"I think about tomorrow when I plant my garden"

Jake’s condition, Muscular Dystrophy, is a progressive muscle wasting disease. He was diagnosed at the age of 4, using a wheelchair by the age of 11, and by 13, Jake was receiving care from a Macmillan nurse, working out of Little Haven.

It was his J’s Hospice nurse, Bev, who proved to be a lifeline for Karen and Jake – not only managing to get specialist equipment installed at home, but connecting with Jake and getting him to open up to her in a way that he didn’t with other medical professionals.

“When she arrived, Bev looked at us and probably thought, ‘you are just not prepared for anything here.’ She took over – and she was right! She looked after his medication, managed everything. She was brilliant. And she stayed brilliant right to the end.”
 

Having experienced Jake’s care in a long list of hospitals around London and Essex, Karen firmly believes that gardens can play a huge role in a person’s mental and physical wellbeing – and why hospices get this so right with theirs:

“Jake went to big hospitals, with nowhere to get away from what’s going on. To have had a garden that you can look out on or just sit in for five minutes and take stock is so important. It would have made a real difference to our visits.”

Alongside their incredible contributions to health and nursing charities, the National Garden Scheme actively champions the power of gardens in healthcare. Their Community Garden Grants programme – which opens each year in September – provides vital funding to community projects, charities (including hospices), and therapeutic gardening groups to help them develop or expand their spaces. 

They also promote ‘Green Social Prescribing,’ which encourages activities such as gentle daily gardening, evening garden strolls, and focusing on natural sounds to relieve stress, anxiety, and sleep issues.
 

In recent years, a marked shift in hospice care provision for young people has taken place. Many hospices are now developing ‘transition’ pathways, recognising that young people need to make the difficult transition from children’s hospice care, into an adult hospice. Karen’s son, Jake, experienced one of the forerunners of this model of care. 

“Jake was cared for by J’s Hospice, which was set up by a woman whose son had Muscular Dystrophy, which is what Jake had. She felt that there was a gap between leaving Little Havens, who looked after children, and being a young man, and that an adult hospice isn't the right place, because of that ‘in-between’ time. So she set it up with that age group in mind. 

“They really believed in care in the home, which is what we wanted. The director of the hospice had one patient, which was Jake, he was her favourite, and she came out to see him. So it was absolutely perfect for us, you know, the right way of looking after him. It was a lovely thing, and she was marvellous.”
 

It was through Jake’s hospice nurse, Bev, that Karen found herself signing up to be part of an open gardens scheme in 2014 – despite her reservations that her garden wouldn’t be up to the required standard:

“She used to plan her visits to be her last one. And then she'd have a cup of tea, and we’d walk round the garden. We talked about the things that had to be talked about.

“And she'd always say, ‘you should open your garden for us.’ You don't ever think the garden's good enough. I kept saying no…but then eventually I agreed. In the first year, I did it just for the hospice. But I wanted to broaden out – there’s only so long you can ask your own friends and family to pay to see your garden!

“That’s when I decided to open for the National Garden Scheme – because they support all hospices.”
 

After her first successful open garden event in 2014, Karen says that she was compelled to do it the following year too. But just before Christmas of that year, Jake sadly died.

His death left Karen wondering whether she could carry on planning her National Garden Scheme open garden – but, explains, it turned out to be the best thing she could have done to help deal with her grief.

“It was going to be really hard to cancel it, so I just thought, ‘I'll do it.’ And that was the best thing I could have done, because it gave me a focus. I had to get outside every day and get the garden ready because all these people were hopefully going to turn up. 

"So looking back, had I cancelled it, I think that would have been a mistake. And to carry on with it was a really good thing for me. Once you're out in the garden, you just have to get on with it. 

“It fills your time with something really quite positive. You're looking forward all the time. You're sowing seeds, you're taking cuttings and planting things out and you're thinking about what that's going to be like. It’s that thing, isn't it, about thinking about tomorrow when you plant a garden?”
 

