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This year we are thrilled to have launched our new Patient Entrepreneur Programme.

In our latest #OurPatients profile we meet cohort 1 Patient Entrepreneur Jen Rose, IBD expert by experience patient volunteer at Addenbrooke’s hospital, patient advocate, illustrator and patient education creator and CEO of Creative Patient Ltd.

Tell us a bit about yourself 

At age 10, I was diagnosed with an Inflammatory Bowel Disease (IBD), a chronic condition affecting the gastrointestinal tract. Growing up with IBD was incredibly challenging, particularly during my teenage years when the stigma associated with the symptoms I was experiencing, and the loneliness and isolation that came with it had a seriously detrimental effect on my mental health. It set the scene for many years of negative experiences with healthcare, and meant I failed to engage with my disease, or look after myself as well as I should have.

Years later, I was heartbroken when my son, at 10 years old, also received a diagnosis of IBD. Thismotivated me to finally engage with my own condition and I embarked on a mission to ensure he wouldn’t face the same difficulties that I had. Reflecting on what I had needed as a child living with IBD, I began educating myself, gathering as much information as I could and learning how to best support him on his journey.

Once my son was doing well, I began offering voluntary peer support to other young people who have IBD and their families. It soon became clear that many of the challenges I had faced were still common throughout the paediatric IBD community. The positive outcomes of the peer support work I was doing, and the growing number of patients I was working with, led me to explore ways to get this information and support to more young patients and families. After teaching myself how to use design software and create age-appropriate medical content, with the support of my son’s medical team I began creating ‘Me (and IBD)’, a colouring journal for young patients with IBD.

I am now an “expert-by-experience” volunteer at Addenbrooke’s Hospital, working in clinic alongside the PIBD team, offering support and information, and working to build a patient-led community. This opportunity to gain further insights into the needs of young IBD patients, both from the perspective of patients and families, and from that of healthcare teams, is proving invaluable.

Tell us about your innovation  

Me (and IBD) is a colouring journal for young people with inflammatory bowel disease (IBD), designed to help them take their first steps on the journey to becoming empowered patients who can live well with chronic disease.

The journal combines engaging activity with gentle learning, encouraging young people to begin to explore and learn about their bodies, minds and IBD. It is personalisable, with opportunities to record thoughts and feelings, facts, and questions. It tackles loneliness and isolation, and other mental health challenges, sharing patient experiences and encouraging conversation and connection with family, friends, and healthcare teams.

I have worked alongside the Paediatric Gastroenterology team at Addenbrooke’s Hospital in Cambridge and a range of other health and education professionals to ensure all content is accurate, up to date, carefully considered and age appropriate.

After a 6-month pilot at Addenbrooke’s hospital, the journal now forms part of standard care there, and with charitable support is now available to all young PIBD patients in Scotland and Ireland.

Why did you apply to join the programme, and what are you most looking forward to?

I applied to join the NHS Patient Entrepreneur Programme because I had the privilege of attending some of their educational events as a mentor last year. These sessions were really interesting, and the networking opportunities were so useful. I recognise a need to grow my confidence, both in my own abilities and in the value of my input as a patient innovator, and I believe this programme will be able to support this through peer-support, pitching practice and opportunities.

I was very excited when I found out that the CEP would be welcoming patients – who better to know what patients really need than patients themselves?

Having begun the journey of patient entrepreneurship alone, I was keen to join and support in shaping this aspect of the programme for the future.

What motivates you? 

My motivation lies in helping to empower young people to become informed and proactive patients, encouraging a positive healthcare journey from youth to adulthood. I passionately believe that early intervention sets the foundation for lifelong wellbeing.

What are your ambitions for the next year?

Over the next year I want to explore ways to capture both quantitative and qualitative data on the impact of the journals, which will help to demonstrate the need for this kind of support to be implemented in further hospitals.

In addition, I am working on ‘Me (and my mind)’, a colouring journal which is not disease specific, but focuses on helping young patients understand the importance of looking after your mind when you are unwell, and what to do if things go wrong.

At the request of adult IBD teams I am exploring the idea of creating an adult version of the journal and am ultimately have plans to expand into other chronic disease areas.

What is your key piece of advice to aspiring patient entrepreneurs?

My advice to aspiring patient entrepreneurs is to be absolutely certain that this is the path you want to take. Being a patient entrepreneur can be an incredible but challenging journey, both in terms of integrating it into your daily life and the emotional vulnerability it entails. When you create something born from very personal and sometimes traumatic past experiences, it becomes far more than just a project, and any negative experiences around that can be painful. Equally, when it can be harder to remember to maintain a balance when it comes to self-care and wellbeing versus seeing your idea happen.

How can we find out more?

Please visit https://www.meandibd.com/ for more information.