A diagnosis of cancer hits you like a punch in the stomach. Other diseases may be just as life-threatening, but most patients know nothing about them. Everyone, however, knows that cancer means pain, horrible treatments and - although no longer quite the unmentionable ‘Big C’ of twenty-five years ago – early death.

Those were the words of Maggie Keswick Jencks, an extraordinarily brave woman who before she succumbed to cancer laid the foundations of a cancer care charity with a difference, Maggie’s. This pioneering organisation has changed the way that people with cancer and their families are able to receive help and guidance in order to retake control of their lives.

During Maggie’s treatment, she found that there was very little information available and it was couched in jargon. Maggie envisaged a place where everyone affected by cancer could go and receive relevant information as well as learning about alternative approaches, nutrition and other details such as finding the right wig for those suffering hair loss. This may seem like a minor irrelevance but self-esteem is a very important factor with regards to recovery.

When Maggie’s was first set up twelve years ago it was unique in that the focus was as much on the friends and family as well as the patient. It was designed to be a warm and personable centre where people can go to find out about the implications of their diagnosis and a place where their family could receive support.

Walk into Maggie’s Edinburgh Centre and you are instantly struck by the warmth and homeliness of both the surroundings and the staff. The soft furnishings and wood floors make the light and airy building seem more like someone’s home than a place where people go to receive help and guidance about cancer.

Marion Taylor is the fundraising co-ordinator for the Maggie’s Centre in Edinburgh, which sits in the grounds of the Western General Hospital. She said: “Everything is bright colours and very relaxing, totally away from a hospital feel. Most cancer centres can be quite dour and quite like a hospital and as soon as you come in here it’s the complete opposite and a very nice feeling.

“We have had people coming down for the day and they can have lunch down here and go on the internet because it is a bit more relaxed down here than just looking at four walls.”

The facility contains information on all of the different aspects of the disease and also has all of the modern conveniences of a home and it is a place where people can relax and talk to a trained member of staff or just have a cup of tea with one of the many volunteers.

Edinburgh’s was the first centre to open and Scotland now boasts five full centres and one interim service. Two interim services are currently running in England and Wales and a permanent centre will open at Charing Cross Hospital in London in April 2008.

Ask anyone what disease they are most scared of and many give the same answer – cancer. One in every three people will be diagnosed with some form of cancer during their lifetime. Even if one is lucky enough not to contract cancer they will almost inevitably know of someone that has.

Cancer care has traditionally focused on the sufferer and even then aftercare has been almost a side issue. Friends and family of those diagnosed were left to deal with the effects on their own. The experiences of those close to a cancer patient could be just as traumatic and Maggie’s is designed to help all who are touched by it. 40% of the people who use Maggie’s Centres are those close to the sufferer.

The centre offers a range of courses that are designed to enlighten and guide those affected whilst keeping the focus on self-help. These include practical advice on the benefits available, carer support and managing stress as well learning about cancer through expressive art. Maggie’s is a completely free service that is funded through charitable donations and fundraising.

Andrew Anderson was a cancer nurse who worked in oncology for 12 years before switching to Maggie’s eight years ago. He said: “All of the staff that work within the centre are specialists within a field in relation to oncology care either as cancer nurses, radiotherapy specialists, psychologists – all professionals with a significant amount of training. What is crucial to Maggie’s is that there is training in all the centres to provide relaxation stress management skills, group support and individual support as well as being able to be give the supervision and support within the centre.

“The impact of a cancer diagnosis for the majority of people is quite a huge and overwhelming experience and coming to Maggie’s is about talking through those experiences and finding a way of supporting yourself and your family through that experience.”

The staff and volunteers who work at Edinburgh Maggie’s are a closely knit team that help each other as well as the eighteen thousand people who pass through the centre each year.

Andrew said: “It is really important for us to be able to care for ourselves during that process as well so as a small team we support each other extremely well and effectively. Maggie’s is an organisation that provides an infrastructure of support and training.”

Having worked in hospitals as well as Maggie’s, Andrew is well placed to comment on the differences that exist between the two. He added: “Hospital based cancer treatments have improved significantly and the infrastructures of support within the hospitals are improving so there are more clinical specialists and psychologists and there are also more social work teams but still it isn’t enough to provide for the extent of distress and upset that a cancer diagnosis often causes.

“We have a strong working relationship with the hospital. If there is someone they are really concerned about then they will walk down with them and introduce them to us and they are very good at signposting people to this centre. Between 80 and 90% of the people who are diagnosed with cancer are told about Maggie’s and encouraged that it is a sensible resource and if an individual comes into the centre and they have a difficulty with the hospital systems often we can help them negotiate and navigate that as well.

“It is a very close working relationship and all of us that work in the centre have worked in the oncology unit so there is an automatic feeling of trust as well. What is important about Maggie’s is the level of psychological support that it can provide and the extended group based support facilities that it provides within a framework of professional support. Although we only have five professionals in the centre it is also very much about people meeting each other and sharing experiences in a safe, uplifting, wonderful environment as well as the professional element of support that is provided.

“Maggie’s is here as a resource to explain and disentangle the information in and around what that diagnosis might mean and to give people a structure of understanding of what’s actually happening as well as then giving them a space to talk through the implications of that diagnosis for themselves, their family members and their friends and that is something that is a real absence in hospital care. In hospitals there is no after treatment, maybe every six months you go to see your consultant but here you can continue to come every week for as long as you wish, indefinitely.”

Maggie writes in her book ‘A View from the Front Line’ that one of the main ways of reducing fear in patients is for them to be fully informed, something she found lacking during her own treatment. Maggie wrote the book on all aspects of her care and how she believed changes could help in the hope of helping others.

Maggie also writes that, “Above all what matters is not to lose the joy of living in the fear of dying. Involvement in one’s own treatment is an empowering weapon in this battle. I believe it will be proved in time to make a difference in mortality, but meantime there is a reasonable body of evidence to suggest that patients who eat healthily, keep active and take steps to deal with stress and fear, feel fewer symptoms and less pain even in the final stages of their disease.”

Maggie would be happy to know that her ideas are being carried on so successfully by the cancer care centres that bear her name and that they further the ideas and innovations that Maggie discovered during her own battle. Perhaps even she would be pleasantly surprised at the growth of her centres and the amount of incredible work they accomplish. Maggie’s have six centres planned to open across England and Wales by 2012, a further two centres in Scotland and overseas centres are also in planning stages.

Marion said: “It is quite a proud thing to be working for a charity that started so small with just the one centre and now we have a potentially huge charity. It is needed because there isn’t really anything else out there like a Maggie’s Centre.

In 2006 nearly forty thousand people made use of the various centres which was an increase of 19% on the year before and these figures keep rising. People return to the centres on average six times. As well as branching out in Britain a centre is in planning stages in Hong Kong and more are planned overseas.  Andrew is recently back from a four day trip to Hong Kong where he was helping to set up Maggie’s first overseas centre. Cancer is a worldwide affliction that crosses over borders and cultures.