Support for Cancer Patients

The national cancer information service, Cancerbackup, recently celebrated twenty-three years of helping to support people with the disease.  The organisation, which used to be known as BACUP (British Association of Cancer United Patients and their families and friends) began in October 1985.  

It was the brainchild of an exceptional woman, Dr Vicky Clement-Jones, who decided to “kick cancer out of the closet” when she herself was diagnosed with ovarian cancer at the age of thirty-two.  She wanted to combat the conspiracy of silence surrounding the disease at that time. 

In an article published in the British Medical Journal, Dr Clement-Jones described how, during her treatment, she came to realise two important things about living with cancer. 

Heightened Awareness 

She described a heightened awareness of how precious life is.  Despite the operations and intensive courses of chemotherapy, Vicky Clement-Jones found that her enjoyment and appreciation of life and her family and friends were enhanced. 

This feeling is sometimes referred to in the medical literature as one of the “secondary gains of illness.”   Dennis Potter put it better in his final TV interview when he told Melvyn Bragg that the blossom outside his window was “the whitest, frothiest, blossomest blossom that there ever could be.” 

A Change in Attitude 

Vicky Clement-Jones noticed that her quality of life could be improved by changing her attitude to her situation.  

Working on the premise that quality of life could be measured by the extent to which a person’s hopes and ambitions are matched by their experience, she changed her expectations during her treatment.  This seemingly simple strategy enabled her to derive great pleasure from the things she could do, such as enjoying her garden or going out to dinner with friends, helping to prevent her from dwelling on the frustrations of not being able to do all the things she used to. 

Coping with her illness in this way, Vicky Clement-Jones came to the conclusion that one of the reasons she was able to do so was because she was in a privileged position.  

As a doctor herself, she was easily able to glean information about her illness.  She knew the right questions to ask and medical colleagues caring for her respected her need for information.  This, in turn, helped her family and friends to understand her illness and the lines of communication and support were kept open. 

Talking to other patients, Dr Clement-Jones became aware that there were two levels of information that people needed to improve their quality of life. 

• The first was medical information about their disease, its treatments and the outlook for the future.  Too often this information was imparted at a time when patients were too shocked to take it in properly.  

• The second was for “experiential” information, knowledge that could only be shared by people who had “been there.”   

Recognising the need to combine the medical and experiential levels of information led Vicky Clement-Jones to form the concept of BACUP. 

It was designed as a partnership between those affected by cancer, either as a patient or carer, and the health professionals.  In her words, it was to “provide a forum for the exchange of information and the pooling of practical knowledge about living with cancer and its treatment.” 

BACUP was launched in October 1985 with Dame Mary Donaldson, former Mayor of London as its President.  Four cancer information nurses staffed the telephone line. 

By 1986 the number of staff had grown to eleven. They dealt with an average of sixty queries a day.  In its first fifteen months BACUP was able to help 20,000 people.  

Just before her death in 1987, Vicky Clement-Jones launched a branch in Jersey. 

Since that time the organisation has gone from strength to strength, becoming a limited company in 1993, with Tim Clement-Jones, Vicky’s husband, as one of its trustees.  

By 1995 its budget was £1.4 million and its many publications were being translated by cancer organisations around the world. 

A website was established in 1997 with over 1500 pages of information for cancer patients, which by 2002 was visited by up to 120,000 people a month. 

In May 2005 a new website was launched specifically for teenagers with cancer. 

Twenty-three years after Vicky Clement-Jones first launched it, Cancerbackup remains true to her vision.  Central to its work is still the right to information, access to the most effective cancer treatments and the best quality of life for cancer patients. The organisation has recently amalgamated with Macmillan Cancer Support. 

As Professor Tim McElwain said in 1987, addressing a congregation at St Paul’s Cathedral, gathered to celebrate her life, “Out of all that pain and suffering and uncertainty she brought forth BACUP and that is her memorial.”