Jo on being a Cancer Voice

A young woman stands in in her kitchen with a mug of tea in hand.
A young woman stands in in her kitchen with a mug of tea in hand.

Jo became involved with Macmillan after her own experience of bladder cancer in 2012. To get the treatment plan she wanted, she felt that she had to be her own advocate. As a Cancer Voice, Jo has reviewed cancer literature and books, become a Patient Champion, and tackled inequalities that LGBT people often face whilst affected by cancer.

Jo's story

I work for a Macmillan project based at Disability Solutions in Stoke-on-Trent but am also a member of the Patient Champions network for the Transforming Cancer and End of Life Care Programme in Staffordshire. This is a large-scale programme to improve the way that cancer and end of life services are coordinated in Staffordshire. 

The Patient Champions are a working group of people who have been affected by cancer or end of life issues, who bring together their insights and expertise to influence change and to keep the patient’s experience at the forefront.

More recently, I have been involved with the work of a taskforce looking at the experiences of LGBT people affected by cancer. We meet regularly and take part in activities designed to identify and start to address some of the inequalities LGBT people face in relation to cancer. I'm also a member of the LGBT Cancer Support Alliance, which meet regularly to collaborate on various work streams aimed at reducing inequalities for LGBT people.

Overall, the care I have received through my cancer treatment has been amazing. However, there were some experiences that made a difficult time slightly worse for me – and these are things I want to help change for other patients. As far as LGBT issues are concerned, I know services aren’t always as inclusive as they should be and people seem to be having worse experiences as a result. Healthcare professionals usually have the best intentions but may be lacking in awareness training and unsure of what words to use with LGBT patients, frightened of offending them or making them uncomfortable. 

I find it really fulfilling to start having these conversations and breaking down the barriers. I’m looking forward to seeing what the future brings and where all this work will lead. This is important work and I’m enjoying every minute of it.