Tagged / equality diversity and inclusion

BU MSc Student, Sarah Clark, presents MSc dissertation research at BPS Division of Health Psychology Annual Conference 2024

Sarah, who is a BU MSc Student studying Clinical and Developmental Neuropsychology, presented research from her MSc dissertation on Friday 7th June at The BPS Division of Health Psychology Annual Conference 2024.

Supervised by Dr Emily Arden-Close, Sarah’s dissertation delved into the daily experiences of autistic individuals with hypermobile Ehlers-Danlos syndrome (hEDS). This was lived-experience research as Sarah has both conditions herself, and therefore engaging with her study participants carried huge emotional relevance and importance to her personally.

The research found that traits commonly associated with autism, such as the need for routine and structure, significantly aid in planning daily activities and managing EDS symptoms. However, participants also highlighted the psychological challenges of having to adjust meticulously planned routines due to acute pain and fatigue flare-ups. This qualitative research underscores the complexity and challenges faced by those living with both hEDS and autism.

Sarah was diagnosed with hypermobile Ehlers-Danlos syndrome (a rarely diagnosed genetic connective tissue disorder) in February 2020. This diagnosis came after fifteen years of physical symptoms which were misdiagnosed as Emotionally Unstable Personality Disorder. Sarah has an extremely rare co-condition called Median arcuate ligament syndrome (MALS) and has studied for her Masters degree on a prescription liquid-only diet, unable to eat food.

Sarah was diagnosed with autism in May 2022, after realising she is autistic thanks to the lectures on autism on her MSc course at BU!

Acknowledging the transformative impact of formal diagnosis on her life, Sarah has embraced lifestyle changes and effective self-management strategies for her hEDS and various co-morbidities.

Sarah sits as a patient expert in the EDS International Consortium, Psychiatric and Psychological Aspects Working Group, and Sarah presented her BMJ paper, “Help me trust you after my misdiagnosis,” at The EDS Global Learning Conference in Dublin last August.

Alongside being a student here, Sarah also works at BU as a Student Ambassador, Digitial Marketing Ambassador and a member of BU PIER (as a member of the public). Passionate about medical education and raising awareness of rare health conditions, Sarah regularly engages in public awareness, volunteering, and charity fundraising.

Influenced by her own health journey and navigating the complexities of the healthcare system, coupled with Complex PTSD from childhood trauma, Sarah has developed a keen interest in various aspects of the diagnostic journey.

In March 2024, Sarah’s art exhibition “Seeking Meaning in Diagnosis” was held in the Atrium Gallery at BU. Sarah recently won the SUBU Award in the “Outstanding Contribution to Equality” category.

As well as being a patient expert, photographer and blogger Sarah is also a keen yogi and she was featured in Hotpod Yoga’s Move with Purpose Campaign, discussing her late-autism diagnosis.

To learn more about Sarah’s inspirational diagnostic journey – visit her website.

New book about EDI in health and biomed research careers is out!

Dr Ola Thomson of BUBS, People and Organisations, is pleased to announce her new book: “Nurturing equality, diversity and inclusion: Support for research careers in health and biomedicine”. The book is available as open access which means you can read it free of charge via Bristol University Press (Policy Press) – link here: https://bristoluniversitypress.co.uk/nurturing-equality-diversity-and-inclusion.

You can also order a hard copy of the book with 50% off until 21 January using code JAN50 at the checkout.

The book is co-authored with Prof. Rachael Gooberman-Hill of the Elizabeth Blackwell Institute for Health Research at the University of Bristol. The volume provides an overview of the state of EDI in research careers in health and biomedicine in the UK, and offers innovative organisational and individual strategies to nurture diversity in research institutions.

Today’s academic and research institutions recognise the importance of diverse research teams in health and biomedical science, in terms of the business case, social justice and the common good. This ‘go-to’ book familiarises readers with the key equality, diversity and inclusion (EDI) issues in relation to research careers and researcher development. Bringing together the challenges and solutions to EDI matters with an evidence-based approach in one volume, the book offers practical strategies and interventions for academic and research settings. This is an essential guide for equality planning team members, researchers, HRM officers and managers across academia and research.