The Anne Robson Trust’s Butterfly Volunteers provide companionship to terminally ill patients who are spending their last days in hospital. Founder Liz Pryor explains why their work is so important.
Liz Pryor set up the Anne Robson Trust in memory of her mother in 2017, with the aim of ensuring patients who are terminally ill in hospitals are not on their own. “There are too many people dying in hospitals without any support at all and without any family” she explains. “I’d like to see as many hospitals as possible setting up and running teams of volunteers to support their palliative care team, and patients and their families.”
“We come across so many elderly couples who have no support from extended family or friends, so you’ll find that an elderly lady who’s been with her husband 50 odd years and is watching him die, is terrified. Our volunteers support these people and I think make quite a big impact on them. I had a call from a gentleman yesterday whose mother died last week, and he said “I’m an only son, my mother was an only child as well, we have a very small family. I work and I couldn’t be with my mother all the time, your team of volunteers was such a comfort to me.”
Volunteers don’t need to have any specific skills, but compassion and being able to listen are essential. “When you’re sitting with someone you need to be in the moment with them. My colleague Jo always says as a society we have grown away from our intuitive feelings and we need to come back to them, to just be present with somebody and be there for them.”
The volunteers work very much as part of a team, with a rota system of morning, afternoon and evening shifts that ensures they don’t become overwhelmed. “We’re not asking volunteers to sit with Mrs Johnson until she dies, we’re saying you’re there to make sure she knows she’s valued and loved, and has somebody with her to give her whatever she might need in that hour, two hours or 40 minutes, whatever time you decide to spend with her. Then you go away safe in the knowledge that there’s another volunteer coming in later, but you don’t take responsibility for that patient, it’s the teams’ responsibility, not one person’s.”
Liz explains that while it can be a challenging role, volunteers feel that it’s an honour to be with someone in their final hours. “If the volunteers weren’t getting a huge amount out of it they wouldn’t continue to do it” she says. “I think the scheme we run is beneficial for everybody. It benefits the patient, the families, and their extended family because they can talk to the volunteers. They can make sure they’ve got a free parking pass if they need it, and some hospitals offer free meal vouchers for families of patients at the end of life. There will be different things that different hospitals offer and the volunteers will know what they are.”
She emphasises that they are not meant to take the place of a nurse, but for a hospital to have a team of volunteers to call on is very helpful. “It can be hugely stressful for nurses knowing that one of their patients is dying and that they’re on their own. I had a long chat with a nurse the other day who said she goes home and cries because she can’t sit with a patient. They can’t spend the time they want to spend sitting by their bedside because they’ve got other patients to look after.”
Last year the Butterfly Volunteers supported 472 patients at Princess Alexandra Hospital in Harlow, spending 720 hours by the bedside. Most recently they’ve started working with the Norfolk & Norwich NHS Trust, a huge organisation with 1100 acute beds, and next they plan to start working with the East Suffolk & North Essex Foundation Trust this summer. Additionally there are a further eight hospital trusts who have expressed interest in working with them.
The trust has also recently begun running workshops called The “D” Word, practical, three-hour sessions that aim to start conversations about death, and that can be tailored to suit all kinds of audiences. So far they’ve delivered sessions to student nurses at Ruskin University, care home staff and hospital clinicians. During one particular workshop the class came up with 27 different words for death, highlighting the need to have more honest discussions on the subject.
“We’ve got to find our courage and take back control of death and dying in this country. What tends to happen is someone looks like they’re deteriorating and their family calls an ambulance, but in the past granny used to die in the middle of the house with everyone there. It’s become a taboo. All we’re trying to do is get people to start thinking about it, make some plans, and put them in the drawer.”
“I’m just really keen that people are supported at the end of their life” Liz adds, “and that what happened to my mother doesn’t happen to them, which was to be left in a side room and then we came home only for her to die a few hours later when initially she wasn’t anywhere near dying. That felt so wrong to me that it was the springboard to start doing this work. I think you can have a good death, and that’s what I’d like to see happen.”
For more information visit The Anne Robson Trust