Lilya's Legacy #hospitalweartocare

E39 is a children’s and teenagers ward for patients receiving cancer treatment. The ward has a range of facilities such as a play area, teenage room, inpatient beds, a day care unit and facilities for parents.

A young patient, Lilya Coleman Jones was being treated on the ward. As an autistic young person, Lilya was affected by the noise and identified that this was coming from the televisions.

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.

Family and school friends of Lilya had been fundraising in support of her for the NUH Hospital Charity and it was Liliya’s request that the generous donation was used on E39 to help make the ward more Autism inclusive. It was her idea to use the funding to provide headphones and splitters (so that families could watch things together).

Many people on the autism spectrum have difficulty processing everyday sensory information. Any of the senses may be over- or under-sensitive, or both, at different times. These sensory differences can affect behaviour, and can have a profound effect on a person’s life. Too much information can cause stress, anxiety, and possibly physical pain which can result in withdrawal, challenging behaviour or meltdown. When an individual is in hospital receiving care this can be a scary experience especially for a child, in addition if a patient has autism this can make the experience even more overwhelming with the change in environment and sensory stimuli.

Thanks to this generous donation, we are now able to procure headphones, splitters and posters asking patients and their families to use headphones if possible.  Each pair is new and is the patients to keep. We hope this provision will make the patient experience more comfortable to all patients and especially patients with autism as it will reduce the sensory stimulation.

In getting this project up and running, we have liaised with the family at every step of the way regarding their wishes.  We also undertook an Autism Awareness Audit on the ward that was undertaken by Autism East Midlands.

This was extremely valuable as the audit highlighted many good practices that the ward was already doing to make the environment friendly to patients, including patients with autism.