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Trekstock: offering support for young adults with cancer

14 January 2022

Trekstock is a cancer charity that was set up in order to provide tailored support for younger people with a cancer diagnosis, focusing on the age range of 20 to 40 years old. It was founded in 2009 by Sophie Epstone after she became aware of a huge gap in tailored support for those diagnosed with cancer in their 20s or 30s. Sophie witnessed this gap in provision after a family friend had treatment for lymphoma and found himself in hospital surrounded by people much older than him with differing priorities and needs. In order to fundraise for this cause Sophie signed up to climb Mount Everest. By combining the names of the iconic rock festival Woodstock and the need to raise money for her trek…’Trekstock’ was born. Having not been directly impacted by a cancer diagnosis herself, Sophie knew she couldn’t speak for the people she wanted to help, so she set up the first Trekstock Young Person’s Panel to find out exactly what they needed. They wanted more community, connection, fitness, health and wellbeing, being seen as a human rather than just a cancer patient and emotional support to deal with the cancer fallout. And so Trekstock set about figuring out how to provide solutions to these problems. .  

“There is a feeling of being let go once the cancer journey comes to end, yet there are so many more hurdles to overcome before resuming a ‘normal life’. Trekstock seems to act as that bridge to give support and information to those who need it."

As Trekstock has grown over the years they have developed a philosophy based on three different aims -:

CONNECT - bringing young adults together to create a safe environment, harnessing the power of peer support and addressing feelings of isolation. Support is delivered online, at in-person events and meet-ups as well as giving young adults access to the ‘Renew’ 8-week exercise course which gets them moving together.

MOVE – helping to improve physical and mental wellbeing by equipping young adults with the tools they need to become active, through a range of specialist programmes run by experienced instructors with a Level 4 Cancer Rehabilitation qualification.  Activity has been shown to have research-proven benefits but in general terms access to programmes is very patchy and health care professionals frequently do not promote physical activity. As well as the ‘RENEW’ online 8 week group programme that is free and open to people both during treatment and post, Trekstock can provide access to fortnightly online group Pilates sessions and has a 7 day yoga series on YouTube that people can access from the comfort of their own home.

INFORM – Providing relevant information delivered by experts via web content, Q&As and live panel discussions to tackle topics that matter to the young adult community through in-person panel events lifting the lid on everything from sex to exercise and everything in between. An online menopause programme connects people together and equips them with weekly bite-size info delivered by experts whilst the ‘Food & Cancer - What's the Deal?’ booklet dispels myths and provides information to help people make decisions safely. Future sessions include one in February looking at the challenges young people with a cancer diagnosis face in returning to work, particularly during a pandemic.  All panel events are available to watch on their YouTube Channel.  

When young people access Trekstock a modified HNA is completed and their needs assessed. They are then put in contact with relevant groups to provide them with peer support, information, physical activity support and a tool kit to help them live better with and beyond cancer. During the pandemic the majority of these groups have been meeting on-line which does offer extra flexibility.  

Jemima Reynolds, Head of Programmes and Engagement, is keen to help Health Care Professionals, such as UKONS members get the message out that Trekstock can offer young adults with cancer ongoing support and information whilst connecting with others in the same position. She tells us that ‘NHS cancer care is great when people are having treatment and are supported but young people feel that when treatment is completed they fall off a cliff and this isolation can continue when they are living with cancer long-term’.  This observation is also backed up when the top needs of young people who contact Trekstock are revealed as 

  • Psychological support
  • Physical activity
  • Nutrition
  • Sex & Relationships
  • Friendship
  • Menopause

All of which reveal that the concerns of young adults with cancer are based around maintaining their physical and mental health, staying connected and managing the longer-term effects of cancer treatment. 

More information on Trekstock for health care professionals can be found here

An academic evaluation of the ‘Renew’ exercise programme can be found here which ‘demonstrated a positive impact on the physical activity levels of young adult cancer survivors’. 

To put patients from 20 to 40 years in touch with what Trekstock has to offer then the webpage here is a great starting point. From this point they can link up with the organisation and ‘meet-ups’, find details of the ‘Renew’ exercise programme and explore information on diet and cancer. 

With thanks to Jemima Reynolds for speaking with UKONS about the charity.