Lily Jencks was just 15 when her mother Maggie died. A year later in 1996, the first cancer care centre bearing her name opened. Two decades on and there are now 20 Maggie’s Centres around the UK and abroad. Lily talks to Janet Christie about her inspirational mother and the ongoing work to ensure people don’t lose the joy of living in the fear of dying.
She would be totally surprised and delighted,” says Lily Jencks. She’s talking about her late mother Maggie, and how she thinks she would react to the idea that two decades on, her vision of a cancer support centre has become 20 of them, from Scotland and across the UK to Hong Kong.
When Maggie Keswick Jencks was given the news in 1993 that the breast cancer she had beaten five years earlier had recurred and spread to her bones, liver, and brain, she found herself dealing with the bombshell in a hospital corridor.
“No patient should be asked however kindly and however overworked the hospital staff, to sit in a corridor without further inquiry, immediately after hearing they have an estimated three to four months left to live,” she wrote.
The landscape designer, painter, wife of landscape architect and designer Charles Jencks and mother of two teenagers resolved to do something about the situation. While she prolonged her life by a further 18 months after joining a trial involving advanced chemotherapy, she also came up with the idea for a cancer caring centre. Her vision was a place away from a hospital setting, where cancer patients could find information and support, therapy, counselling, oh and let’s not forget tea, biscuits and chat around the kitchen table.
Maggie died in 1995 when Lily was 15 and her centre, the first Maggie’s, built in a former stable block at Edinburgh’s Western General Hospital, opened in November 1996. Her vision took root and went on to flourish so that now, 20 years on, there are 20 centres that bear her name, with the latest due to open shortly in the grounds of Forth Valley Royal Hospital in Larbert. There is a Maggie’s in Hong Kong, one being built in Tokyo and Maggie’s are advising on a centre in Barcelona designed by Benedetta Tagliabue, the architect who along with her husband Enric Miralles designed the Scottish Parliament building.
“I was 13 when my mother first got ill and my parents wanted to protect me and my brother so we didn’t really know how serious it was. And because she was doing stress management and eating well, she was really healthy just before she died. Starting the Maggie’s Centre, she was very energised by that,” says Lily.
“My mother would be surprised it has grown into such a powerful movement,” says Lily, who is also surprised by how the centres have blossomed. “We didn’t see it growing this big. It’s a testament to how much everyone understands the need for it, how the NHS sees us, and how hard the team works. At the beginning we didn’t think we could make such a nationwide contribution, so it’s incredible.”
At Maggie’s Centres those affected by cancer find the support they need: cancer support specialists, benefits advisors, nutritionists, therapists and psychologists.
“We are drop-in centres, helping people with end of life and palliative care, but it’s about living with cancer and a celebration of life, networking, dealing with side effects and getting the best advice and information from doctors and nurses, learning stress reducing strategies, psychological support and having the chance to socialise with others in the same situation in a relaxed setting,” says Lily.
The programmes may vary with the needs of their users, but at the heart of every Maggie’s is a kitchen table, where people can chat about everything from the football to fear of dying, seek advice and support or just sip tea and eat biscuits, as they negotiate their way through life with cancer.
“Each centre is slightly different and has lived up in a different way to her vision. She would be delighted by that variation. But the values are the same, and a lot of the people and ideas have stayed the same. My mother’s oncology nurse, Laura Lee, is still there as chief executive, and my father is always there, driving things,” says Lily.
With 30,000 new cancer diagnoses a year in Scotland and 220,000 people living with the disease, an incredible one in four of those diagnosed at the moment is supported by a Maggie’s. The charity’s ambition is to support every single one of those people, so that everyone diagnosed with cancer and their family and friends can find the practical, emotional and social support they need. And the need is growing. By 2020 almost half of the UK population is expected to have cancer at some point in their lives, and every two minutes someone in the UK is diagnosed with the disease. There has never been more need for Maggie’s Centres.
“We started one in Edinburgh because my mum was there, then Glasgow had a site we could convert. People wanted them and we had contacts, so it grew, but we didn’t think it could be something everyone in the country would have access to. That’s what we’re aiming for now. There’s very much a desire to make sure that everyone knows us and uses us,” says Lily.
“In the beginning it was opportunistic. Now we have to be more strategic. If we really want to help everyone in the UK, where should we build? Where is the best place to reach people, rather than which sites is the NHS giving us, or which places have cheerleaders.”
To reach out, Maggie’s needs to employ more staff and expand existing centres, as well as its online centre. And for that it needs funds. The centres are supported almost entirely by voluntary donations and the people of Scotland have raised nearly £50m in fundraising events such as sponsored walks, cultural crawls, baking, skydiving and simply making a donation.
“Remote outreach is a priority,” says Lily. “The NHS are centralising their oncology units so more people have to travel further for better treatment, and it is very dispersed, so online is the only way to contact people who are very remote.”
Maggie’s Centres may vary up and down the country, but the one thing they all have in common, as you would expect given the occupations of the co-founders, is the attention given to the landscaping and architecture.
Great design both inside and out is integral to Maggie’s, with a roll call of architectural giants including Frank Gehry, Zaha Hadid, Richard Rogers, Kisho Kurokawa and Norman Foster working on the centres. In Nottingham the centre appears to float among the trees, in Aberdeen it’s cradled in a big white oval, Swansea swirls in a cosmic whirlpool and Gehry’s Dundee Maggie’s manages to combine the comforting tradition of a but and ben under a riotously wavy silver roof. The 20th centre in Larbert, designed by Garbers & James, is equally diverting: on the banks of a loch and situated in 70 acres of ancient woodland, Maggie’s Forth Valley has a stunning setting with views over the Ochils.
