Alan's Story

“I was diagnosed with stomach cancer and referred to Phyllis Tuckwell in June,” said Alan, one of our Living Well patients. “Being told I had cancer and that I needed palliative care was a lot to take in, and I was a bit apprehensive at first. When Luke came round to see me, I wasn’t sure what we were going to discuss, but he really put me at ease. He was absolutely excellent. He told me about the care that Phyllis Tuckwell provides, gave me an overview of the services, and then we went through the ReSPECT form.”

Luke is one of our Clinical Nurse Specialists (CNSs), who care for patients at home, at our Hospice in Farnham and at our Beacon Centre in Guildford. They are often the first of our team to see new patients, and can assess their needs, prescribe some medications, and refer them on to the most appropriate teams within our organisation, for ongoing support and care. When Luke went to visit Alan, he took with him a ReSPECT form. These forms are for patients to fill in to tell us about how they want to be cared for in an emergency. ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment, and the forms were developed by the NHS to create personalised recommendations for patients’ healthcare providers to use in an emergency, if patients themselves are unable to make or express their wishes.

“We did the form at my pace,” said Alan. “Luke asked me if I was ready and told me that there was no pressure, and that if I wasn’t ready it was fine to do it another day. I wanted to do it though, so he said we could stop whenever I liked, and because there was no pressure everything just flowed and it was easy to keep going. We filled in the whole form that day, right down to where I wanted to spend my last days, which is on the In-Patient Unit at the Hospice. He just made the whole thing easy for me.” 

Our 14-bed In-Patient Unit (IPU), at our Hospice in Farnham, offers symptom control and end-of-life care for patients. Here they can access 24-hour nursing care, and their loved ones can receive emotional support, too. Patients can see our doctors, occupational therapists, physiotherapists, complementary therapists, patient & family advisors, counsellors and Pastoral Care team, and their loves ones can visit them whenever they want, at any time of day or night.

Patients who do not need end of life care or intensive symptom management are supported by our Living Well team, which offers nursing, medical and therapeutic care, CNS support, pastoral care, and advice on financial matters such as claiming benefits. They also run group sessions on topics such as fatigue, anxiety and nutrition, and creative sessions such as mindfulness and therapies through nature.

“Luke told me about the Living Well groups, and also about the therapy that was available for me and my family,” said Alan. “He said that Phyllis Tuckwell could help me to tell my grandchildren about my diagnosis.”

Our team of bereavement counsellors are trained and qualified to support patients and families with their feelings of grief. They offer pre- and post-bereavement support to the relatives of our patients, through individual and group sessions, and can help patients to talk to their children and grandchildren about their illness, explaining it in a way that will be easier for them to understand.

“I’ve got a lot of praise for Luke – he was amazing. After that first meeting, he’s kept in touch. He rings me every couple of weeks to see how I’m getting on and he’s adjusted my medication too, as needed. I met him once at the Hospice because I said I’d like to see him there, to see what it’s like there. Other than that, he’s always at end of phone if I need him. If he’s not in the office when I call, I just leave him a message and he gets back to me. He’s very good at getting back to me, and I know that he’d come round to the house again to see me if I needed him.”

Our Living Well team invited Alan to join our Living Well with Illness programme. The team runs two programmes, each of which offers a weekly two-hour session over eight weeks. Patients can talk to nurses, doctors and therapists before the sessions, to discuss any problems or questions they may have, and can find peer support through meeting and getting to know other patients who are also there. The sessions run on a rolling basis, so patients can join at any time, and end with a wellbeing day where patients can meet with nurses and other clinicians to discuss the next steps for their care.

“I’ve done the Living Well with Illness programme; that was an eight-week course and it was excellent. Every session is on something different. Not everything in every session was relevant to me, but I took something away from them all. I was in a good group with people who interacted with it, and we all joined in. The course has finished now and when it comes to an end you feel at a loss, but that’s no one’s fault, that’s just life. The sessions can’t go on forever. I’ve been back to the Hospice since then though. I was invited to a male pamper day there, where I had a back massage and a haircut. The staff remembered me, which makes you feel like you’re not just a number, you’re someone they care about. I was made to feel very welcome right from the word go; the staff and volunteers are absolutely excellent. They’re very nice to talk to; you don’t feel like it’s forced, you genuinely feel that they enjoy chatting with you. It’s nice talking to the other patients there too. I had thought that Phyllis Tuckwell only looked after people with cancer; I didn’t realise they had patients with other illnesses too. When you’re talking to the other people there, it’s good because you don’t always know what’s wrong with them, it’s up to them if they want to tell you. I’m quite forthcoming, I don’t mind telling people I’ve got stomach cancer, but you don’t pry with the others there unless they’re forthcoming. We talk about being ill, but not specifics, and we talk about it but we don’t mope about it. We have a laugh and a joke too. I like to find a bit of humour in everything; you’ve got to have a laugh in life.”

“I like being at the Hospice; it’s a nice place. It’s always immaculate, clean and tidy, the décor’s really good and everything’s well-kept. The Dove Lounge, where we have the Living Well sessions, that’s a real chill-out, comfy place. There’s a café there too, which I didn’t know about at first, so that’s good to know.”

As well as finding support through our Living Well programme, Alan has also benefitted from individual counselling with our clinical psychologist, Liz.

“I wasn’t sleeping well, so I spoke to Luke about it and he referred me for some therapy. I never thought I’d ever have therapy, but I say to people now that if you feel you need it then take it. Liz has been absolutely amazing. She made me feel at ease, and it was easy talking to her. She said that she thought I was a bit on the depressed side, so she spoke to one of the doctors about getting me some tablets for that. I’m just coming to end of my sessions with her now. She really helped me to get through a dark time. My wife Wendy has had therapy there too, with Elizabeth. She had hers extended a bit, because she needed a bit of extra support. She’s also had online sessions for people who are living with someone with an illness. She felt a bit like me when those ended; they’re like a security blanket and you miss them when they come to an end. I used to look forward to going over to the Hospice on a Tuesday for my Living Well sessions. I’ve been invited to another Pamper Day, but it coincides with my chemotherapy so I can’t go. But I’m going to start the Creative programme in January, so I’m looking forward to that. Wendy and I are going to go to the new monthly drop-in coffee mornings, too. Some of the other patients have said there’s nothing you can do there with your partners. I mentioned it to one of the nurses and she said that they were setting this up. Your partner can’t come to all of the groups, but going to a coffee morning together is a really nice thing to do, so they can meet and get to know the others there, and then they know who you’re talking about when you come home and tell them about what you’ve been doing at the groups.”

“I can’t praise Phyllis Tuckwell enough. Everyone there makes you feel welcome, from the receptionists as you come in, right through to the nurses and everyone else. They’re not just nice, they’re lovely. They’re very caring people. The cakes that we’ve had in the Living Well sessions, from the kitchen there, and the lunches we’ve had, they’re all excellent. Even down to parking, that’s really well organised. It goes through the whole organisation. We’ve had brilliant care from them.”

Everyday we need to raise over £25,000 to provide our services free of charge to our patients and their families. Please make a donation today to support the important work of Phyllis Tuckwell.