me that this was a responsive rather than an intentional design, and should be interrogated for appropriateness and sustainability.
I am surprised how similar care looks here. Yes, resourcing is different. Most rooms are equipped with hoists, air conditioning, and other posh things. The working spaces are modern. They appear more swish. But the truth is that the care we have come to offer and expect in South Africa is good, and we achieve this despite being resource-strapped.
Linda took us along a quiet corridor, explaining that budget cuts have led to some beds being decommissioned. These beds are sometimes used for family members when needed, but are otherwise unused. As we approached the last room, a radio was playing softly. Linda skrikked as one of us bumped something or other. She explained that this is a haunted room and quickly escorted us back to the reception area!
As a parting shot, we were told it was absolutely mandatory to have a brief visit with the hospice’s iconic donkey mascots. We greeted them as they sweetly munched on, oblivious to the good work carried out close by.
Linda kindly took us to the Haywards Heath station. We were not in a rush and made the important executive call to walk up to a local tea shop for a famed cream tea. What would a trip to the UK be without it?
We returned home to our bungalow in Copthorne for a final afternoon of work, firming up the connections we made at the congress, and completed the final edit of our Virtual Palliative Care Handbook. We celebrated this with a bottle of Italian prosecco. It is not as appropriate as, nor does it hold a candle to, our wonderful South African sparkling wines. It was exciting all the same to just about finish a project that has occupied us for so long.
At the start of our trip, I purchased a box of Tetley’s. There were 40 teabags, and we used the last on the last morning in Copthorne. A perfect fit. I appreciate so much that we continue to learn and create together. Working with Barbara is a joy. And I look forward to our next trip together, which will be in June in Cape Town.
Watch this space as we prepare to launch the second edition of our book. Officially.