When Caroline was diagnosed with motor neurone disease (MND), in May 2024, her MND specialist, Gina, referred her to our care.
“When Gina said I’d been referred to Phyllis Tuckwell, I thought, ‘well somebody is clearly not listening to what's going on, because I haven’t got cancer’. I had no idea that they cared for people with other illnesses,” said Caroline.
As well as caring for patients with cancer, we also care for those with other advanced or terminal illnesses, such as heart or lung disease, or neurological conditions such as motor neurone disease.
Caroline is 58 and has been living in a residential care home since August 2024. “I wasn’t really expecting to be here, at my age,” she said. “I had always been a sporty child. I had a pony called Sonnet; I was very outdoorsy. My childhood dream was to join the police, which I did when I was 21. I worked on the local beat in Farnham, then in Guildford on the response cars, spent 15 years in the traffic department, and then went onto investigations into domestic violence. When I left, at 51, I started a dog walking business and really enjoyed it. I had my own dog too, Freya; I joined the bowls club and played four or five days a week; I was quite content. But then one day, I went to the first bowls match of the season, and I couldn't bowl the ball halfway down the green. I didn’t know what the problem was, but over the following months I noticed my arms becoming more and more restricted in movement. I had a few falls when I was out walking the dogs, and then more falls at home. I saw doctors, a chiropractor, and eventually a consultant, who sent me for an MRI. I was referred to a neurologist who told me that I had MND. He put me in touch with Gina, who referred me to Phyllis Tuckwell.”
We work closely with other local healthcare providers, including MND specialists, GPs, district nurses, and clinical staff at hospitals, who can all refer patients to our care. We also support care home staff to provide palliative and end of life care to their residents.
“I thought it was a bit weird; I didn't realise the breadth of what Phyllis Tuckwell covered, and the involvement they’d have with me. I was still living in my bungalow at that point; I didn’t move into the care home until the summer. I was visited by Sarah, one of Phyllis Tuckwell’s occupational therapists, who referred me to wheelchair services for a wheelchair, and technical services, to see if they could adapt my mobile phone, as by that stage I couldn’t hold or use it at all. Dr Sarah, one of their doctors, also came to see me. She must have spent two hours with me, going through some fairly difficult subjects, but essentially explaining to me what Phyllis Tuckwell was able to do for me to make my MND journey more comfortable.”
Our team of doctors, nurses, health care assistants, occupational therapists, physiotherapists, complementary therapists, patient & family advisors and counsellors care for patients on our In-Patient Unit, at our Living Well sessions, and in patients’ own homes and care homes. They support patients to manage their symptoms, provide equipment to help them remain independent, teach them techniques to help manage their breathing and anxiety, and give advice, guidance and signposting to places where patients can find even more support.
“I moved into the care home in the August; I just couldn’t manage at home anymore. It’s lovely and the staff are fabulous. Shortly after I arrived, I was contacted by Rachel, from the Living Well team at Phyllis Tuckwell. I knew about the Hospice, because my uncle was there a number of years ago and we'd visited him, but I’d never heard of Living Well.”
Our Living Well service supports patients earlier in their illness, helping them to manage living everyday life as fully and independently as possible. The team run two eight-week programmes – Living Well with Illness and the Creative programme. These two-hour sessions offer patients information on topics such as nutrition, mood, sleep and exercise, and activities including Confidence through Cooking, Therapy through Nature, and Mindfulness with Clay. Sessions are held at our Beacon Centre in Guildford, and we are often able to offer volunteer transport to those who aren’t able to get there themselves.
“Rachel invited me to the Beacon Centre, which I didn't know even existed. She said that I would be coming to their Living Well programme. It would be a couple of hours a week, and that they would sort out all my transport there and back. I said ‘that’s very kind, how much is that?’ But she said ‘it’s free’.”
All of our care is given to our patients and their relatives and carers free of charge, but as the funding that we receive from the NHS/Government only covers around 25% of our costs, we have to raise over £25,000 every day to do this. Much of this money is raised through our 18 charity shops, which sell donated, preloved items, and by our amazing supporters who make regular donations, take on sponsored marathons, skydives and abseils, organise cake sales, pub quizzes and music festivals, and come along to our many events throughout the year, to help raise money.
"I was a bit sceptical to start with, but I didn’t want to turn anything down; I thought I would just take every opportunity. Rachel set everything up for me. The driver was here on time, with an escort. They both had their name badges on, so I could see who they were, and they were absolutely brilliant. They got me and my wheelchair into the car with as much dignity as could be, strapped me in, were very chatty and polite throughout the journey, and when we arrived they wheeled me into the Beacon Centre, where there was a lady waiting for me. She said, ‘Hi I'm Jo, you must be Caroline, yes we’re expecting you’. She escorted me to the reception, where there was a vase of fresh flowers, and the receptionist stood up so I could see her over the top of the unit. The place was spotlessly clean. We went to the garden room, which was light, bright and airy, where I met Rachel and a couple of the rehabilitation assistants. Clare was the first one I spoke to. She said, ‘would you like cup of coffee and biscuit?’ and I said ‘yes please, but only if you're going to dunk it for me! I’ve got a little bit of trouble dunking these days because my arms don’t work.’”
“They asked me if I'd like to be transferred into a more comfortable chair and have my legs elevated. Well, these ladies stood me up, one each side of me and one behind me, and I've never felt so safe in my life. Bearing in mind my legs are wobbly and I can’t use my arms other than to just about use a walker. They turned me round, sat me down, and put my legs up. Clare sat with me and said, ‘here’s your coffee, and you say you want your biscuit dunked?’ I sat there and thought this is a bit weird because I kind of feel as if I should be here. I feel comfortable. The other patients came in and sat down, and it was all quite light-hearted, not really what I was expecting. You'd think things would be a bit glum, but it wasn’t, it was the complete reverse; the staff made it welcoming and comfortable.”
