Taking the MSc in Translational Health Sciences: an opportunity to learn the skills and knowledge needed to increase the impact my lived experience could have on the healthcare experiences of others.

In 2019 I had been working as a peer trainer in a mental health recovery college for about a year. I was growing frustrated at the limited way in which lived experience was used in the service, and how I was treated as a patient and a chronically ill person in my daily life. I have lived with a variety of chronic illnesses since my late teens and had worked in health care for about three years. One day I saw a Twitter post from chronic illness activist and filmmaker Jennifer Brea. The post advertised the Rosamund Snow scholarship for patient-led research. This in-memoriam scholarship would fund a patient to continue the tradition of Dr Snow’s excellent lived experience work through completing a Master’s or DPhil with the Nuffield Department of Primary Care Health Sciences. The combination of Jennifer being a reliable source for chronic illness advocacy work and reading about Dr Snow’s work piqued my curiosity and I looked up the Translational Health Sciences Master’s course. Reading the list of modules for the master’s programme I felt like it had been devised directly to suit my interests and I was particularly happy to see a module titled, ‘Patients, Citizens & the Politics of Evidence.’ Taking part in the master’s felt like an opportunity for me to learn the skills and knowledge I would need to increase the impact my lived experience could have on the healthcare experiences of others.

Unfortunately, I did not receive the Rosamund Snow scholarship (that went to two excellent DPhil students Jeremy and Amelia) but I had applied and been accepted to the first cohort of the course. I did not want to lose the opportunity, but I now needed to work out how to pay the course fees. Tuition is a huge barrier stopping chronically ill and disabled people from entering academia. Disability Rights UK reports that nearly half of everyone in poverty is either a disabled person or lives with a disabled person. On average disabled people work fewer hours and are more likely to be low paid. Where many of my fellow students worked full time alongside the part time master’s course, I was only able to work when I had time off between modules. Disabled students may also take longer to complete their studies. This puts us at a disadvantage when an annual fee is part of the tuition cost. I was incredibly privileged to have friends and family who could help me pay for the degree. My college welfare advisor helped me to apply for the limited grants available. Whilst there are scholarships and grants for disabled students in the UK, I could not find any that were willing to support with tuition fees. Most offer to cover the extra costs disabled students face which is something the Disabled Students Allowance (DSA) is supposed to cover. Whilst I received vital equipment through the DSA, most of it did not arrive until after I had completed my first term. This put me at an immediate disadvantage compared to my peers.

Whilst a lot of the issues I faced were structural and related to the wider institutions of the university, most of the support and help came from individuals. Clear communication is a vital element of providing an accessible environment and senior course administrator Robin Beachy went above and beyond to help me solve access problems when they came up. From helping me problem solve how to drop off my equipment for lectures when I don’t qualify for a disabled badge, to supporting me in finding accommodation, I trusted Robin to always try her best to help me navigate the structural barriers I faced as best she could. I had an incredible academic advisor, Jo Crocker, who helped me adapt the way I addressed assignments to fit my way of working. She was understanding and validating, and I felt very comfortable talking to her honestly about my experiences. I also had module tutors who allowed me to use 1:1s to express my emotions around how ableism in my daily life was making it hard for me to concentrate on work, and validated my experiences that rather than insisting our discussions were focused on work. Extensions were accessible when health issues affected my ability to complete assignments and tutors were happy to encourage them if they were the right option. Most importantly, having other chronically ill and disabled students on my course meant I was able to develop peer support with others on the course which was invaluable.

I enjoyed the reading, lectures, and discussions and from the first module I had no doubt that I was a good fit for the course. My marks were good and my passion for learning was reignited. It was this belief that I was in the right place that helped me through more difficult moments.  I completed my first two modules exclusively online due to the Covid-19 pandemic however in December of 2021 I attended Oxford for a lecture week for the first time. This was the most isolated I felt during my studies due to the different approaches people took towards Covid-19 precautions. I had not had Covid at that point and as a person with chronic illnesses I was very worried about how it would affect me. Whilst university policy was to always wear masks in lectures, many of the lecturers and students were taking their masks off and chatting in close proximity during the breaks and in the dining room at lunch time. Everyone followed the policy, but the limitations of that policy left me completely isolated as a disabled person. This was one instance that made me very aware that I was one of only a few ‘patients’ in an environment dominated by clinically and academically trained people.

For the most part however, I have felt welcomed and supported and I am proud to have completed my MSc in Translational Health Sciences. Going forward I recommend that all departments in the university work together towards removing structural barriers for chronically ill and disabled students including high fees and physical access barriers in university buildings. Clear communication is often at the heart of accessibility. It would be useful for the course organisers to talk to chronically ill and disabled students to ensure that the networking and relationship building elements of taking part in a course are accessible to all students. One of the things that made me want to take part in this course was the multi-disciplinary backgrounds that the students came from. This should include patients and chronically ill and disabled people. For this to happen these groups need to be specifically marketed to and given reassurance around access and inclusion. It may also be useful to address the different power relations that exist in the classroom due to the previous experience and backgrounds of students. Mentioning titles and previous qualifications was discouraged but there is still a power difference when one or two students from a patient background are in a room where most people are clinicians. Following my degree, I am continuing to grow my work providing peer support in the chronic illness community. I am also using the knowledge I have gained on managing power relations in my work as an access and inclusion trainer and consultant.