Colin started coming to our Living Well sessions after an early referral from his consultant at Frimley Park Hospital.
“Colin has a long-term diagnosis, but the team at Frimley couldn’t give him chemotherapy, or radiotherapy, or any kind of treatment plan, because of his age and strength,” said his daughter, Nicky. “So they said they would refer him to Phyllis Tuckwell, where he would have a support network that would allow him to continue being able to move forward with his life, and every week have something to look forward to, and would also give us as carers some support.”
Initially, Colin and Nicky both thought that a referral to a hospice care organisation meant that Colin was nearing the end of life.
“My perception was that's end of life care, so what does this mean for Colin?” she said, “and Colin thought the same, because when we went to the Beacon Centre to meet the team, he said to me are you checking me in? And I said no, I'm not checking you in anywhere! But when we spoke to Bev, one of the nurses there, our perceptions changed. She explained that the Living Well service was about helping Colin to live everyday life, and live it well, over the next however long he has, whatever that may be. Getting an early referral to Phyllis Tuckwell was massively important because it allowed us to see the care they offered in a different light. To find out that there was this Living Well programme that would nurture him and support him to do some practical things every week, and meet new people, was a relief. It’s enabled him to enjoy the time that he has without it looking like it's the end.”
“At that introductory meeting, we started to get a feel for what the Living Well service could provide for Colin. Bev was lovely. She got Colin a nice Diet Coke, and we went through where Colin was at and what was going on. She took some information, and asked him about his past and what he'd done before. Colin’s an ex-publican, so he told her all about that, and about how he and my mother had lived in France for quite a while. She was very interested and quite happy to chat to him. She then went through the two options that Colin could choose from - to come in and talk in a group every week, or to do something a bit more activity based and creative.”
Bev told Colin and Nicky about our two Living Well programmes – Living Well with Illness and the Creative programme. Both offer a two-hour weekly session over eight weeks, at our Beacon Centre in Guildford. At the start of each session, patients can get a cup of tea and talk to the nursing team there about any problems or issues which they might be experiencing. They can arrange to see other specialists, such as occupational therapists or counsellors, and can chat to and get to know the other patients there. Following this is a two-hour session which each week focusses on a different aspect of living with an advanced or terminal illness. Sessions in the Living Well with Illness programme cover topics including managing stress, getting a good night’s sleep, and food and nutrition, while the Creative programme offers activities such as therapy through nature, moments in bottle, and mindfulness with clay. The groups provide patients with helpful information, advice and guidance, and taking part in the activities can reduce stress and anxiety, and improve wellbeing.
“Colin chose the creative sessions,” said Nicky. “The talking sessions wouldn't have worked for him. He's always been practical, hands on, he likes doing stuff. He was a chef, then a publican and then he had a restaurant in France with my mum. He's lived a lot of lives!”
Sometimes patients have difficulty getting to our Living Well sessions, because they often don’t drive due to their illness, and their family and friends aren’t always available to take them to the sessions each week. We have a team of volunteer drivers who kindly give up their time to collect patients from home and take them to the sessions, then drop them home again afterwards. For families like Colin’s, this service is really important.
“I work full time and so does my husband,” said Nicky. “Without the volunteer drivers, Colin wouldn't be able to get to Phyllis Tuckwell at all, so the service is massively important to us. They're really good. I get a call the day before to confirm the transport, and then usually the driver calls as well, to say my name's John, or Hugh, and I'll be picking Colin up. So then I phone Colin to remind him. The first couple of weeks he kept forgetting, but now he knows that he goes there every Wednesday. The routine works well for him, especially with his illness. I feel guilty, not being able to spend as much time with him as I’d like to, because I'm working and I also have a young daughter. I’m trying to balance family life with making sure that Colin's OK and as healthy as he can be, and that he’s getting out, because being stuck indoors all the time is not good for him mentally. Knowing that he's going to Phyllis Tuckwell, that he's got a good few hours there, he's got a friendly face to greet him, he's going to do something that gets his mind working, and they'll make sure he's OK, is a real lifeline. It’s not only the fact that he's getting out, it's also the reassurance that he's seeing a nursing team who will be able to monitor him, and if they see something, it's picked up.”
