Alan’s Story

Alan, one of Phyllis Tuckwell’s Living Well patients, was referred to their care after being diagnosed with stomach cancer.

“Being told I had cancer and 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.”

Luke is one of Phyllis Tuckwell’s Clinical Nurse Specialists (CNSs), who are often the first of the team to see new patients. They assess their needs, and can refer them on to other teams within Phyllis Tuckwell for ongoing support.

“Luke told me about the care that Phyllis Tuckwell provides, gave me an overview of the services, and then we went through the ReSPECT form.”

ReSPECT forms are for patients to fill in to explain 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 told me that there was no pressure, and that if I wasn’t ready then 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.”

“I’ve got a lot of praise for Luke – he was amazing. He rings me every couple of weeks to see how I’m getting on and he’s adjusted my medication too. He also told me about the Living Well groups, and the therapy available for me and my family. He said that Phyllis Tuckwell’s counsellors could help me to tell my grandchildren about my diagnosis.”

Patients who do not need end of life care are supported by Phyllis Tuckwell’s Living Well team, who run sessions on topics such as fatigue, anxiety and nutrition, and creative sessions such as mindfulness and therapies through nature.

“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; I took something away from them all. I was in a good group and we all joined in. I was also invited to a male pamper day, 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. It’s nice talking to the other patients there too. We have a laugh and a joke. I like to find a bit of humour in everything; you’ve got to have a laugh in life.”

As well as finding support through the Living Well programme, Alan has also benefitted from individual counselling with Phyllis Tuckwell’s clinical psychologist, Liz.

“I wasn’t sleeping well, so I spoke to Luke about it and he referred me for some therapy. Liz has been absolutely amazing. She made me feel at ease, and it was easy talking to her. She really helped me to get through a dark time.”

“I can’t praise Phyllis Tuckwell enough. They’re very caring people; it goes through the whole organisation. We’ve had brilliant care from them.”