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Tea and Talking: Paediatric Neurology Patient Engagement Event

Tea and Talk

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On Wednesday 17th May the Philip Farrant lecture hall was transformed into a bright and colourful space for children and young people with epilepsy, and their families, to share their experiences with the paediatric neurology team. Dartford and Gravesham’s Vanguard partnership with Guy’s and St Thomas’ has allowed the team to streamline pathways and implement a number of improvements and the event provided a perfect opportunity to gain feedback from patients who had benefitted from these changes. 

Susan Acott, Dartford and Gravesham’s Chief Executive and Chinwe Ude, (Paediatric Consultant with Epilepsy and Neurology Interest), welcomed the seven enthusiastic families who attended the coffee morning, as well as several members of the clinical and administration team who each come into contact with patients and their families at some point in their treatment journey. The feedback shared was invaluable and will allow staff to continue shaping the services we provide in order to best serve our patients. Another aim of the event was also to encourage and empower patients and their families to have a say and participate in developing the service for our young patients. A service that is fit for purpose, effective and sustainable for present and future needs. 

Sophie Dziwinski, Director of Nursing at Roald Dahl Marvellous Children’s Charity, also attended the event as the charity have funded the new Epilepsy Nurse Specialist post; which is the first role to be sponsored by the charity in Kent and the first to be involved in the Vanguard Programme. Also in attendance were the team from Young Epilepsy UK who currently fund several projects in the community and are now working closely with Dr Ude to find ways of supporting and enhancing the lives of our young patients and their families. 

One patient’s grandfather, a retired GP, commented on how useful he thought the coffee morning had been for his daughter and her six month old child who had recently been diagnosed with a rare form of epilepsy. “Being able to hear more about the links between our doctor, their team and the overall service is really helpful, and meeting other families going through the same thing makes you feel less alone. I wish more events like this had happened while I was still a practising GP!”