Cancerbackup

Cancerbackup

Fate	Merged with Macmillan Cancer Support (2008)
Key people	Dr Maurice Slevin Dr Vicky Clement-Jones

Cancerbackup was a UK charity that provided information and support for cancer patients and their families. Founded in 1984 as BACUP, the charity operated as an independent entity until 2008, when it merged with Macmillan. Over the years, Cancerbackup published hundreds of booklets and factsheets about cancer and cancer care while managing one of the world’s most widely used cancer information websites.

Origins

In 1984, Dr Vicky Clement-Jones, a doctor specialising in endocrinology at St. Bartholomew’s Hospital in London, was diagnosed with ovarian cancer. She underwent treatment, including surgery and chemotherapy.

On completion of her treatment, Dr Clement-Jones published an article in the British Medical Journal called “Cancer and Beyond”. In it, she emphasised how she had realised that up-to-date and accurate information about her cancer and its treatment were crucial to enabling her to cope physically and emotionally. She described how she was visited in hospital by many other patients who did not have the same access to information that she had. At this time, prior to the internet, the only realistic and reliable source of information for patients with cancer was from their doctor.

Dr Clement-Jones realised that these patients often needed to be given the same information repeatedly. For most patients, there was no realistic possibility of getting that information in a timely manner. This made it more difficult to deal with their emotional turmoil and make decisions about their care.

She approached her oncologist, Dr Maurice Slevin, consultant medical oncologist at St. Bartholomew’s hospital, with a proposal to create a national Cancer Information Service. The intention, as she put it, was to “Kick cancer out of the closet”. Dr Slevin put her in touch with Dr Tim McElwain, Professor of Oncology at the Royal Marsden hospital, who was enthusiastic about her proposal. The idea was regarded as radical in 1984, when doctors jealously regarded their right to give patients information they judged was appropriate.

Website launch

In 1997, BACUP (as it was then) launched its website with all its publications available in full online. The new site designed for cancer patients featured over 1,500 pages of cancer information covering all aspects of cancer, plus a searchable database of over 700 support groups and organisations for cancer patients in the UK.

At that time, only a minority of people in the country used the internet and it was difficult to envisage how important it would become in their lives.

Eventually, the BACUP website became the second most visited cancer information website internationally, with more than 750,000 pages viewed each month in 1999.

The name BACUP was changed to CancerBACUP in 1998.

Early history

In July 1987, Dr Clement-Jones lost her fight against her cancer. The memorial service was held in St. Paul’s Cathedral with a moving address by Prof Tim McElwain. Dr Slevin took over as chairman of the Board of Trustees and remained in that position until the merger with Macmillan in 2008.

In 1988, the British Medical Journal published an analysis of the first 30,000 enquiries handled by BACUP in its first two years. BACUP had produced booklets on all common cancers as well as hundreds of factsheets on individual cancer drugs. These were initially written by Dr Maurice Slevin and edited pro bono by willing colleagues who recognised the value of the project.

In 1989, Princess Alexandra became the patron of BACUP. By 1990, on its fifth anniversary, BACUP had helped over a hundred thousand people.

Website launch

In 1997, BACUP launched its website with all its publications available in full online. The new site designed for cancer patients featured over 1,500 pages of cancer information covering all aspects of cancer, plus a searchable database of over 700 support groups and organisations for cancer patients in the UK.

When Dr Slevin showed this website for the first time to the charity board, they were impressed by the presentation. At that time, however, only a minority of people in the country used the internet and it was difficult to envisage how important it would become in their lives.

Eventually, the BACUP website became the second most visited cancer information website internationally, with more than 750,000 pages viewed each month in 1999.

The name BACUP was changed to CancerBACUP in 1998.

Regional expansion

By 1999, CancerBACUP nurses assisted more than 46,000 patients and their families each year. CancerBACUP had published 54 substantial booklets covering all aspects of cancer and its treatment. The organisation also published more than 70 fact sheets covering less-common cancers and treatments as well as various publications on living with cancer.

