Jo Taylor has been nominated by Nickala Torkington of Flourish CIC. Nickala says “Jo has tirelessly (not quite!), tenaciously and selflessly supported hundreds of women and families (if not thousands through the website and regular social media support) to better cope and live with their conditions. She is a respected patient advocate who is regularly invited by the medical and academic community to share her learning, expertise and innovation on a global stage.”
Jo says “After my own diagnosis with breast cancer in 2007, I became acutely aware of the lack of resources & information available to breast cancer patients. One avenue I explored was exercise, finding that my own mental health & well-being improved substantially when exercise became part of my own approach to my diagnosis.
Research shows that women who exercised moderately after a breast cancer diagnosis had approximately 40% to 50% lower risk of breast cancer recurrence, death from breast cancer, and death from any cause compared with more sedentary women.”
Who have you helped?
“I was diagnosed with secondary breast cancer in 2014 which is incurable but treatable and wanted to show other patients that you could still lead full and healthy lives living with an incurable disease.
Abcd is an organisation and network offering ongoing peer to peer support for patients with a breast cancer diagnosis, reducing fear, anxiety and isolation, supporting them to resume their normal everyday life, living with and beyond cancer. Numerous challenges are encountered daily. These include fatigue, physical de-conditioning, lack of motivation, lowered self-esteem and more.
We support any primary or secondary breast cancer patient who are going through or who have finished treatment or living with breast cancer.
Our main target audience is the breast cancer community. In the UK, 63,000 patients a year are diagnosed with BC. The website had been live for 6 years (www.abcdiagnosis.co.uk) we wanted to explore more practical ways of supporting breast cancer patients, so designed a Pilot Retreat which ran in the summer of 2016.
The abcd retreat programme consisted of a weekend residential course, offering a programme of activities, including Yoga, Cycling, Nordic Walking, Running, Holistic Activities. It provided opportunities for peer to peer support allowing people to exchange personal experiences, meet others, creating a network of support. To date, 102 cancer patients have attended the eight retreats that we have organised over the last three years.”
“Numerous benefits are linked to physical activity and breast cancer survivors. More specifically, Nordic walking and yoga have displayed positive outcomes amongst breast cancer survivors including improved quality of life, increased range of motivation, combatting fatigue and increased social interaction.
I have applied for grants like the National lottery twice and received funding to support the retreats. I applied to Tesco Bags for life and won the top funding for the most blue tokens collected in two months. Macmillan also part funds some of the retreat. I have had other funders support me and I also have a GoFundMe page which people donate to.”
What have you learnt? Any challenges?
“Ask questions early on regarding people attending, make sure that you get timely information. Be very well organized. Tell your story and where you are coming from to provide that bond with the people attending.
Its challenging to meet some people’s expectations sometimes of too little or too much exercise. Communication of getting the right answers to some questions on forms is sometimes challenging so I have redesigned the form to get the best information.”
“Our plans to scope out running our own centre in the Saddleworth area to create a hub that supports people and we can also look at franchising or licencing the retreats to others around the UK. Many people have shown interest in this, especially those who attend the retreat.
Developing programmes to support what I do and to continue providing the five yearly retreats. I’m also to develop some more local activities for local breast cancer patients that supports them on an ongoing basis.”
What advice, contacts or resources would help you?
“Advice on business models as a CIC may not be the right one going forward. Advice on running a business. Contacts whom can help me moving forward and information on franchising and licensing models. Volunteers to help with some of the work involved. Someone to help apply for grants.”
Why we’re sharing these stories
An individual or organisation from each of our five categories will be recognised at our Igniting Inspiration recognition event in November, but we want to publish all relevant stories to spread awareness of all the positive work that goes on in the North!