As a landscape designer, Maggie Keswick Jencks knew about the role architecture plays in health and had a firm belief in the power of design, both in the external setting and interiors, to improve wellbeing.
Born in Scotland in 1941, she had grown up between Dumfries and the Far East, especially China and Hong Kong, where her father ran a company. It was there that Maggie first became captivated by Eastern gardens. After school she studied English at Oxford University, then joined the Architectural Association where she met her husband Charles. Together they converted houses and created gardens, including the incredible Garden of Cosmic Speculation in Dumfriesshire, where Maggie’s love of Chinese landscape gardening and its philosophy flourished. They also created two children, John and Lily. As well as her landscaping skills, Maggie worked on the charitable trusts her father had set up – including a young people’s support project in Scotland and a hospice in Hong Kong – experience that was invaluable in planning her own cancer caring centre.
“Growing up in Hong Kong and China where there’s a more holistic approach to medicine, that influenced her,” says Lily. “That has become very accepted generally in the last 15 years or so and it’s always been a huge part of Maggie’s. So perhaps in that sense Maggie’s was pioneering. Now people ask us for advice and we’re happy to be seen as a good model.”
Today Lily Jencks is 36, with a young daughter of her own, and has followed her parents into landscape architecture. Growing up between London and Dumfries, she works with her father Charles on JencksSquared, a land art, architecture and landscape partnership, and also runs the Lily Jencks Studio, an award-winning design firm integrating architecture, landscape and art to improve the environment of our cities and surroundings. She shares her mother’s beliefs about how landscaping and architecture can affect health and well-being.
“It’s very difficult to prove directly but it definitely affects your psychological well-being, from how a building is organised to how you navigate it. Whether you can see the nurses and find that comforting, whether the staff can see you without you feeling watched. And the detail of the architecture is important, if it’s carefully done and isn’t the cheapest, with a lack of respect for the individual. It’s not always about the cost, but how much care has gone into something. For example the weight of a door, or shape of the handle, how easy is it to move through the space. A peeling veneer doesn’t say we are thinking about you and your experience as an individual,” she says.
“It’s about thinking through how a person experiences a place, how they use it, particularly a sick person. It’s important you start out with that person’s experience.”
Based in London, Lily is currently teaching a course with the Architectural Association about the architecture and design of healthcare environments.
“Healthcare is an environment where it really matters, where the stakes are very high,” she says. “Hospitals are where we experience our most profound life changes: birth, death, illness, and everything in between, and they’re not always designed to accommodate that. But everything in Maggie’s is designed to show an enthusiasm for life. You need that – something to give you life and power.”
It was Lily who designed the internal courtyard plantings and wooded glades surrounding the Glasgow Maggie’s Centre at Gartnavel, opened in 2011, and the gardens at the centre in Hong Kong.
“At Gartnavel the first thing you see when you come in is the view outside through the window. There’s no reception desk but the people from the office can see you come in. You can sit on the sofa and see what this place is about, see straight into the kitchen and feel at home.”
“I’m very interested in landscape and architecture together and trying to think about them in a holistic way. Gardens are important to Maggie’s because of that holistic idea, that it’s not about the individual alone with cancer, but they are part of a community and an environment.”
Again, the grounds of each Maggie’s Centre vary, with landscaping making a virtue of the various locations.
“In Fife there was a dip in the ground with mature trees around it already, which was perfect, and in Gartnavel the courtyard and woodlands are important. In London the centre was created in a car park so more was done there. You walk from the concrete of the hospital towards bright orange walls and beautiful interiors. Some of the centres spiral around you as you enter, like being folded into someone’s arms and there is always greenery, which is always transformative.”
Another of Maggie Keswick Jencks’ legacies is a determination not to lose “the joy of living in the fear of dying” and her daughter feels that at Maggie’s Centres this is in with the bricks.
“The joyful element is very important. Frank Gehry is very playful, and Benedetta [Tagliabue] plays with how you move and walk through the space. The buildings don’t take themselves too seriously, although you can have very serious moments in them.
“And there are elements of surprise. At Gartnavel there’s a mirror installation outside which is something that’s unexpected, to take people outside of themselves. It’s just something to contemplate, because cancer is so all-consuming. For a moment you’re not thinking about the troubles you’re having, but how the sun reflects on the glass or how the humidity condenses on a surface.”
Moments of reflection and concentration, like those Lily remembers sharing with her mother when they drew and painted together when she was a child, some of her favourite memories.
“I remember she was very energetic, always involved in lots of things, but when she was drawing or painting, looking at a view, she would be very focused and still and calm. I wasn’t, I was always very frustrated because I wasn’t as good!” Clearly Lily’s drawing skills have blossomed along with her mother’s vision for Maggie’s.
“The senses and changes in the seasons are important,” she says. “In Hong Kong you can grow wonderful scented flowering plants because it’s such a wonderful environment. And in Glasgow, people always talk about the bulbs. They say ‘I will keep going until the bulbs come out of the ground in spring. I will wait to see that happen’. That’s very moving.”
“Landscapes are therapeutic. They connect you to something wider than yourself, the seasons, changes in the light, the plants. All of the cycles of life.” n