Ian, who has Motor Neurone Disease (MND), is cared for by our Living Well team at the Beacon Centre in Guildford, where he attends outpatient appointments, group sessions and pamper days.
“Last year I really wasn’t a well man at all,” he said. “I got pneumonia and had to go into hospital. The team at Phyllis Tuckwell kept in touch with me, and when I recovered they asked if I would like to go up to the Beacon Centre, and of course I would have loved to have gone up, but I just didn’t have the energy or the motivation. I’d lost a lot of confidence. Lyn, the MND specialist there, and various other people kept encouraging me to come up, so then one day I just thought heck – especially when your family’s busy and you’re saying you’d like to go and do this and they’re saying they’re busy and can’t go and do it right now – I thought: right I’ve got to go back to being independent and doing it myself. So I decided to go up to the Beacon Centre. My wife Cyndi came with me the first day, because although I knew roughly where it was, she being a retired midwife had worked at the hospital and knew the site inside out, so she took me up and showed me the door.”
Ian lives near the Beacon Centre and is able to travel there himself using his power wheelchair.
“Gradually over time I’ve gone from a situation where I was walking, then I had a limp, then foot drop, and then I couldn’t stand up, I hadn’t got the strength because my muscles were compromised. My hands had less control too. I used to be on the scooter, but I reached a point where I was concerned about my balance and holding on. I had to wait for the wheelchair, but since I’ve got it I feel like I’ve been reborn, because it’s just like sitting in a car and you can drive where you like. I’ve got to know everyone at the Beacon Centre so well. It means getting away from your own four walls. It just makes a difference in the day, and of course you get out in the fresh air. I’m not ever deterred by the weather; so far there hasn’t been a day I’ve let it defeat me. Cyndi bought me a waterproof and I’ve got this poncho too. It’s a nice little trip.”
Ian’s main contact at Phyllis Tuckwell is Lyn, our MND clinical specialist, who is an MND practitioner for Guildford and Waverley. Because MND is a complex disease, many healthcare professionals can be involved in a patient’s care. Lyn acts as a single point of contact for these patients, to both the team at Phyllis Tuckwell and also the wider team who support them in the community, such as speech and language therapists, dietitians, respiratory care teams, and MNDA care centres.
“Lyn’s my main point of contact and she’s been great. I have all sorts of issues, so I have a lot of people coming to see me. Lyn’s in touch all the time and is constantly monitoring how things are going for me. She’s very knowledgeable and she’s always picking up on things.”
At the moment, one of the problems I have is going in and out of the house. It’s fine when people are here, but then Cyndi might want to go off with our daughter Cíara somewhere, and we have to make arrangements so I don’t come back to find myself locked out. I do carry a key in my pocket, but I would have to ask some passing stranger to let me in. So we were thinking of something electronic, and Lyn has investigated all that, and we’ve found a company that’ll come and fit the door at the front with an electronic opening and closing system. It’ll be great because I can come to the door and have some little thing on the wheelchair here and just press a button, and I’ll be the only one who can use that, everyone else will have to use a key. Lyn seems to be able to do everything in an effortless way. She knows her job inside out. She takes it all in her stride and she can do anything.”
Lyn worked with the Guildford Adult Social Care team and the Motor Neurone Disease Association to research options for door-opening systems for Ian. Together they found this electronic system and are arranging for it to be part-funded and installed for him. Our clinical teams work closely with other healthcare providers in many ways, to share knowledge and ensure that we provide the best care we can for our patients.
Ian has been attending our Living Well group sessions at the Beacon Centre, and has completed both the Living Well with Illness and the Creative group programmes. These sessions offer patients information and activities to help them understand and manage their symptoms. They can talk to our doctors, nursing team and therapists, and find friendship and support from the other patients there.
“The Beacon Centre itself is a lovely place. I had heard of it but I didn’t know exactly what it was. I’ve done all the sessions and I think it’s important to do them, they’re very relevant, but the sessions I like the best are the ones you can have the most fun in.”
Our Creative programme includes sessions on mindfulness with clay, aromatherapy, and therapy through nature. Although Ian is unable to use his hands, he is still able to take part in the sessions with the help of one of our nursing team or volunteers.
“I can’t use my hands anymore, but I still manage to be creative. I usually find a nurse or somebody who is a willing victim, and I have certain ideas and they’ll do it for me. I’ve done a couple of things with this modelling clay and they’re absolute masterpieces! I had this one nurse, she was a trainee, and she did this modelling piece with me. I think she surprised herself at how good she was at it, she said it was something she could take up as a hobby herself!”
Ian has also attended one of our pamper days, where we offer patients massages and nail care from our complementary therapy team, and haircuts from our volunteer hairdresser. The day also includes a buffet lunch which patients can enjoy together, chatting and getting to know each other. It’s important to remember the mental and emotional impact that living with an advanced or terminal illness can have on a person, and these pamper days help to ease patients’ stress and anxiety, boost confidence and self-esteem, and encourage peer support.
“You get pampered at these days, you get foot or hand massages, and there’s all different age groups there. From time to time somebody gets a bit overwhelmed by the whole thing and they get upset, but the staff are very discreet and handle the person’s anxiety and emotion in a very professional manner.”
As well as receiving massages at our pamper days, Ian has also been visited at home by one of our complementary therapists.
“Vanessa came and gave me some back massages and a foot massage. She had all the oils, which smelt lovely. The one place I do have reasonable power is my arms. I have an electric hoist, and when it lifts me it’s a combination of pulling and lifting at the same time, and you’re using your elbows to really lift you, so it puts a lot of pressure on the muscles at the back of your neck. That’s why it’s great to get a massage, because it loosens up all the muscles.”
Ian’s grandson has also been up to the Beacon Centre, to see where his grandad is being cared for.
“My little grandson Oisin has been up there a couple of times, and they never want to let him go. He’s chatting to all the nurses and everybody, and telling them what to do! The people up there, they’re so caring. They must have gone out to the highways and the byways to handpick them all. They’re just like an extension of your family. They’re very kind people; I couldn’t speak highly enough of them. I’m so lucky to have it so close to me. It’s a wonderful organisation to have.”