Colin has been to our moments in a bottle session, where patients bring in photographs of significant or happy memories, and stick them onto an outline drawing of a bottle, to remind them of these times from their past. He also made stuffed peppers and chocolate ginger at our confidence through cooking session, and a planter in our therapy through nature session. He took the planter home, and it now sits on the table in his living room. “There are cactuses, some pebbles, little shells,” said Nicky. “One of the plants has purple flowers on it, and there’s a new one that’s just coming up, too. He brings all sorts of things back home; it's really nice for him to do some new things and it gives us something to talk to him about. Being able to go to these sessions, and to have that freedom of meeting other people and taking part in activities, but not having to be guided by a family member or a friend, gives him some independence back.”
Another of our creative sessions is called tracks of your years. Patients are invited to pick a song that means something to them, and listen to it with the group. If they would like to, they can tell the group what memories it brings back and why it is important to them. Colin chose the song Danny Boy.
"It was sung to me in hospital when I had appendicitis,” he said. “The nurse was called Nurse Murray. She sung it to me to get me to sleep. I was 11.”
"The interesting thing is that I always knew Danny Boy was Colin’s favourite song, but I never knew why,” said Nicky. “I never knew he had his appendix out. He's never mentioned that in my entire life. And that therapy session helped that story to come out.”
When Colin arrived home after the session, he phoned our Living Well team to tell them that today was the best day he has had.
We have also helped Colin to complete 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.
“The other thing they’ve done, which from my perspective was quite a difficult one, was the ReSPECT form,” said Nicky. “They helped Colin to complete that without me having to be involved, because it's quite a difficult form for somebody close to him to have to go through. Having that practical stuff taken care of is really beneficial.”
As well as caring for patients, our Living Well team also supports their families and carers, too. Colin and Nicky have both been to one of our pamper days, where our complementary therapists and volunteers offer a range of treatments, including foot, hand or back and shoulder massages, reflexology, manicures, pedicures and haircuts. Taking time out for self-care can help ease stress and anxiety, and boost confidence and self-esteem.
"Colin had a back and shoulder massage, and I had a nice pedicure,” said Nicky. “It was lovely. We had lunch there and met some other people as well; it was really nice to be part of it. I just feel like there's finally some support for us. The initial referral to Phyllis Tuckwell was done because Colin wasn't on any treatment plan, he didn't have any kind of medical support. We were just floating around thinking what should we do? where should we go? That referral has anchored our support network to Phyllis Tuckwell and they're now our first port of call. They know Colin, they understand his situation, they're monitoring him, and having that support has been hugely beneficial. I can't portray enough how valuable it has been, from the volunteer transport, to the medical support, to the caring side, to being the happy smiley face when he arrives, that connection has been amazing. Without Phyllis Tuckwell, we would still be floating around thinking there was nothing that could be done for him.”
“Colin gets a lot out of the sessions, going every week, but from a carers’ perspective, we get a lot out of it too. It’s really good to know that he’s enjoying being there every week, seeing other people, having a cup of coffee, chatting, making gardens, creating things, and just having something to look forward to every week. They always look out for him. When he missed a session because he forgot, they called me to check that he was ok. And then the next week he went, they did that session with him, that he was supposed to do the week before, so he didn't miss out on it. The longer term - you don't even think about that. It's the short term that you focus on. They just refer to the here and now; enjoy today, enjoy tomorrow, come back next week. And I think that's the benefit of having the early referral, you have a different outlook on what Phyllis Tuckwell is providing. I can't thank them enough. They've done an amazing job of supporting us as carers and supporting Colin as a person.”
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