REMEMBERING LILYA

Lilya was autistic and frequently wrote and spoke about her autistic experience of the world. The sharing of Lilya's experience continues to have an impact on practitioners working in both health and education.

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Lilya showed a great interest in her sister Mica's teaching career and would often ask her questions about working in a school. One Christmas, Mica gifted Lilya a National Curriculum and Lilya set about writing Individual Education Plans for her Sylvanian Families. Lilya felt particularly inspired about Mica's stories of working in specialist education and believed that, together, they could change the world.

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Sometimes attending school was extraordinarily difficult for Lilya due to sensory experiences, the effort of masking and things changing throughout the day from the plan. This caused her significant anxiety. Some great school staff really helped but fundamentally the environment and curriculum was not designed with neurodivergent children in mind.

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The local Parents and Carers Group for those with  Neurodivergent children was formed by Lilya's mum and Clare Saffin (Trustee) and currently has over 100 members.

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As a patient receiving treatment for acute lymphoblastic leukaemia, Lilya felt overwhelmed with the noise coming from the televisions on her ward. Although the televisions had recently been installed, the design (with speakers at the back) and how they were placed (high up and angled) meant noise bounced off the walls into neighbouring bays. Lilya suggested that the fundraising efforts of her family and school friends was donated to provide headphones and headphone splitters to other patients on her ward, so that families could watch things together. The result made the patient experience more comfortable for all and after her death the hospital wear to care project was launched in several hospitals.

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