On World Hospice & Palliative Care Day, when we celebrate and highlight the importance of hospice and palliative care worldwide, we are sharing Sam’s story, whose wife Julia was supported by Sue Ryder Palliative Care Hub South Oxfordshire during the last year of her life. The couple were referred to Sue Ryder’s expert team when Julia’s long-term health problems escalated and took comfort from the compassionate care and support they provided.
Julia initially had a brain tumour removed in 1988 and after recovering from the operation had no further symptoms until 2000. Sam said: “We met in 1999, and unfortunately, she started getting symptoms again the following year and there were various issues from then on. She got tumours that would regrow and although they weren’t cancerous, she needed seven or eight invasive surgeries to remove them from her brain and spine.
“She coped pretty well up until 2013 and she was still able to work. She had a wool shop selling knitting wool and supplies, which she loved. It brought together a lot of her skills and passions in one job. Then, following the surgeries in 2014, she had to give work up.
“The surgeries probably saved her life, but unfortunately left her with various problems. She was very tired and had some balance problems and she was diagnosed with epilepsy in 2013 and as a result she had to take medication with some pretty strong side effects.
“In the last year or two of her life there was less she could do. It was getting harder for her cognitively. She couldn’t knit any more or read and it was harder for her to follow conversations.”
“Nothing was too big or too small. I really got that sense that they were there for anything”
In the summer of 2019, Julia was referred to Sue Ryder Palliative Care Hub South Oxfordshire and the couple were supported by Clinical Nurse Specialist, Katie.
“We started having Katie from Sue Ryder come to visit us and talk to us about the different kinds of help available to us. Even with our familiarity with the NHS system, it could still be frustrating and difficult for us to navigate things. But I really felt like there was nothing we couldn’t ask Sue Ryder about. Nothing was too big or too small. I really got that sense that they were there for anything and were happy to help. The main thing for me was just the reassurance that they offered, that we were not alone with it all.
“Katie arranged physiotherapy for Julia via the Palliative Care Hub. Julia went there for a few sessions and then after the pandemic hit she had a few online sessions. She also arranged counselling for me and counselling for Julia.
“We had a fantastic social worker and we also had support from an amazing doctor. The doctor took an interest in everything, both Julia’s mental and physical health. She took a really holistic approach and gave us a huge amount of time. She liaised with Julia’s consultant at John Radcliffe Hospital in Oxford, which made things much more joined up.”
Julia was hospitalised following a bad fall in August 2020 and due to the Covid-19 restrictions, Sam was only able to visit her for an hour each day.
“She just didn’t recover from that fall and in some ways it was like we weren’t fighting for survival any more, so there was almost some relief in that. The palliative care started and Sue Ryder was great at that point. Julia was able to come home to die.
“A special hospital bed arrived, the right drugs arrived, Katie liaised with the District Nurses for us. We thought Julia would have longer at home, but actually it was just a couple of nights and a couple of days.
“The Sue Ryder Hospice at Home team were there quite a bit of the time and the district nurses were coming in as well. It all happened really quickly. The Hospice at Home team were very sensitive and I never felt like they were in the way. At that point, it was possible for friends to stop by one at a time and sit with Julia and five or six of them did that over the two days. So for me it was actually a really rich time and I hope it was for Julia, too. The Sue Ryder staff were very respectful of Julia. They showed huge sensitivity and great compassion.”
Continued support after losing Julia
Julia died on September 3, 2020, and Sam has since been supported by the Palliative Care Hub’s online bereavement services.
“My counsellor Will was incredibly helpful and I can’t praise that service highly enough. Friends are great, but to have a dedicated space to talk it through with someone was invaluable. After Julia died, he and his colleague also set up an online bereavement group. We were meeting once a week over 12 weeks, about three or four of us.
“I found being able to offer support to someone else is a great healer. If you can offer some support to others, even if just through sharing your own experience, it’s more empowering than just being a recipient of help.”
World Hospice and Palliative Care Day
On World Hospice and Palliative Care Day, we celebrate and shine a light on the vital hospice and palliative care support provided by teams across the world.
With a theme this year of ‘Leave no-one behind - equity in access to palliative care’, we hope that the stories we share by those who receive care and those who provide it will demonstrate the crucial importance of hospice and palliative care.
Online Bereavement Support
If you are struggling with grief after losing someone, our Online Bereavement Support makes it easy to connect with the right support - whether that's information, qualified counsellors or a community of others with similar experiences.