Here at St. John’s Hospice we take great pride in the essential palliative care we deliver to our patients – but we don’t often get a chance to stop and recognise all the things that make our Hospice so special.
We sat down with Elizabeth Palfreman, our Head of Fundraising, who has worked in palliative care for 16 years, and Ali Floe, our Hospice Corporate and Philanthropy Fundraiser, to hear what makes our Hospice such a uniquely comforting place to be.
Part of our care involves helping people realise they are never alone when dealing with a life-limiting illness. Our team of carers are always on hand to provide support, but sometimes building a friendship with someone who is going through a similar experience can be even more powerful.
“We have one group of marginalised Afro-Caribbean women who are HIV positive and incredibly subjugated for their HIV status,” says Ali. “The diagnosis cuts them off from their community, but Caroline Ayers (Specialist Occupational Therapist) set up the group because she wanted to show these women they were not alone.”
The group began as a craft group, so none of them knew the other women in the group were HIV positive and had also been left by their respective husbands; to them it was just a craft group that certain patients were invited to.
Over time they started to open up in a natural way about themselves and what they had been through. “Now they have a WhatsApp group,” says Ali. “They’re always in contact with each other; when one goes to the hospital they all go and visit. Thanks to the group and the connections made, these women felt empowered to open up about their status and, in some cases, start treatment. That is hugely powerful.”
“When HIV first emerged there were a lot of hospices who were unsure about HIV patients because of the unknowns around it,” says Elizabeth. “St. John’s is very special in that sense. I’m not aware of another hospice that has a bespoke HIV support group.”
Our Hospice team prides themselves on tailoring their care to the patients’ needs. “It’s never one size fits all at our Hospice,” says Elizabeth. “We always want to tailor the care to what our patients and their loved ones need.”
This is perfectly illustrated by the bereavement support groups we create for our patients’ family members. “We had a patient who lost her mother in the Hospice and she set up a book club as part of her bereavement journey,” says Ali. “Our Bereavement Services Coordinator Robert Moroney helped her set it up and it’s become part of our bereavement care. Then there are others like the Out And About Group. Robert discovered that grieving people weren’t getting out enough or doing enough exercise so he started a specialised group to address this.”
Our dedicated team of staff will always adapt to whatever the patients’ needs are. “We had a patient with MND who had been coming to the Hospice for a long time in the day care unit,” says Ali. “As her illness progressed, she was finding the chairs too hard to get in and out of and she was becoming a fall risk. We ordered her a new chair but while it was on order she couldn’t come into the unit. We asked her what she was going to miss about not being here and she said it was her complementary reflexology – so we sent the reflexologist to her home.”
“Usually complementary therapists are volunteers, but not at our Hospice,” says Elizabeth. “Here, they are members of staff so we can always be more agile with the treatment they deliver. They go above and beyond to go out into the community when someone can’t get to us.”
Longevity Of Care
Most hospices don’t have a choice but to put a time limit on the care they can provide a patient, but St. John’s is quite unique in this sense. The average Day Care programs at other hospices is 12 weeks but St. John’s spends an average of 566 days with our Day Care Unit patients. “There is an initial programme from three to four months,” says Elizabeth, “but beyond that we don’t tell people ‘that’s your lot’ – we often have patients in our day centre three to four times a week for years.”
“Last year we had a patient who didn’t have any family members,” says Ali. “They were a refugee, who was found in a friend’s closet. They had advanced cancer, and we tried to help them at home but their friend couldn’t manage to support them both. Eventually we admitted them, and they were in our inpatient unit for 7 months because we knew if we discharged them they would be homeless. Throughout that time our social work team were fighting for her to get refugee status and housing benefits.”
State Of The Art Facilities
Our Hospice exists within a private Hospital, but the care we give our Hospice patients is always free, including any care they might receive from our Hospital. “We’re surrounded by countless specialists on site,” says Elizabeth, “and that is invaluable in terms of the level and standard of care we can deliver.”
When patients are feeling vulnerable, being able to be seen swiftly with no waiting time can offer them a respite from the anxiety of the unknown. “Our Hospital allows us to take on more complex patients because everything we need is literally on our doorstep,” says Ali.
Our Ambulance Service
Elizabeth has worked in palliative care for 16 years so speaks with some authority on what sets our Hospice apart. “A lot of hospices rely on volunteers – and they are essential in hospice care – but that can become hard during something like COVID when they were under lockdown,” says Elizabeth. “That wasn’t the case for our Hospice, however, because we have our ambulance team. The equipment they have and the ability to get patients up and down stairs allowed our shielded patients to actually get out. It is a very special service we’re able to provide.”
“Our ambulances have done it all – they’ve even driven patients to weddings in the past,” says Ali. “During COVID they’ve been doing food deliveries and taking patients to doctors appointments. In many ways our ambulance team represents the best our Hospice has to offer; they are tireless in delivering the best in class palliative care.”
Something we will never tire of is singing the praises of our amazing staff. From our nurses, social workers, doctors, therapists, the bereavement team, fundraisers to our wonderful Hospice@Home team – we will never stop going above and beyond for our patients.
“What I love about our staff is they ask ‘why not?’ never ‘why?’ and that is something hugely powerful,” says Elizabeth. “We consider what needs to be done, and we do everything in our power to make it happen.”