Fred and Wayne’s Story

“There are a lot of things that he hasn’t shown any interest in before, but coming along to the Hospice and experiencing them for the first time, suddenly he’s interested in them. He’s keen to come and try them all out. It’s been very difficult in the past to get him to embrace anything, now it’s almost like I’m seeing a different person.”

Wayne’s father, Fred, was referred to Phyllis Tuckwell by his GP, in August 2022.

“He initially went to the Beacon Centre, to see the Phyllis Tuckwell staff there,” said Wayne. “There was a lovely nurse who explained what their care was all about. She really managed to open Dad up a bit. Up until then, I couldn’t get him to go out to any community centres or activities; he just didn’t want to meet with people at all.”

Fred moved to this area from Cornwall, where he had lived with his wife Margaret. She died in August 2021, when Fred was also diagnosed with terminal prostate cancer. “Everything just hit him at the same time,” said Wayne. “After my mother died, he seemed to collapse in, and then with his diagnosis I could see him deteriorating even further. We asked him whether he would like to come and stay with us in Camberley, which he did, but I was really struggling to get him to want to go out anywhere, or mix with people other than immediate family.”

The nurse who met Fred at the Beacon Centre, asked him if he would like to start coming to Phyllis Tuckwell’s Living Well with Illness sessions. These two-hour sessions take place weekly over eight weeks, and are held at the Beacon Centre in Guildford and Hospice in Farnham. Fred joined the Farnham programme, where he was able to see and chat with nurses, health care assistants, therapists and advisors, before attending a two-hour session run by one of the clinicians. Each week, the sessions focus on a different aspect of living with an advanced or terminal illness, such as managing fatigue, coping with breathlessness, sleeping well, or food and nutrition. There, Fred is able to meet other patients in a similar situation, finding company and peer support, and enjoy tea and biscuits and a chat. Throughout the sessions, patients are continually assessed, and clinicians discuss with them any symptoms they may have, as well as any questions or worries they may want to talk about. Staff can refer patients on for physiotherapy, occupational therapy, complementary therapy, counselling and pastoral care too, as needed.

“The nurse seemed to really connect with Dad. Somehow she managed to ‘break through’ to him. She encouraged him to come along to the Living Well sessions, and amazingly he agreed. I’d been to various community centres with him over the past few months, and he would go for the first day and then not really want to go back. But the Living Well sessions he absolutely loved! He so looked forward to them. There was a real zip in his step on the mornings that he was going to the Hospice. He was actually getting up and showering, and looking really smart, and so looking forward to coming over. When he finished those sessions, he asked if there was anything else that he could come along to, so he’s just started again now and is doing the Creative programme. I’m so pleased, because it’s got him up and out of the house and talking to other people. Before this, he was just focussed on staying in and only really talking to us, and not wanting to mix with anyone else. Since he started coming to these sessions, he’s really looked forward to coming along to everything and is really embracing it, which he wasn’t doing before.”

As well as caring for Fred at the Hospice, the Living Well team have also visited him at home.

“Physios have come to the house, occupational therapists have come to the house, they’ve advised on a few little changes we can make. Dad wasn’t getting along with the walker that he had, so they suggested something else, which he’s now using, and that’s been a godsend. There are lots of little things like that. The lovely thing is that when they say something, they do it straight away, and they follow it up really quickly, which has been fantastic. Everyone’s so kind and thoughtful; nothing is too much trouble. Dad’s really appreciated it, I’ve appreciated it, so I can’t say enough good things about Phyllis Tuckwell really.”

Fred has also seen our doctors, to find out more about his cancer and prognosis. “He’s seen a couple of doctors at the Hospice,” said Wayne. “One of the things I was concerned about was the progression of his cancer. He was given six months initially, when he was diagnosed, but he’s at nine months now and seems pain free, which is quite remarkable. The doctors at Phyllis Tuckwell were lovely and said they would arrange to examine him and talk to him, and see where they thought he was and what was happening, and they then followed that up with his GP. So many things are done online now, rather than face-to-face, so it was really great that they could see him in person.”

One of the Living Well sessions that Fred went to talked about our Home Support service. This service offers patients the opportunity to be visited by one of our Home Support volunteers. Each volunteer visits one patient once a week, for around three hours. They may sit and chat together over a cup of tea, or go for a walk or a drive, to a local garden centre perhaps, or to do some shopping. All of our volunteers are given initial and ongoing training and guidance, and are fully supported in their roles.

“After the Home Support service was mentioned in one of the Living Well sessions, Dad asked if there was anyone from Phyllis Tuckwell who could come out and visit him once a week, maybe go to the library or out for a walk and a chat. At first I thought, ‘oh, well I’ve been doing that with him, why is he asking for someone else to do it?!’ But then I thought no, it’s wonderful that he actually wants to talk to other people rather than just the family. It’s what I was trying to get him to do. The Home Support co-ordinator came out to see Dad last week. I left them together to have a chat, so he could tell her exactly what he felt and what he was looking for, and so on. She was lovely with him and he really embraced what she said. She said that based on everything he had told her, she could match him with a volunteer who would be best suited to what he is looking for, so she’s put that in motion and he’s got a lady who’s going to come out and see him every week. I think he wants to teach her chess or something!”

“Before Dad was referred I wasn’t entirely sure of the support that Phyllis Tuckwell offered. I knew there were people being referred and going into the beds in the Hospice, but the other support, like the Living Well service, I wasn’t aware of, and that support to us is a godsend. It’s so important to feel that I can talk to someone about how Dad’s progressing, and he wants to know where he is too. He’s been told six months, but here he is at nine months, so what does that mean? So the fact that everyone here says if there’s anything you want to talk about, they’re here to talk to you, whether that be with a nurse or doctor, or one of the volunteers, is really, really important to him. It’s important to me as well, to have someone I can go to and feel that they’re actually interested in Dad.”

One of the things that the team talk to patients about is whether they have thought about where they would like to spend their last days, and to die. Some patients have a clear idea of wanting to die at home, surrounded by their family and with the Hospice Care at Home team supporting and caring for them. Others may envisage dying at the Hospice, or may not have thought about it yet.

“As things have progressed with Dad’s illness, he’s already said that he would want to come to the Hospice at the end, which is another thing that he hasn’t wanted to discuss until recently. I think one of the nurses was asking him if he had thought about where he would want to be, at the end of life, where he would be and who would take care of him. I don’t know if he finds it easier to speak to other people about that sort of thing, rather than to family members, but I’m just pleased there’s someone here that he can reach out to and talk to, and ask the questions he wants to ask. It’s important that comes from someone else, not just me. It’s a very sensitive subject so it has to be done in a sensitive way, so that he can cope with the things that are being said.”

“I’m retired now and am more or less Dad’s full-time carer. I keep thinking each day about what I can do to try and make him feel that he wants to get up and do something today, because it’s so easy for him to just stay in bed all day. When he’s got things like the Living Well sessions to look forward to, and activities to do, it just changes the whole scope of things. There are a lot of things that he hasn’t shown any interest in before, but coming along to the Hospice and experiencing them for the first time, suddenly he’s interested in them. He’s keen to come and try them all out. It’s been very difficult in the past to get him to embrace anything, now it’s almost like I’m seeing a different person.”