"Before I went there, I hadn’t really heard of Phyllis Tuckwell,” said Colin, who was referred to our care in 2022, after a Covid infection left him struggling for breath.
“Having avoided Covid for two years, we both got it in 2022 and were very ill,” said Lynn, his wife. “I was ill for about three weeks, but Colin carried on going downhill and didn’t get any better. He became totally breathless and actually developed heart failure, although we didn’t know that’s what it was at the time.”
Colin was referred to our Living Well service, which helps patients to manage their symptoms and cope with living everyday life with their illness. It also supports their carers too, with practical advice and emotional understanding.
“I thought, it’s a hospice - once you get in there, you’re not coming out!” said Colin. “But I didn’t realise that their courses are completely different; it’s to improve your life, which they have, dramatically.”
“Our lovely community cardiac nurse explained that Phylis Tuckwell’s Living Well programme was all about life and getting the best out of every single day,” said Lynn. She explained to Colin and Lynn that although many people think a hospice just offers care in the last days of a person’s life, the Living Well service actually supports patients much earlier in their diagnosis. Through individual and group sessions, appointments with doctors, nurses and therapists, and the peer support of others attending the programmes, it helps patients and their carers to maintain their independence, live life to the full and make the most of every day.
“We jumped at the chance,” said Lynn, “and were very quickly referred. We got a phone call from the team within a few days, to say come along to a coffee morning, and we went along and met Rachel and Bev and some of the others.”
Rachel, our Living Well sister, and Bev, one of our Living Well nurses, welcomed Colin and Lynn, and made them feel at home. During the coffee morning, Rachel took some time out with Colin and Lynn, to assess Colin’s care needs and see how they were both managing with his illness.
“Rachel asked Colin lots of questions and assessed what his physical needs would be,” said Lynn. “Straight away she referred him onto the Breathlessness programme, and he very quickly started that, and it was just amazing. As a carer, I was allowed to sit in at the back, which I found really helpful. They taught us how to concentrate on breathing out, and to make that as long as possible to get rid of all the stale air, so that there was room, because you automatically breathe in, you can’t stop yourself, and then there was somewhere for the oxygen to go. That made a tremendous difference. They taught us deep breathing as well, breathing in through your nose, and lots of other things. It’s not only helped Colin; I use it a lot when I’m stressed too. And relaxation techniques, so good that they put Colin to sleep at one point!”
Our four-week Breathlessness programme is run by our physiotherapists, and teaches gentle exercises and breathing techniques. In the sessions, patients and carers also learn relaxation techniques and psychological strategies to help them manage feelings of stress and anxiety. Patients are talked through a guided relaxation which they can use in the future to help them to relax.
"I fell asleep!” said Colin. "I don’t believe in it, but it happened!”
Our physiotherapy team also gave Colin a walker to use, to help him keep mobile.
As well as attending our Breathlessness sessions, Colin has also taken part in our two eight-week programmes - Living Well with Illness and the Creative programme. These offer a two-hour session once a week, which is held at our Beacon Centre in Guildford. There, patients can meet others who are in a similar situation and find peer support and friendship. Each session starts with an informal half hour where patients can get a cup of tea and talk to the nurses there about any problems or issues which they might be experiencing. They can arrange to see other specialists too, such as occupational therapists or counsellors, or can just spend some time chatting to and getting to know the other patients there. A two-hour session follows, which each week focusses on a different topic, such as improving your sleep, managing fatigue or remaining active, or a creative session such as mindfulness with clay, aromatherapy or confidence through cooking. We offer Adapted Tai Chi sessions too, which help improve balance and mobility, and calm the mind.
“Colin was a bit sceptical about the Tai Chi,” said Lynn, “but he found it did make him a lot stronger. Even the creative programme I had to persuade him to go on, but he enjoyed it and he made me a Christmas present - a miniature garden - and a Christmas pudding. He made some good friends in that group, too.”
“The Tai Chi was gentle exercise but by golly you knew you’d done it!” said Colin. “It loosened up the body and exercised muscles that you normally don’t use.”
"He’s doing an exercise programme too, which is run by the physiotherapists,” said Lynn. “He’s managing to walk better; he walked back down from the shed earlier today and forgot his walking stick, even two months ago he couldn’t have done that.”
“When I first went over there, we didn’t think I was going to last the summer, I was that bad,” said Colin.
"He couldn’t walk to the kitchen without his walker,” said Lynn. “He was having to use it for very short distances, and if we had to go to the hospital, we had to use a wheelchair. The Living Well service has made a tremendous difference. They’ve got him back to everyday living and getting out, because he didn’t want to go out, and he didn’t like people coming round either, even family. He withdrew from them, and all of that’s changed now.”
As well as caring for Colin and Lynn through sessions and appointments at the Beacon Centre, our Living Well team have also visited them at home, to see whether they need any support around the house.
