Supported through the Waterloo Foundation, SMQB researcher Dr Leandro Junges and collaborators in the CHBH (Professor Andy Bagshaw and Dr Caroline Richards) took part in a patient and public involvement discussion with families and carers responsible for children with epilepsy, ADHD and/or autism.
The team shared their research to date and gathered impressions and feedback on their forward looking plans.
IMSR colleague Dr Caroline Gillett also facilitated a wider discussion around families’ key research priorities and concerns both now and in the future. This highlighted several challenge areas including delayed diagnosis, polypharmacy risks and even accumulative trauma at the level of both child and family unit. A recurring theme was a shocking lack of crosstalk between healthcare services, especially for those with multiple diagnoses. The research team will use the feedback obtained to shape future work and identify routes to impact.
The team are likely to want to speak to more families, carers and children a the project takes shape, so get in touch with Leandro or Caroline if you want to be contacted in future. Many thanks to the families and children who took part and who generously shared their experiences with us.