The Tookie Superhero: A bespoke medical garment for a child with complex needs
NHS patients and families across the UK face a number of challenges when securing and maintaining enteral feeding lines and devices, which are vital for survival and management of conditions. A major challenge is preventing children and young people (CYP) from pulling and removing their devices. Currently, no such product exists to resolve this clear need. Parents are often forced to develop bespoke solutions which are not fit for purpose, sometimes purchasing expensive online products in an effort to secure their CYP’s feeding lines and fluid bags. These make shift solutions attempt to provide CYP with dignity, quality of life, and reduce unnecessary hospital visits due to infection.
NIHR CYP MedTech collaborated with a company called Tookie Ltd and the gastroenterology team at Sheffield Children’s NHS Foundation Trust to organise clinical focus groups in early 2020 to consider these unmet needs. The groups discussed the design of a wearable medical device to be offered to patients to improve wellbeing and safety. During the focus groups, one family stated that the proposed garments would not suit their son’s highly complex needs.
Tookie committed to producing a bespoke garment for the family. Pioneering 3D body mapping technology was used to map the lines and devices on the patient’s torso, negating any undue emotional stress that the patient would have experienced by encroaching upon his personal space to take repeated physical measurements. These measurements were combined with photo images of the patient to provide accurate marker points during the garment design process. Several design features were developed with maximum input from the family (e.g., embedding neoprene into garment sections to prevent pulling of lines and devices), before a prototype was provided and trialled and a finished garment provided.
The garment has received great praise and feedback from the family, indicating that it is functionally sound, fulfilling their needs, and improving the patient’s quality of life, with only minor aesthetic adjustments required (to be better fitting and easier to adjust).
STAGE OF DEVELOPMENT BEFORE WORKING WITH NIHR CYP MEDTECH
SUPPORT PROVIDED BY NIHR CYP MEDTECH
NIHR CYP MedTech facilitated a collaboration between Tookie and the gastroenterology clinical team at Sheffield Children’s NHS Foundation Trust.
NIHR CYP MedTech supported co-design workshops to explore the challenges families face when securing and maintaining enteral feeding lines and devices in CYP.
NIHR CYP MedTech is providing oversight of the project and managing the project on a day-to-day basis.
NIHR CYP MedTech, Tookie, and the clinical team will continue to work with the family to gather feedback on the garment, incorporating further feedback as required. Indicative of the need for such innovative products for this patient group, the collaboration is gathering required data to produce a Health Economic Impact Assessment of the bespoke Tookie Superhero garment. This will include potential cost savings to patient care and staff time, which will further strengthen the business case for NHS services to adopt these products.
Prior to using a Tookie garment, this patient regularly pulled his lines and devices out which led to infections and otherwise unnecessary hospitalisations. Feedback from the family so far has indicated the garment is preventing this behaviour. The garment has improved the patient’s and family’s overall quality of life. The young patient has also stated that he loves the superhero aesthetic and wearing the garment.
This project was funded by Tookie.
Last updated: 18 May 2022