Initially, Karen didn’t know whether her garden would be accepted into the open gardens scheme – and describes how surprised she was when she sailed through the visit from her local County Organiser:

“I thought I'd ask them to come round, assess me, they can tell me all the things that are wrong with it and give me some advice and pointers, how to get ready for their next visit. 

“But they came round and to my surprise said that I was accepted. I wasn't expecting that! They did give me some advice, and I just went with it. 

“National Garden Scheme have got such a reach. People know about them, they turn up because it’s a National Garden Scheme garden. So you're constantly busy. You can't let it slip. It's got to look right!”
 

Awareness of open gardens – and the immense impact of how the National Garden Scheme funds health and nursing charities, like Hospice UK – is something very close to Karen’s heart. She doesn’t just open her garden – she champions the reason behind it all.

“Sometimes when I put the open gardens posters up, people will ask me what it’s all about. And I tell them that it's an open garden, but all the money goes to these really great charities. Sometimes even in garden centres they don’t know about the scheme. I don't think there's enough awareness of how much they raise and where the money goes. But the minute you say Hospice UK, or Macmillan, everybody's on board.

“Most people, as they get older, have an experience of those charities. I get lots of people offering to supply cakes for my open garden because they've been helped by them, and they want to do something in return.

“Hospices are there at the worst time in someone's life. You never lose that feeling of gratitude and remembering what people did for you. When I started, I thought I was just doing something to help them, which of course it does, but it also helps me. It's a small thing to do that really, isn't it?”
 

For 12 years now – 2026 will be her 13th open garden – Karen has been opening her garden to the public, to raise money for the National Garden Scheme and its beneficiary charities. She opens up about how she keeps going, year after year:

“Every year I say that this is my last year, but it never is, because I just love gardening. I've always gardened and I can't see me ever stopping. I love plants, I love the garden and it's where I like to be. It's really not that much of a hardship to do an open garden, apart from when the weather's so hot, and I'm just dashing around watering everything! It really gives you something to work towards.”

Karen explains that part of the joy behind holding an open garden isn’t just the fulfilment of seeing her garden looking at its best. It’s the people who come to share what she’s done, and the meaningful conversations she has with them.

“You get a real mix of people visiting, but everybody who comes has an interest – which is another really lovely thing because it allows me to stop bothering my husband by asking whether he likes this plant, or that one! You get to spend an afternoon chatting with people who like gardening too, who are genuinely interested in what I've done. 

“And then they'll talk about their garden. It’s a lovely way to meet people. 90% of people come because they're interested in gardening, and want to support the charities."
 

Karen’s passion for gardening and her gratitude for how hospice care shaped Jake’s end of life experience was rewarded when she discovered a new type of dahlia in her garden. A tree dahlia had crossed with a herbaceous variety to create a new hybrid – and the RHS recognised this, allowing her to name it herself. She chose to name it after her son: Jake Mann.

And it’s not just the dahlia that reminds Karen of her son – some of the visitors to her garden bring special memories with them too.

“What’s been really nice for me is people who've known Jake sometimes come along. I've had people come to look at the garden, and then say, ‘do you remember me?’ And it will be somebody who had been involved with Jake along the way, which is just so touching. 

"They perhaps wouldn't have got in touch with me otherwise, but they come to the open garden and then say hello and remind me who they were and what they'd done.”
 

Like Hospice UK, Karen is on a mission to change perceptions around hospice care, and show people that they are places of peace, compassion and brilliant care – with staff who exemplify the hospice movement.

“When Jake was first diagnosed, and then the hospice started to be mentioned, if you know nothing about it, the word ‘hospice’ is frightening, isn't it? You might find yourself thinking that it’s a really scary place and that you don't want to have anything to do with that. And then you realise, actually it's not. It's a brilliant place. They're full of lovely people. You just don't realise until you've actually had an experience with hospice care.

“So it would be nice if people go to the garden and realise it's not quite like that.”

The connection between gardens, healthcare, hospices and wellbeing, is a powerful one – and, Karen says, keeps her passionate about opening her garden for the National Garden Scheme, and hospice care, year after year, rain or shine.

Thank you to Karen for sharing her and Jake’s story.