Many people know about the end of life care that we provide, but aren’t always aware of the support we give to patients earlier in their illness. Malcolm, one of our Living Well patients, was referred to us by his respiratory team in 2024, and after eighteen months of care has now been discharged from our services.
“I can't thank Phyllis Tuckwell enough,” he said. “The support they gave me has got me through everything. It's totally changed my perception of hospice care.”
Malcolm started coming to our Living Well sessions at the Beacon Centre in Guildford, in October 2024.
“I was slightly apprehensive to start with, because it was palliative care, but I met Bev, one of the nurses there, and she was so reassuring in what she said, it changed my view. From the first time I walked in, they totally changed how I was and how I felt. It was quite amazing.”
“I've had lung problems since 2022, and it was getting progressively worse. I was waiting for a lung operation, but my respiratory team said it could be another two years before I had it. After they referred me to Phyllis Tuckwell, I went to the Living Well sessions at the Beacon Centre pretty much every week until my operation. And that's when my time with Phyllis Tuckwell finished.”
Initially, Malcolm came to our Breathlessness sessions, to help him manage the symptoms of his illness. He was then invited to our Living Well with Illness programme, and after that our Creative programme. These two eight-week courses offer two-hour weekly group sessions where patients can learn more about their illness and how to manage their symptoms. Led by members of our specialist team, including physiotherapists, occupational therapists, clinical psychologists and our nursing team, each session focusses on a different aspect of illness, such as food and nutrition, sleep, movement, and mood. Creative sessions such as confidence with cooking, mindfulness with clay, or therapy through nature, offer patients the opportunity to engage in a sensory activity whilst benefitting from peer and clinical support. From stuffed peppers and chocolate squares, to a pot of beautiful flowers, or a clay model, they are enabled to create something themselves, boosting their confidence and giving them a sense of achievement.
“We made things like a bird box, designed bottles with lights in, interesting things that took your mind off your illness. We did aromatherapy too, which was really helpful. We had a music session, which I really enjoyed, where you had to put forward your favourite record of all time. I put forward ‘Songbird’ by Chrissy McVie, which means so much to me. That was a great session. I built up some good relationships here. I missed the cooking session because I was ill that week. They were making little tarts. So Claire, one of the rehabilitation assistants, actually made them for me, for the next time I came in!”
As well as supporting Malcolm with the physical symptoms of his illness, we also helped him with the mental and emotional challenges that he was facing.
“2025 was a horrendous year for me. My son emigrated in the February and my mum died in the June. I was due to have my lung operation in the June, but it was cancelled last minute. Then I found a growth on my head, so I had to have surgery to have that removed, because they thought it was cancer. That was in the October, then in the December they thought I might have bowel cancer. Then eventually, the following February, I had my lung reduction surgery, where they took away part of my lung. It was a really traumatic 18 months. Even things like my hobby, I used to go motorcycling with my mates, that went, everything went, so my social life went as well. But Phyllis Tuckwell was here and that was the one thing that kept me going. I was poorly quite a lot of the time; I spent a lot of time in bed. I couldn't breathe, I had chest pains, sickness. But the one thing that kept me going was that I used to come to the Beacon Centre on a Thursday, and I'd look forward to it. I kept doing that; I rarely missed any sessions. And once I got there, I felt better. I feel like they got me through everything that was going on. I don't know where I'd be if it wasn't for Phyllis Tuckwell. I feel that I am here now because of them.”
Malcolm was offered some counselling sessions with Inga, one of our specially trained counsellors, to help him through this difficult time.
“It was just after my mum died, and everything was sort of collapsing. I got very depressed, really down. They pick up on everything, the Phyllis Tuckwell staff, and they asked if I wanted to see a counsellor. Inga had already done a couple of the Living Well sessions, so I’d met her before. I had a series of one-to-one counselling sessions with her, for six to eight weeks. We just talked about me and why I am like I am, and how I can get out of these feelings. She was brilliant. She’s such a lovely person. She really helped me through that low time.”
More recently, Malcolm has been attending our ‘Open Gym’ sessions, where patients who are able enough can drop in and exercise independently.
“For the last couple of months I’ve had sessions with Sue, one of their physiotherapists. I did some weights, but mostly I went on the exercise bike, and I felt better on the bike than ever I did! It was amazing. It was difficult to walk up there to start with, but when I was on the bike it just totally changed. I’d go with Richard, one of the other patients I met there; I made some good friends there.”
“I've got nothing but praise for Phyllis Tuckwell. You think it’s a place you go to when you're at the end, but it's not like that at all. I've come out of there a lot better than I went in, mentally and physically. I've still got problems; I’ve had part of my lung taken away and I still struggle to breathe sometimes, and that will be ongoing. I know I won’t be back to where I was before, but mentally I'm a lot stronger and I’m able to face things that I couldn’t before. And that's down to the people at Phyllis Tuckwell and how you're treated there.”
