Jennie’s story

“Every single person who goes there is going to find something there that will make them feel happier. I get quite depressed with this illness, but when you walk into that room, it is just so lovely. I cannot say how much they changed my life in those ten weeks.”

Jennie, who has MS, was referred to Phyllis Tuckwell’s Living Well service in May 2019. She wanted to share her experience:

Although she had heard of Phyllis Tuckwell before, she thought our services were just for people with cancer. However, when she found out that we also support people with other conditions, such as MS, she was keen to come along.

“When Phyllis Tuckwell first contacted me, they asked if I’d like to start going to their Day Hospice sessions, which are part of their Living Well service,” says Jennie. “They said I could go every Tuesday, and that it would be for ten weeks. I wasn’t sure what I was going to find there, but I said ‘yeah, I’d love to give it a go’, and my goodness what a fantastic decision that was! It is the most happy, get-rid-of-all-your-problems-off-your-shoulders place! I loved it.”

Jennie started coming to our Day Hospice sessions every Tuesday. These weekly sessions are held from 10am to 3pm at the Hospice, and enable patients to receive medical and nursing care, access occupational therapy and physiotherapy advice, enjoy complementary therapy treatments, and socialise with others who are in a similar situation. Patients are offered a range of refreshments throughout the day and eat lunch together, which is an important social element for those who may not have much company during the week.

“Every Tuesday I used to wake up and think ‘oh good, it’s Tuesday! I’m going to Phyllis’s!” says Jennie. “Because I can’t drive, or even walk, they’d send a volunteer to pick me up in their transport, and drive me to the Hospice. The drivers were so funny, I’d have a good laugh with them on the way there.”

“I’ve had MS for 40 years now, and I’ve gone from going to the gym six days a week to now not being able to get out of my chair or bed. At Phyllis Tuckwell they offer you so much support. I was feeling really down when I first went there, almost suicidal, and they helped me a lot. I talked to a counsellor – that helped me loads. I found that very supportive. She actually came round to see me at my house, and it’s nice when you can talk to somebody in your own home, you feel more comfortable.”

“I’ve also seen a Physiotherapist and an Occupational Therapist,” says Jennie. “The Physio, Alison, was brilliant! A lot of people, when they see you, they think ‘oh disabled’ but not in there, they don’t make you feel disabled, or like you’re awkward or a nuisance. They encourage you to do as much as you can. I used to go to Day Hospice in a wheelchair, but I’ve also got a four-wheeled walker, and Alison used to encourage me to try to walk with that. She’d say ‘Go on Jennie, just try,’ so I’d go a little way, and then she’d say ‘do you think you can get to the dining table?’, and when you got there everyone would clap and say ‘well done!’ They encourage you to walk as much as you can. Then they sit you at the table and they ask ‘is this ok?’, ‘can I cut your food up?’, ‘is this food okay – is it soft enough for you?’ And every single thing that you really need help with they’ve already thought of. They don’t treat you like you’ve lost the plot or lost your marbles. My illness has progressed since then though, and I can’t walk at all now. Tori, the Occupational Therapist – who is absolutely brilliant – comes round to see me at home and asks me if I need any extra equipment to help me manage things. You’ve only got to ask and they say ‘oh yes we could help you with that’ and before you know it you’re on the list. I don’t know whether it’s the words ‘Phyllis Tuckwell’, but as soon as people hear it, things get done quite quickly.”

“At Day Hospice, the Complementary Therapists would come round and ask if you’d like a hand massage. They’d do your hands and up your arms, and the same with your feet. After I had my toes massaged I could actually move them on my own, which I can’t normally do. And they’d give you a facial massage too. I had my nails done as well, and that made me feel better. It’s those little things that make a difference. One day there were so many different things that I wanted, I couldn’t fit them all in! It’s absolutely incredible, the services you get there.”

“Because I live on my own, I eat on my own, which I absolutely hate,” continues Jennie, “but at Phyllis Tuckwell you have lunch together with the other patients. You can have a drink of wine too, if you like. While I was there I got friendly with a couple of other patients, and one of them phoned me up before Christmas and asked if I’d like to meet up for a coffee, so we decided we’d go to Marks & Spencer at the Meadows and have a drink, so that was another thing that I wouldn’t have done if it wasn’t for Phyllis Tuckwell.”

With our help, Jennie has been able to remain as independent as possible at home. As well as enabling patients to maintain their quality of life and supporting them to live life as fully as possible, we also talk to them about their future needs, and help them make decisions about the care that they would like to receive when their illness has progressed further.

“On one of my visits to the Hospice, one of the doctors said she wanted to talk through a few things with me,” says Jennie. “She asked me ‘have you thought where you’d like to die?’ so I said ‘what do you mean, do you mean die die?!’ I told her that I hadn’t thought about it, and she asked me if I’d like to die at home, in hospital, or there at the Hospice. I said I’d like to die at the Hospice. Knowing what the people at Phyllis Tuckwell are like, if that was going to be my end of life then it would be happier there than anywhere else I can think of. I really mean that. It’s such a lovely, caring place. Having carried this illness for such a long time, to actually go somewhere where people are so caring, it’s something else, I tell you.”

Whilst attending Day Hospice, Jennie took part in several of our other Living Well sessions. These individual and group sessions run over several weeks, both at the Beacon Centre in Guildford and the Hospice in Farnham, and include movement therapies, relaxation therapies, emotional therapies and creative therapies. Jennie came along to our Therapies through Nature group, which is led by one of our Occupational Therapists, Lisi. Lisi supports the group through the process of creating a horticultural arrangement, such as a bowl of pot pourri, a flower basket, a planter for the garden or a small pot of herbs. Patients are given a choice of plants to include and are able to choose where in the pot to plant them, and so can create a final version which is personal to them, which they can then take home with them, keeping it for themselves or giving it to a loved one.

“I did some flower arranging, which was really good,” says Jennie. “They give you the plants and you decide how you want to arrange them, and they give you a little pot to put them in, and at the end you can keep it, so I bought it home and put it on the hearth. You could also go out into the Hospice gardens and have a look round, and if you were in a wheelchair they’d push you around. These things all made you feel that you were coming out of yourself – they really did help.”

At Day Hospice, staff also organise reminiscence activities, introducing a topic and asking patients if they would like to share any memories they have with the rest of the group. Participation is entirely voluntary, and Jennie enjoyed these sessions greatly.

“One of the staff there, he used to say ‘today we’re going to have a chat about the 1960s – does everybody want to do that?’ And I thought ‘oh yes I’d like to do that’ – because I’m old enough to remember the 60s! And that was absolutely incredible – hearing from other people things that I didn’t even know from the 60s, because some of them were quite a bit older than me. I’d say, ‘cor did you really have to do that?’ ‘Oh yeah,’ they’d say. Each week he’d choose a different era and that was really interesting. It brought people out of themselves because everybody spoke.”

“I went to Day Hospice every Tuesday for ten weeks, and on the last week they told me that it was my final session. I didn’t want to believe it – I said ‘no it can’t possibly be, you must have got that wrong’, but they hadn’t, it had just gone so quickly. So I said ‘no, I want to come back!’  I have heard that I am on the list to go back again, but I appreciate there are so many other people who want to go there too. Every single person who goes there is going to find something there that will make them feel happier. I get quite depressed with this illness, but when you walk into that room, it is just so lovely. I cannot say how much they changed my life in those ten weeks.”

“To me, Phyllis Tuckwell means sharing your problems with other people, and having people to share those problems with. The Hospice is such a lovely, cheerful place. It takes all your worries away. I can’t wait to go back there again.”