Christmas at a Sue Ryder Hospice - Ben and Fiona's story

My mum was admitted to the hospice on November 29, 2022, and she wasn’t expected to make it to Christmas, so we actually celebrated Christmas on December 4 with the support of the hospice team. We were also able to celebrate Christmas proper in the end as mum lived until January 31, thanks, I think, to the care she received at the hospice.

I honestly didn’t know much about Sue Ryder beforehand, but I know a lot more since I have got involved with the Hospice User Group, which was actually a few weeks before mum passed. Mum wanted us to be able to give back to the hospice and I saw something in the paper about the hospice wanting new members for the group and thought, what better time to get involved? It was a good distraction for me at the time too. I think being involved with helping to change the hospice experience for patients and their loved ones is a nice thing to do and I’m still doing that a couple of years on.

Mum had stage 4 ovarian cancer and it was a very short time from her first tests in August 2022 to her terminal diagnosis. She was told it was terminal on November 22 and a week later she was in the hospice. It was a very difficult time.

Mum had a horrendous experience in hospital. She was forgotten about by nurses and treated in the most undignified way. She had mental health issues and was left without her medication which had a devastating effect for her and for us as a family. I think it was a Macmillan nurse who pushed for mum to get a place at the hospice.

The difference in the care she received from the NHS and then Sue Ryder was quite pronounced. Mum didn’t have a good healthcare experience with the NHS but when we got to Thorpe Hall it was such a stark contrast to what we had experienced in hospital. You go from a really clinical environment like a hospital and I didn’t know what to expect from a hospice. I thought it was going to be really sombre but that couldn’t be further from the truth. It’s a really bright and positive place – not how you think it will be.

I travelled with her in the ambulance to Sue Ryder Thorpe Hall Hospice and I was very anxious, worrying about what the care was going to be like and wondering if she was going to be in safe hands. Once she was settled, we sat down with one of the doctors for an hour and, in that hour, we learned more about mum’s condition than we ever learned during her weeks in the hospital.

Mum’s entire experience of cancer care was quite turbulent and she was in hospital from November 10 to 29 until she was transferred to Thorpe Hall. She developed a rare side effect of the chemo and her legs stopped working altogether. We didn’t have carers when she was at home so it was down to us as a family to get her from her bed to her wheelchair.

When we got to Thorpe Hall the doctor explained everything to us and even in that first meeting I felt that the level of care was very reassuring and that I could breathe again. I felt comfortable going home and leaving her there knowing she was in safe hands. She had her own room, she had a call button and it was such a stark contrast to what we had been used to. It's a really small thing but as the doctor was wrapping up, she explained how mealtimes worked at the hospice and said if mum ever wanted anything to eat she just had to ask. Because mum hadn’t eaten anything that morning the doctor ordered her an omelette and 15 minutes later the chef walked in with a steaming omelette and it just reduced mum to tears. You wouldn’t think a few cracked eggs could be so moving but she hadn’t received anything close to that in hospital. I knew that mum felt safe, and it was such a weight off my shoulders as I had been very angry about mum’s care to that point.

Mum arrived at Thorpe Hall on November 29 and we celebrated Christmas early on December 4 because we did not expect to be able to celebrate Christmas on the 25th. For mum, Christmas was her favourite time of year. She loved all the decorations and lights and bringing the family together. We gathered in the hospice Sanctuary and we put up Christmas decorations, played Christmas music and exchanged gifts. Just being together and having that time as a family was really nice. I took lots of photos and we have some lovely memories from that day. Then December 7 was my niece’s 8th birthday and the kitchen made her a surprise birthday cake. We didn’t know that was going to happen so that was amazing.

On Christmas Day itself we were told we could have a Christmas dinner with mum but there are a lot of us and we decided it would be too much for her to have us all gathered like that, so the staff facilitated us visiting in smaller groups. We decorated mum’s room with a Christmas tree and lights and there are pictures of mum wearing Christmas glasses.

It’s bittersweet to look back on our last Christmas with her. The staff were so accommodating in allowing us to make her room look like something from the North Pole. We brought presents in and put them under the tree. It didn’t feel sad at all in the hospice and during December they had several choirs come in and sing and there was a really nice atmosphere.

Mum developed really lovely relationships with the staff and it was nice that they allowed her to be herself, cancer wasn’t who she was. One of the Healthcare Assistants was my old school friend’s mum so it was good for them to reconnect too and reassuring for Mum to have her there. Mum also formed a very close bond with one of the paramedics at the hospice and I hold him close to my heart. Their patient/carer relationship was lovely. There were so many staff members who made such an impact with us. You do develop quite close relationships with staff when you are in and out of the hospice over such a long period of time. I think I saw more of them than my friends and extended family during that period. The hospice is a special place to be and I feel indebted to Sue Ryder because of the level of care delivered to my mum.

Because we have such a large family we were able to spread out all the visits. I would go in the evening at about 6 and to have that flexibility without being a burden to the nursing team was massive. It meant that I could have one-on-one time with my mum and other family members could have their time.

I know nursing staff see death every day but on the day mum died, seeing how moved the Sue Ryder team were, was very emotional. Mum was there for nine weeks in the end, and I remember one of them saying, ‘you are not just a patient, you are part of the Sue Ryder family’, and that comment alone made such an impact.”