A foot on either side of the patient experience

Our new creative lead Beverley Bryant explains how she’s using her own lived experience of Crohn’s disease and 17-years in the NHS to make sure A Life in a Day reflects real-life experiences of patients.

“It took 18 months to get diagnosed with Crohn’s disease, which isn’t uncommon. I remember a GP telling me it was ‘gastroenteritis’ and ‘not to worry as it was just a small infection’. It was a frightening experience as it felt like I wasn’t being listened to.

I became sick very quickly and had all the symptoms of Crohn’s – the extreme urgency, the rapid weight loss and the bleeding. With my clinical experience, I knew straight away it was serious. 

After I was diagnosed, I went two steps forward, one step back. I was on different treatments which would settle things for around six months to a year. Then the symptoms would start creeping back. I had small tunnels forming in my bowel and skin, which were getting infected. My body was in a constant state of inflammation and infection. It took years to get it under control. The best decision I made was having surgery. I have a stoma bag which means I don’t have to use my bowel anymore.

The impact on patients’ mental health

Looking back, I can see how having a long-term health condition affected my mental health. I remember saying to my husband: ‘I have no hope. What is the point of life, if living is like this?’ It sounds dramatic but when I was tired and in chronic pain, and the symptoms flared up, it did feel like a hopeless situation. 

I can’t remember healthcare professionals talking to me about my mental health. They always spoke to me about my physical symptoms. I think this is an issue for all patients, not just those with Crohn’s disease. There is a lack of understanding of the impact a health condition can have on someone’s emotional wellbeing.

That’s why The Method is creating experiences that look at the psychological and social impact of living with a long-term health condition. Many of the patients who share their stories for A Life in a Day talk about having low confidence and self-esteem. 

In my role as a Creative Lead, I’m responsible for developing experiences for different health conditions. Using my own experience of Crohn’s disease, I will make sure A Life in a Day continues to look at the impact on patients’ mental health.

Using clinical experience to shape the work

I have my clinical experience to dip into in my role at The Method. For example, when working as an emergency medical technician, I saw the physical impact that some treatments and medication have on people with long-term health conditions. I’m looking at how we incorporate this knowledge and information into A Life in a Day experiences.

After I left my frontline role, I took on a support role. I was responsible for involving patients and the public in shaping NHS services. This has given me experience in how best to involve patients in their own healthcare.

Building patient centricity in healthcare

I heard about The Method in 2016 when they advertised for people with lived experience of Crohn’s disease to help them develop a new experience for pharmaceutical professionals. It felt too close to home not to offer my support. I shared my story on video for participants to watch. After that, I supported The Method to develop other experiences and then joined them as a creative lead last month.

Being involved with The Method has had a huge impact on my relationship with Crohn’s disease. It’s helped me to be more honest and open about it. I want to make sure that other people who step forward to share their stories feel it’s a positive experience too. I want them to know that more is being done to help healthcare professionals support patients – not just the development of medication. A Life in a Day experiences are changing how pharmaceutical and healthcare professionals are working with patients.

I’m excited to be involved in the work. Having lived experience of a health condition and a background as a clinician gives me a foot on either side of the patient experience. I feel like I was supposed to be doing this work. It’s happened for a reason.”

Find out more about our work and the experiences we offer.