"Phyllis Tuckwell have changed my life completely,” said Fred, who has lung disease. “Last November I went through a bad patch with my chest. I could not see the light at the end of the tunnel. I wouldn’t eat or drink; all I wanted to do was sleep. My doctor got onto Phyllis Tuckwell and Gerard came out to see me.”
Gerard is one of our chaplains, who are part of our Pastoral Care team. The team is there to listen to and talk with patients and carers about anything which is important to them. They offer emotional, social and spiritual support, no matter what each person’s spiritual beliefs are. This can include supporting people as they explore their sense of meaning and purpose in life, evaluate their self-worth, or explore how to express themselves. It can also simply mean being a sensitive listener.
Gerard listened as Fred told him how he was feeling, and helped him to see that we could offer him support and care which could help improve things for him. He suggested that Fred start coming to our Living Well sessions, which help patients to manage their symptoms and cope with living everyday life with their illness. The Living Well team also supports patients' carers, with practical advice and emotional understanding.
"He’s a good bloke Gerard, he’s nice,” said Fred. “Since I’ve been going to that class, they’ve opened me up a lot. I used to be shy; I wouldn’t say a thing. When I first started down there, I wouldn’t open my mouth at all. I would not speak, I just sat there listening, but now I’m beginning to open up. Every time I went, I would want my wife Ann to come with me, because I couldn’t break away from her. Now I don’t mind going by myself. I've been going ever since. They’ve been really good, fantastic. I’ve made friends there and I speak to them as well.”
“At first, he would rely on me to do all the talking,” said Ann. "He looked to me for guidance, but now he’s coming out of his shell. They’ve changed both our lives; they’ve brought a new lease of life to Fred.”
Fred has attended our two eight-week programmes - Living Well with Illness and the Creative programme. These programmes offer a two-hour session once a week, at our Beacon Centre in Guildford. There, patients can find peer support and friendship through meeting others in a similar situation to themselves. 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 topic, such as food and nutrition, or managing your mood, or a creative session such as therapy through nature, positive moments in bottle, or mindfulness with clay.
“At the Living Well sessions, they do different things each week,” said Ann. “Fred had a memory bottle one, where he had to take some pictures in, and now he’s on the art one.”
At our Moments in a Bottle session - one of the sessions in our Creative programme - we ask patients to recall positive memories, which we help them to record in words and pictures, so that they can create a visual record of them which they can look back on when they are feeling down or are going through a challenging time. Fred has also been to our Therapy through Nature session, which he really enjoyed. At these tabletop gardening sessions, patients are invited to create a flower basket or planter, for example, using the pots, soil, plants and flowers that are provided. At the session Fred attended, the patients each arranged a jar of cut flowers to take home with them.
“It was at the Beacon Centre,” said Ann. "You pick your own flowers from a range that they have there, and he did the jar.”
“It was lovely,” said Fred. “It’s the first time I’ve ever done flower decorations. I can’t do much. I can’t go out in the garden. I like doing my gardening, but I get out of breath. That’s why I’ve got this oxygen tank. Ann’s been really patient, waiting on me hand and foot. I wish I could do a bit more around the house to help her, but after a few minutes I have to sit down and fight for my breath. I get upset about it. I feel guilty, because she's doing all the walking with our dog, Max. He's a rescue dog from Romania. I’m an animal lover; animals have the same feelings as us, that’s how I look at it. Max loves Ann; everywhere she goes, he follows. We used to share walking him, but now I just can’t do it.”
To help Fred, we invited him to join our four-week Breathlessness programme, which is run by our physiotherapists and teaches gentle exercises and breathing techniques.
“The breathing sessions have helped me a lot,” said Fred. “If I’m in a panic, I breathe too fast, so they showed me how to breathe properly. They showed me how to use my inhalers properly, too."
Fred has also been visited at home by our occupational therapists, who help patients to manage their symptoms and continue living their everyday life as fully and independently as possible. This includes enabling them to participate in meaningful activities which are important to them, such as going for a walk or helping around the house. Our occupational therapists suggested some breathing techniques and provided equipment to help Fred manage his breathlessness.
“They said to use the oxygen tank when he’s moving about,” said Ann, “and when he’s in the kitchen he’s got a perching stool which he sits on and does the washing up. They told him to pace himself and just take his time. He fell out of bed, so they came out and put in something to slot in under the bed to stop him falling out; they were very good about that. They also gave us a list of different places where we could go to look at getting a mobility scooter. They’ve been very good on advising different things.”
"I don’t like sitting around,” said Fred. “I like to be on the go all the time. I’m pleased I’ve got my mobility scooter. They’ve changed my life completely, since last November. All the classes I’ve been to, I’ve found interesting. I’ve learnt quite a lot. I know it’s getting me out of the house as well."
"They’ve been outstanding,” said Ann. “He gets picked up and driven there and back by one of Phyllis Tuckwell’s volunteer drivers, and he has a good chat with them. And I’ve had support too, as his carer. We started with video calls with the carers, all on a Zoom call, and we talked about anything really, about our partners and husbands and wives. It’s been very helpful. Now we meet at the Beacon Centre every second Thursday of the month, and we have a Whatsapp group too, so we can keep in touch. If one of us is having a bad day, then we’ll all try and support them and vice versa.”
Ann has enjoyed being part of our online carers’ group and has found the support that we offer carers reassuring.
“They’ve helped me a lot,” she said. “I felt isolated before, but I feel better now I know they’re only a phone call away. It eases the pressure off me. They know how to manage Fred’s health, and my wellbeing as well. They’ve talked to us about things and left us some leaflets, because it’s hard to take in so much information at once, so we can refer to the leaflets to refresh our memories, which is a good thing. I have picked up the phone to them at times, and they’ve calmed me down and sent someone out to see me. We’ve had a talk and they’ve put my mind at ease. I suffer with anxiety and depression, so I find it really helpful. I had some counselling with them too, and that was very good. I don’t know what we’d do without them; they’ve been marvellous. I know if I need anything I can phone them, which gives me peace of mind.”
She and Fred have also had massages from our complementary therapists, and Ann has been to one of our carers’ pamper days. Organised by our Living Well team, these pamper days offer a range of treatments to help ease carers’ stress and anxiety, boost confidence and self-esteem, and encourage peer support. They include manicures, pedicures, makeovers and complementary therapies such as massages, from our complementary therapists, and hair care from our volunteer hairdresser.
"At the Living Well sessions we had pamper days, that was good. I had my feet massaged, and I’m looking forward to the next one where I’ll have my hands and shoulders done. It was wonderful; I felt like I was on cloud nine. They’ve been brilliant. You get a cup of tea and a biscuit too.”
“I’m really happy there,” said Fred. “All the staff are nice and gentle and kind. I enjoy going to the classes, every week I'm happy to go; I’m always happy going and I’m always happy coming back. I’ve got my wife Ann, and I’ve got Max, so I’ve got something to live for.”
