
Our long-standing Cancer Voices Patient Representative Jo Taylor has been celebrated in the King’s New Year Honours list! Jo has been awarded the British Empire Medal (BEM). It’s an award given to people who have made significant contributions to their local community or country.
Jo Taylor, Cancer Voices Patient Representative, talks on stage at the Greater Manchester Cancer Conference in 2024
The mum-of-two from Saddleworth, Oldham, will pick up her award in the summer this year.
We caught up with Jo to see how she felt about the news and look back on some of her work which has led to her getting the honour.
When did you receive your cancer diagnosis?
I was first diagnosed with breast cancer at the age of 38 while on maternity leave with my second child. During this time, I found there was a lack of information available for patients to support their decision making for surgery and other treatments.
This led me to set up After Breast Cancer (ABC) Diagnosis – a website with a multimedia library of information including blogs, signposting, newsletters, links, educational material and more for patients after they have been diagnosed with breast cancer.
Then in 2014, I was diagnosed with metastatic breast cancer – also known as secondary breast cancer – which cannot be cured. I wanted to let other women who had had breast cancer know about the risks of getting metastatic breast cancer and the signs to look out for so I developed some infographics which help explain this.
When did you first get involved with the Alliance?
I joined the Cancer Alliance after I got my metastatic breast cancer diagnosis and have worked with the Alliance for about 10 years.
I sit on the Breast Pathway Board – which is where decisions are made about how breast cancer is diagnosed and treated by the NHS in Greater Manchester.
I initially joined the Alliance because I wanted to raise awareness about metastatic breast cancer and ensure my infographics could be shared more widely with healthcare professionals in Greater Manchester. I also wanted to improve things for patients with breast cancer and metastatic breast cancer. I had an experience where I wasn’t fully aware of what happened when you got metastatic breast cancer. I found out that other people had the same experience as me, not just in this area, not just the UK but worldwide. People weren’t told about what could happen. So I wanted to make a difference and make sure women who had breast cancer knew the signs of metastatic breast cancer to look out for so if they did have potential symptoms they could ask for help from their GP quickly. I also wanted GPs to know the symptoms to look out for in women who had already had breast cancer.
What have been your main achievements while you have been with the alliance?
My infographics have now been rolled out across Greater Manchester so that healthcare professionals have information they can give to women when they have finished treatment for breast cancer. This means they know what to look out for. But my mission to raise awareness and make improvements for women affected by metastatic breast cancer continues. I also founded the charity METUPUK and one of my Directors of abcd nominated me for the New Year Honour for being a campaigner and advocate for people diagnosed with breast cancer and in recent years secondary (metastatic) breast cancer. Working with the Cancer Alliance and METUPUK, we have now run two conferences in Greater Manchester to further raise awareness amongst healthcare professionals, not just in Greater Manchester but nationally.
I have also shared my experience on stage at the Greater Manchester Cancer Conference, appeared in the media as a case study and provide regular feedback about breast cancer work in my role on the Alliance’s Breast Cancer Pathway Board.
How did you find it talking to NHS staff as a partner / board member compared to being a patient?
I was used to talking to people of all levels of people in my working life right up to CEO’s so I didn’t find it daunting. You can choose how much you want to get involved as a patient representative at the Alliance. There’s a variety of roles from being on a pathway board to attending regular quarterly update meetings with other patients where you get coffee and cake and hear about the work going on in Greater Manchester. Everyone respects each other and wants to make things better. The Alliance wants to and needs to hear from us as patients.
What advice would you give to someone thinking of becoming a patient representative?
I think it is good to be a representative because then you can play a part in making positive changes. Don’t feel intimidated because everybody’s the same. It doesn’t matter who they are. Everyone is there to make a difference. I think everybody should try and participate in something like this. Then at the end of the day if you don’t want to do it any more you can always stop. Give it a try, go to a meeting and sit with someone who can help and maybe mentor you.
How did you feel when you got your new year honour?
I was quite shocked really, because I just didn’t expect it. When I got the letter I thought who is writing to me from, you know, from His Majesty!! I can’t even remember what it said on there, but there was the Royal letterhead. And then I saw my husband and the kids were stood round me and I was like oh it’s from the King!! So I opened it and it said that I’d got the British Empire Medal. So I was very honoured. It’s very special you know. I was very touched and I did a bit of detective work to see who had nominated me and I know there was a lot of providing evidence of the work you have done involved.
What have you got planned next?
Well I might have a rest – I’ve got a holiday in April but there’s still lots of work to do to raise awareness of metastatic breast cancer and help stop people dying.
And I’m also working on the MET UP UK on the Darker Side of Pink Exhibition which is touring the UK to raise awareness of metastatic breast cancer so the work continues.
Are you looking forward to getting your award?
Yes I’m still deciding what to wear but it will be very exciting!