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“When I was younger, my story belonged to everyone else”
In 2019, I teamed up with UK charity Headlines Craniofacial Support to survey the membership about their unmet psychological and treatment needs. I had no idea this would be the start of the most powerful and rewarding project I’ve been a part of to date.
Unsurprising to our team, the survey identified a high level of psychological distress among the adult craniosynostosis population and a fragmented experience of healthcare.
Craniosynostosis [kray-ni-oh-sin-os-toh-sis] is a rare and complex condition in which the bones in the skull fuse together too early. This can affect the shape of the head and stop the brain growing normally. Children with craniosynostosis often require surgery in infancy, followed by many medical assessments and interventions as they grow up.
For adults, however, the story is much less clear. Many of today’s adults grew up before craniosynostosis was well recognised, and therefore experienced very different treatment from what we now consider to be the gold standard. Even adults born more recently report a lack of understanding of the condition by health professionals, difficulties accessing services, and confusion about where to seek help.
“It would make me feel more secure and well looked after if my GP knew more about my condition than I do!”
We set out to change this.
We named the project ‘ACCORD’ (Adults with Craniosynostosis: Creating Online Resources to reduce Distress). The word ‘accord’ also means to give voice to someone who has not had their voice heard before.
We established a group of 10 adult representatives with craniosynostosis and brought together the latest research and leading experts. We then called upon the expertise of Fine Rolling Media[NS1] , an award-winning film production agency, to help us co-develop a series of 5 films. Each film focuses on a topic of importance to the adult community.
Will’s story focuses on what it’s like to be seen as ‘different’ and how embracing those differences is “the key to enjoying life”. A film student himself, Will was just as formidable off camera as he was on camera.
“There has been no follow-up. I wouldn’t know who to speak to about any concerns.”
In their film, Nammie and Charlotte open up about their experiences of initiating friendships and romantic relationships. Despite having never met before, they instantly form a bond.
Laura and Louise, firm friends for many years, give us a tour of all the top London sites while discussing how they’ve navigated complex treatment decisions.
In a quiet north London suburb, Zoe discusses what she feels needs to change to better support people with disabilities in the workplace. A force to be reckoned with, Zoe never gives up.
The oldest member of the group, Sally, didn’t discover the name of her condition until she was in her 20s. With many questions still left to be answered, Sally guides us through traumatic medical experiences and the birth of a daughter with suspected craniosynostosis.
To accompany the films, we co-developed a downloadable booklet, which expands on the themes from the films and offers strategies for coping with psychological challenges.
To mark the end of this incredible project, we hosted a private launch at an independent cinema in Oxford. Adults, family members, charity trustees, funders, and clinicians attended in force. After more than a few tears and a lot of thank you’s, we headed out on the town to celebrate.
Premiere film here.
“Talking about my condition helps to spread awareness. Seeing it all on the big screen was just brilliant.”
- Will
“I got the chance to be part of a great team and to help those who are facing the challenges that I have faced.”
- Louise
“Having a rare condition can feel really isolating. Through the ACCORD project, I’ve found connection.”
- Sally
Read more about this project and the research behind it:
Stock NM, Costa B, Wilkinson-Bell K, Culshaw L, Kearney A, Edwards W. Psychological and Physical Health Outcomes in Adults with Craniosynostosis. The Cleft Palate-Craniofacial Journal. 2023; 60(3):257-267. doi: https://doi.org/10.1177/10556656211059966.
Stock NM, Costa B, Bannister W, Ashby C, Matthews N, Hebden L, Melles L, Hilton-Webb Z, Smith S, Kane K, Carter L, Kearney A, Piggott K, Russell C, Wilkinson-Bell K. “When I was Younger, My Story Belonged to Everyone Else”: Co-production of Resources for Adults Living with Craniosynostosis. The Cleft Palate-Craniofacial Journal. 2024; doi: https://doi.org/10.1177/10556656241236580.
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