Susan Campbell Duncan

At the last count, Susan Campbell Duncan reckons she has had at least 60 operations since contracting a rare form of cancer while still a baby.

If anyone can said to be an expert in NHS care, it is Susan who has spent long periods of her life in hospital. She is now in her 40s and working as a personal assistant in the Scottish Government’s Health Directorates where she makes the most of any opportunity to use her experience as a patient to help design better services for others.

“After they removed the tumour, all I had was a big hole in my face. . . .”

Susan was only four months old when it was discovered she had a facial sarcoma. Surgery was ruled out on such a young baby and radiotherapy was used to shrink the tumour. This helped initially but, at the age of two, it was decided that surgery was the best solution to prevent the cancer returning. It was drastic action, resulting in the removal of Susan’s left cheekbone and all the facial tissue on the left side of her face from below her eye to her jaw, including half her palate. “After they removed the tumour, all I had was a big hole in my face,“ said Susan. “I can understand why they did it – if not, maybe I wouldn’t be here today.”

Despite this, she started school at the age of four and did everything that all the other children did. “At that time, I was not aware of any reason why people would treat me any differently.”

The work to rebuild Susan’s face involved a series of operations and often long stays of up to nine weeks at a time in hospital. In the 1960s and 70s parents were not allowed to stay with children in hospital and Susan missed her mother. “Once I went on hunger strike because I wanted my mother and they had to get her. I was only three at the time – that is how determined I was. “ Susan welcomes the support that is now offered to children and families to help them cope with serious illness. None of that was available when she needed it.

She took part in a BBC television documentary in 1996 which helped to change people’s attitudes to facial disfigurement and, today, she is an advisor to the charity Changing Faces. Changing Faces supports the one million plus people in the UK who have some form of physical disfigurement and challenges discrimination which can blight their lives.

In 1998 she was sent by the NHS to the United States to get major reconstructive surgery which could not be performed here. One of the first things she was asked was if she had insurance to pay for the operation. It brought home to her that not everyone is lucky to have a health service that provides help whenever it is needed.

Susan is extremely grateful for the high quality care she has received. “There are some really fantastic people who work in the NHS. My case was very unusual case and they really were pushed to the limit but today I can lead a very full life. You cannot beat the NHS.”

• Further information
• Changing Faces