A St Catherine’s supporter is speaking out about his experience of the hospice from a gay man’s perspective, as he welcomes the charity’s campaign with Hospice UK to ‘Open Up’ hospice care to all.
Steven Marsden-Lloyd is helping to spread the message that hospices are here to support the whole community – regardless of people’s age, gender, illness, disability, ethnicity or sexuality.
It comes as new research revealed by Hospice UK found that LGBT (lesbian, gay, bisexual and transgender) people may experience barriers to palliative care.
The analysis highlights social determinants known to correlate with poor access to appropriate care – such as being single, not having children, or estrangement from one’s birth family – as potential obstacles, along with the real and perceived pressure to hide one’s true self. It found these challenges are also experienced by partners and spouses before and after bereavement.
Steven, who volunteers in the St Catherine’s gift shop and takes part in various fundraising events, experienced the ‘phenomenal’ and non-prejudicial support of the hospice last year, when his husband Peter was cared for in the inpatient unit.
Peter died aged 41 on 2nd August, after being diagnosed with renal cancer just three months earlier. Here, 45-year-old Steven explains how he felt like he couldn’t fully be his true self and offer Peter the emotional support he needed during those crucial few months – until the couple came to St Catherine’s Hospice.
When Peter was admitted to hospital he was put on a ward of males. I appreciate that this is the norm, but things became difficult as his condition developed.
The difficulties stared the morning he went for his surgery; he was very distressed and I felt I could not comfort him fully. I felt uncomfortable expressing our relationship in a room full of other males and their families.
Maybe they wouldn’t have cared, but it still felt incredibly uncomfortable. As a result, this one occasion now haunts me for not doing more to comfort Peter, as I had never seen him so scared and distressed.
As the days followed and we learnt the extremes of Peter’s condition, again I felt restricted to comforting both myself and Peter in a room full of others. This was the most horrendous time of our lives and I felt I couldn’t even do the simplest thing – to hold Peter.
This changed completely when we came to St Catherine’s. It’s really strange because until I learnt of Hospice UK’s findings in relation to gay people experiencing ‘barriers’ to accessing palliative and specialist end-of-life care, sexuality never even came in to my thoughts about Peter’s stay at the hospice.
From day one everything was about Peter’s care and nothing to do with his sexuality. He had his own privacy and this proved vital for the last few weeks of his life; it made such a huge difference to us as a couple. I got to spend all day, every day with him, holding his hand and doing all the normal things that anyone would do in that situation.
We even celebrated our second wedding anniversary at the hospice, and the amazing nurses decorated one of the family rooms and gave us a cake and bottle of prosecco. I still get emotional now thinking about that incredible memory which the team at St Catherine’s helped create for us.
Throughout Peter’s stay in the hospice, I was treated respectfully as Peter’s husband, and not as a ‘gay’ couple. That’s why it’s quite worrying that some minority groups feel there are barriers to accessing hospice care. People can feel so vulnerable and alone during those difficult times, so it’s really concerning if they’re not getting access to that valuable support which we experienced.
I was initially quite frightened about the idea of Peter staying at a hospice; nobody had explained to me what palliative care is and I didn’t really understand that hospices aren’t just places where people go to die. I thought it would be gloomy and miserable; I had a very different impression of what St Catherine’s might be like before I came here.
The reality was the complete opposite of what I had expected – everyone was so welcoming and genuinely caring. They care for the whole family, not just the patient.
That’s why I think the Open Up campaign is brilliant. It’s helping to reach out to more people and communities, helping them to understand what hospices are really like, and raising awareness that they’re here for everybody, no matter what their background or circumstances.
I’m so glad that the last few weeks I got to spend Peter were filled with love, respect, and free from any prejudice. That’s why I love St Catherine’s to this day and want to do what I can to support the charity, so that the staff and volunteers can continue to give the same level of amazing care and support to other patients and their families.