"An occupational therapist came out to see us,” said Lynn. “She listened to us and asked us about Colin’s needs, and arranged for handrails to be put up on the stairs. She also gave us a perching stool for Colin to take out to his workshop in the garden. He couldn’t actually get out there at the time, as he couldn’t walk that far, but it was good because it gave him something to work towards, and now he can do it.”
Our occupational therapists 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, roles and routines which are important to them, such as helping Colin to spend time in his workshop in the garden.
Colin and Lynn have also had massages from our complementary therapists, and Colin has been given some soothing cream with aromatherapy oils mixed into it, to help with his itchy skin.
"Colin was scratching himself raw, particularly at night in his sleep, because one of the medications he was taking was making him itch so much. The complementary therapists made him up a special cream, which we still get from them, which we can rub in and it's amazing! Not only does it work extremely well, but it also smells wonderful, and it's cleared everything up.”
The team has also kept in touch with Colin’s cardiac nurse, to make sure she is aware of any medication or treatment that he is receiving from Phyllis Tuckwell. We work closely with our NHS colleagues to make sure that the care we give is joined-up and that everyone involved knows what the others are doing.
"My cardiac nurse knew exactly what was happening,” Colin said. “She would say ‘I’ve heard from Phyllis Tuckwell’. It was great – they're different organisations, the NHS and Phyllis Tuckwell, but they liaised with each other.”
Colin and Lynn have felt welcomed and supported by our Living Well service, and really feel that it has made a big difference to their lives.
“They make you feel that you’re a normal person,” said Colin.
"And the volunteers who come along and chat, and make coffee and cakes,” said Lynn. “Everybody’s so lovely, the receptionists, they all welcome you, they know you by name. And they don’t talk over you. They don’t talk to me about Colin, they talk to Colin. And they talk to me about being a carer. Everybody’s always so cheerful, too. And you can phone at any time and there’s always somebody at the end of the phone.”
“I've got almost as much out of it as Colin has and I'm in a much better place now, which means I can support him better and our life together is better. It’s made a real difference, particularly the online course. Every session was so full of really good practical advice and detailed information about where you could get additional support should you need it. They were supporting the emotional side too, allowing people to talk if they wanted to, because some people were very emotional. It definitely does you good to talk about how you’re feeling and to share it with people who understand that, yes, you will feel slightly resentful because everything’s changed for you too, just as your loved one feels resentful that everything’s changed for them. What I did wrong in the beginning, before we had any support, was to try to do everything myself. I had to give up all the things that I enjoyed, and I was struggling to stay on top of the beekeeping and the washing and the housework and everything. I didn’t ask for any help. It doesn’t do you any good; you start to feel that you’re a martyr and that your life’s gone. Back then I’m sure that there were things that Colin could have done for himself, but when you love someone you want to make life easier for them, so you tend to do too much for them. I was doing things for Colin that he could probably have managed on his own, but would just taken longer over. Now I just let him get on with it. In fact, sometimes I have to insist that he gets on with it! And now he’s back to doing lots of things that he wasn’t doing before - he's driving again, he makes his own breakfast, and he makes the bee frames, none of that happened last year.”
Colin and Lynn are beekeepers and have hives in their garden as well as in several other local locations.
“It was Colin's fault we got into bees!” said Lynn. “We used to be canoeists, but it got too difficult.”
“We had bee hotels all over the garden,” said Colin, “so we decided that we’d like to do bee keeping - but it isn’t just a matter of going and buying bees, you have to be trained. So, we went on a course and then we got the bees, and it went on from there. We became part of a local bee keeping club, and we used to go to the Rural Life Centre at Tilford to talk to people about bees and hold displays there. But I haven’t done anything recently because I’ve been so poorly. Lynn’s been managing all of the bee keeping.”
Since attending our Living Well sessions and regaining some of his strength, independence and confidence, Colin has been able to start making the frames for their beehives again, which he used to do before he became ill.
"You can buy the frames, or you can buy the parts and put them together, which is a lot cheaper,” he said. “They’re for the honey. You put sheets of beeswax into the frames, and then the bees can carry on and draw it out and make honeycomb.”
As Colin begins to feel able to return to some of the hobbies and activities that he enjoyed before he became ill, our Living Well team has also supported Lynn to return to doing the things that she loved.
"I’m doing all sorts of things again that I wasn’t before,” she said, “like Park Run on a Saturday morning, and helping out with Junior Park Run on a Sunday morning. We do it as a family, with our son, daughter-in-law and grandsons. It gives us our family life back again and although Colin doesn’t come along, they often come back to see him at home afterwards. That’s what we’ve got from Phyllis Tuckwell - everything’s so positive. It’s all about getting the most out of every day; thinking about the future and what you can get from it. It’s about helping you to be as independent as you can be. And it’s the emotional side of things too, which is half the battle, isn’t it. We look forward to going to Phyllis Tuckwell – both of us.”
