Last year I was very fortunate to feature in three very exciting projects. They were a step forward in patient advocacy and raising the awareness of sickle cell disorders, clinical trials and invisible disabilities.
2020 Projects
Project #1
First was a feature in Merseyside Care magazine. This magazine serves more than 11 million people who are supported by the Trust. They focus on specialist inpatient and community services that support mental health, learning disabilities, addictions, brain injuries and physical health. This article was about my experience being on a clinical trial and why I chose to be part of one. It was quite daunting writing this as it was going to be my first ever publication but I felt proud to be asked to share my experiences and thoughts.
Project #2
Second was two separate articles that featured in Fight Bladder Cancer UK's magazine. The first was for patients to get to know how a diagnostic radiographer may be part of their care and treatment plan and what to expect when they meet us. This was particularly special as this was released on World Radiography Day. As an Allied Health Professional, people are not always clear about our role, involvement and the clinical aspects to our work. This was a really great opportunity to advertise the profession I love and to help those recently diagnosed get an idea of what to expect.
The second article was linked to a few tips that I used to help me through lockdown #1 when I was shielding for 4 months. (see other posts for more info!)
Project #3
Of all the 2020 projects, this was the one that I was the most hesitant about. I had mixed feelings about as it was a particularly personal and raw project. Parts of it were tongue and cheek (as with all my work) and fun but there were serious aspects to it also. The project was part of the Workforce, Education and Development Service for my NHS Trust, which is such an amazing initiative and I was so very grateful to Patient Voices for the opportunity to work with them and their support in making the digital story. They wrote the blurb for my story and I'm not going to lie, I did cry when I read it!
In addition, I got an opportunity to work in conjunction with staff within Purple Network, LGBTQ+ Network and the Equality and Diversity networks, giving patients a voice and a chance to share our experiences (see final film here).
2021 Project
Project #1
I had the honour of appearing on the discussion panel discussing "The Patient View on Designing Hybrid Decentralised Trials". Due to Covid, many new ways of working in the clinical research space have had to be found, including going remote. This was an opportunity to tell those who organise and plan clinical trials and recruitment what patients think about the decentralised clinical trials and think is important.
It was great to be able to help give my perspective on patients involved in clinical trials and ways to improve their experiences, adapt and change treatments and journeys during Covid. It was also fantastic to come together with so many individuals with an interest in patients some as advocates and others as advisers. Many thanks to The Conference Forum for the opportunity.
I really am looking forward to more opportunities like this and seeing what 2021 can bring (fingers crossed for better than 2020!)