From 1999 onwards, CancerBACUP opened local centres in several cities and hospitals in the UK.

CancerQs' launch and controversy

In 2001, CancerBACUP launched a new aspect of its website called CancerQs. The aim was to provide concise answers to over 1,000 of the most common questions asked of the cancer information nurses.

CancerQs also moved into advocacy, carrying out surveys and commenting publicly on issues relevant to cancer patients. This was not without controversy, as part of the advocacy involved lobbying for new cancer drugs to be available for cancer patients on the NHS. It was suggested that Cancerbackup was influenced by the pharmaceutical industry and was acting as a voice for the industry.

The chairman of Cancerbackup, Dr Maurice Slevin, responded with a letter to the Lancet. He demonstrated that less than 10% of Cancerbackup funding came from the pharmaceutical industry and that pharmaceutical firms had no influence on the charities lobbying on behalf of cancer patients.

Later history and merger with Macmillan

In 2003, CancerBACUP launched a national guide about cancer and genetics for people concerned that they may have inherited an increased risk of cancer.

In 2006, the organisation changed its name to Cancerbackup in an effort to more clearly define what the charity did. The same year, Cancerbackup’s website won the Patient Website of the Year in the Patient Association Awards, one of several accolades over the years.

In 2008, Macmillan approached Cancerbackup and suggested a merger. It had always been a huge task for Cancerbackup to raise the £5 million a year it cost to run the charity, and Macmillan had the resources to provide the service without any financial limitations.

The Cancerbackup board unanimously approved the merger. Following the merger, Prof Amanda Ramirez and Dr Slevin joined the board of Macmillan.

Cancerbackup’s merger with Macmillan was regarded as a great success. The number of calls answered by the cancer information nurses, the distribution of publications, and the use of the website all increased substantially. However, controversy arose over Macmillan’s failure to honour its commitment to maintain Cancerbackup as a sub-brand of Macmillan on its publications and website.

Timeline of Cancerbackup board members and senior staff

31st October 1984 – First Working Party meeting of BACUP. Dr Vicky Clement Jones, Dr Maurice Slevin and Prof Kenneth Calman become Trustees. Prof Tim McElwain was chairman of the Medical and Specialist Advisory Board.

3rd December 1984 – BACUP Steering Committee members were Mr Peter Belchamber, Prof Kenneth Calman, Prof Anthony Clare, Dr Clement-Jones, Dame Mary Donaldson, Prof McElwain, Mr Derek Reynolds, Dr Slevin, Ms Elizabeth Sturgeon, Ms Janette Weir, Dr Peter McGuire, Mr Ray Whitfield and Dr Peter Wrigley.

• 1985 – Dame Donaldson (former Lord Mayor of London) became President of BACUP.
• 1986 – Lord Tim Clement-Jones and Prof McElwain became Trustees.
• 1987 – Following the death of Dr Clement-Jones, Dr Slevin took over as chairman of the Board of Trustees.
• 1988 – Dr David Poole and Ms Carolyn Faulder joined the Executive Committee. Ms Olivia Dix became Chief Executive.
• 1992 – Prof Michael Whitehouse became chairman of the Medical and Specialist Advisory Board and Mr Alan Watson became chief executive.
• 1993 – Mr David Donne, Dr Poole. Ms Loretta Tinckham, Mr Pat Lamburn and Lord Tim Bell were appointed Trustees.
• 1995 – Ms Jean Mossman became chief executive.
• 1996 – Prof Lesley Fallowfield and Mr David Amos became Trustees.
• 1997 – Prof Nick Thatcher became chairman of the Medical Advisory Committee.
• 1998 – Dr Terry Priestman becomes chairman of the Medical Editorial Board.
• 1999 – Mr Alastair Ross Goobey and Mr Michael Hoare became trustees.
• 2001 – Ms Joanne Rule became chief executive. Mr Peter Caplan became a trustee.
• 2003 – Ms Hilary Cropper CBE and Mr David McDonough became trustees.
• 2005 – Sir Ronald de Witt, Prof Amanda Ramirez and Sir Peter Stothard became trustees.