“Rachel sat with me and we filled in some paperwork. I can remember her saying a few things, and I just thought to myself, she's done her research. She knew more about my medical history than I did. It was as if they knew the journey that I was going to go on and what they needed to do to help me. They knew it before I even came through the door.”
“After we had finished the paperwork, Gerard, the chaplain came to have a chat with us. Again, my sceptical mind said that this wasn’t going to be my bag, and I'd better just sit quietly because I didn't want to offend anybody. He said we were going to do a little exercise going around saying what people's likes and dislikes are, hobbies, that sort of thing, and it was quite nice, actually. It broke the ice and let everybody get to know each other, because before that we'd been sat individually with staff doing the paperwork. He was a lovely guy. So, that was the first session. The drive home was as straightforward and dignified as it had been coming out, and when I got back I sat down and thought that was totally not what I expected. It felt as if I was being taken by the hand and led on the journey. And I found that I was quite looking forward to the next session.”
Gerard is part of our Pastoral Care team, who offer emotional, social and spiritual care to patients, relatives and carers who would like this support. Members of the team lead some of our Living Well sessions, and are also available if patients or their loved ones would like to speak to them individually. The team work closely with our counselling team, and when it is appropriate will signpost people on to this service, whilst maintaining their pastoral support.
“The following week there were different volunteers, but the same quality of service, the same chatter on the way over, the same welcome. Gerard was there and he asked if he could talk to me. He had remembered that I really liked horses and had brought in a photo of his grandfather with a big shire horse, which he had used to plough the fields back in the 1920s. The photo was lovely. He asked if he could put it on the table next to me during the session, and I thought, okay. Well, I couldn't take my eyes off this photograph. I was still talking and engaged in the session, but as soon as there was a break I was looking back at it, and every time I looked at it, I saw something different. I felt like he understood me exactly; that there was a connection. It was just such an unusual but lovely thing for somebody to do.”
“And so, we went through the programme. Each session was different, but it was basically about living with advanced or terminal health conditions - how to manage sleep, nutrition, exercise. The clinical psychologist did a session on stress management, which was really interesting. We also all had bit of a giggle at times; it’s nice to have a little bit of banter. At the end of the eight weeks, I was asked if I wanted to do the creative programme. I said no at first – that because of my MND I can't do anything, so somebody who can do it might as well have the space. But Clare said the whole point was to get me out of the care home, to have some social activity, and to improve my wellbeing. She said that I would have somebody with me and that I would tell them what I wanted to do, and that they would be my arms. So I said I'd love to. One week we made little garden planters, which I've got on the patio here; that was really good. We also painted little bird boxes, and there was one session called ‘positive moments in a bottle’ where we had to bring in photographs of our history. I brought in a couple of me when I was working, and a couple of my dog Freya. It was really enjoyable, really well managed, and a nice way to chat and relax. I didn't realise how much fun it would be watching somebody else paint a bird box for me!”
“When I finished that programme, Rachel invited me to their coffee afternoons, but it was a little bit difficult with transport. Phyllis Tuckwell can often provide transport to their Living Well programmes, but it's a little bit more difficult for them to do that for a social event like a coffee morning, as they don't always have enough volunteer drivers. I went over once with my own transport, and it was really nice. By then Phyllis Tuckwell had a hold of me and I was really looking forward to going back. Rachel also said that she had arranged for Angie, one of their complementary therapists to visit me every couple of weeks, to give my hands a massage, and also to make sure they didn't lose touch with me. Her visits are lovely. Right from knowing that she’s coming to the care home and I've not got to worry about transport, to having that 45 minutes that is completely me time. I can choose for her to massage my head, neck, arms, legs, hands or feet. It’s really gentle, and she uses essential oils and the smell is so relaxing. Having my muscles moved, which they aren't very often, is a really nice feeling. I've also had more visits from Dr Sarah, and the occupational therapist and physiotherapist have been over numerous times. Sarah, my occupational therapist, helped me to get my electric wheelchair. It's funded by the NHS, but she arranged it all. She’s also looking into getting me a rise and recline chair. And Sam, my physiotherapist, has been looking at neck braces or neck frames to support my head. I'm in touch with them all fairly regularly. I know that they're there, and I can contact them if I need to. I feel supported. And I'm going to see a Queen tribute band at the end of next month!”
Recently, following a patient discussion about going to see live music acts, our Living Well team have organised trips to see George Michael, Abba, and now Queen tribute acts, at the Princes Hall in Aldershot. Each patient has their own carer, whether that is their spouse, a family member or one of our staff, and pays for their own ticket; under the Essential Companion Scheme offered by Princes’ Hall, all of the carers are able to attend for free. Most of our patients aren’t able to access this sort of event normally; some only really leave the house to go to a medical appointment or come to one of our sessions, so being able to attend a social event like this is really important to them. It helps them put aside their illness for a short while, forget what else might be going on in their lives and enjoy something that isn’t related to being ill. They tell us that it makes them feel normal.
“I felt so welcomed at the Living Well sessions. The fact that Jo actually took the time to come out of her office and stand outside waiting for me as soon as she saw me coming. Everybody knew my name. The rehabilitation assistants, if they're not outside with Jo, will poke their heads out and say hi while I’m getting out of the vehicle, and then help me once the driver has pushed me through the doors. It’s clearly well managed; they work as a team and everybody respects each other. The most important thing is the welcome and the open arms; the understanding. MND is an unknown journey; each journey is individual, and it's changing, week on week. It affects everything, my arms, my legs, my breathing, my voice. At the Living Well sessions, I was in an environment where everybody knew what I needed before I did.”
