Maggie was diagnosed with motor neurone disease (MND) four years ago, and was referred to Phyllis Tuckwell by her MND nurse.
“I've been looked after by Phyllis Tuckwell since about August 2021,” she said. “They're absolutely fantastic. The occupational therapists are outstanding; the doctors are fantastic. Everything about them is just wonderful.”
Maggie is cared for by our Hospice at Home team, who visit patients in their own homes and care homes across West Surrey and North-East Hampshire. The team includes doctors, nurses, health care assistants, physiotherapists, occupational therapists, complementary therapists, patient and family advisors, counsellors and our Pastoral Care team. Some people prefer to be cared for at home, rather than travel to our Beacon Centre or In-Patient Unit, and our Hospice at Home team enables them to do this. Maggie has had ongoing support from Catherine, one of our occupational therapists, to help her remain independent as her mobility decreases.
“Catherine comes to see me at home, and that’s the nice thing. I don't have to make the effort to get in the car, which is always a trial. With MND, you get intense fatigue. It’s not just tiredness; it's absolutely overwhelming sometimes, so going out anywhere takes an awful lot of energy. And for my husband, Phil, too, he's got to get me dressed and up and out and into the van. Although I've got a mobility vehicle, it's so uncomfortable; you get shoved about all over the place. So the fact that Catherine actually comes out to me makes a big difference. It's really important.”
Maggie has a bedroom in the downstairs of her home, and Catherine has organised for a hoist to be installed in it, to help with Maggie’s mobility. She is also looking into ways to help Maggie move around in bed at night, as staying in one position can be uncomfortable and painful.
“I'm a very pragmatic person and I like to be prepared. I know what I've got, and I know how it's going to go, so everything that happens is expected. Catherine’s visits are great. She's trying her best to make me comfortable. I always seem to have a problem with something, my chair or my bed or something, and she goes above and beyond to try and sort it out. She’s got me a bath chair, a shower chair, cushions. Whatever the problem is, she tries to solve it - and she doesn't just stop with one idea. If that doesn't work, she carries on, she doesn't give up. She got me a hoist as well, to help me get into bed or into my chair. It helps Phil too, because I’m worried that he’ll hurt his back one of these days, trying to lift me and support me. They're just so good. If you need something, you get it. You don't have to wait weeks and weeks.”
Our complementary therapists have also visited Maggie at home, providing massages to help ease her muscles.
“I've had a leg massage, which was very nice, and right at the beginning I had a back massage. It's always very nice being massaged. For the first one I went to Phyllis Tuckwell, but the rest have all been here. Doctor Sarah phones me regularly as well. We’re trying out different things to help my muscle spasms. I'm not very good at taking tablets, they always seem to disagree with me, so she's trying to find the best alternatives.”
Maggie has also been visited by our dietitian, who has provided advice on how to increase her calorie intake and helped with getting a feeding tube fitted. The tube is operated by a pump and can provide Maggie with the extra nutrition and vitamins that she needs. It can also be used to keep her hydrated with fluids, and to administer medication.
“About a year ago I lost my appetite and started to lose weight. I've always been slim, but I lost over a stone and became underweight. I asked to have a feeding tube fitted, because I can't eat very much at the moment. I'm also using it a lot for water, as I'm not drinking that much either.”
Our specialist care and support extends to the families and carers of our patients too, who are offered pastoral care, counselling and complementary therapies, and can join our carers’ sessions, where they can meet others who are in a similar situation.
“I’ve got a son and daughter. My son's got a little girl who’s two, and my daughter's got two boys, Jack, who's nine, and Ryan who's just turned seven. They're smashing kids. My daughter lives up the road, just five minutes away, which is really nice. We've been offered counselling, but we haven't taken it up. We know it’s there if we want to, though.
Maggie feels reassured knowing that our team is here whenever she needs their support. “I know that I can pick up the phone, and every time I phone the office, everyone is so caring. They want to help. It gives me confidence, to know that there's someone to call. It's the same with my MND nurse - she's brilliant. And they work together. If I see one of them, the information I tell them is passed on to the others who care for me. It's very important. I don't have to keep repeating things; it's written down and everyone knows.”
We work closely with our colleagues in the NHS, including GPs, district nurses, MND specialists and hospital teams. Information about patients is shared confidentially between the teams, so that everyone involved in a patient’s care is kept up to date with the latest developments and patients don’t have to keep telling different teams the same information.
“I've got a fantastic team all around me,” said Maggie. “They're there for me. They've been brilliant.”
