Lily’s Transition Story

Seventeen-year-old Lily is a keen aerial artist, a creative spirit with a phenomenal memory. She was diagnosed with epilepsy when she was 14 and also has autism. Despite having eight or nine seizures a day and sometimes needing to go for stay in hospital, she performs on aerial silks, hoop and trapeze – “I love being upside down”, she says. Lily practises thirteen hours a week in a professional studio which focusses on ability rather than disability, and helps manage Lily’s seizures if one happens, even if she is in the air! Her mum Mary describes how Lily’s Roald Dahl Specialist Nurse Becs is helping her move from children’s to adult services, and to alleviate the concerns they all have.

Our Roald Dahl Nurse, Becs, has been amazing. She is full of practical advice. She is a walking medical guru and really supports the whole family. Becs has built up a strong relationship with Lily and Lily trusts Becs implicitly. If Lily has any questions, she will talk to Becs rather than the doctors.   She helps us with managing Lily being under different departments at two different hospitals as that can be challenging and she sorts out prescriptions with the GP. She will also just phone and send an email asking how everything is and I’ve got to say means a lot. Sometimes, when you are dealing with the medical profession, you don’t feel on the same level, whereas with Becs I feel I can say anything and she ‘gets it’. Lily isn’t at school any more I have a budget to manage her education – like running a business, all logged and accounted for – and that will run until she is 25.  I control Lily’s medicine and I watch her take her medicine, that’s not going to change any time soon. The needs don’t go away, the person just gets older and that gets lost. 

The biggest fear for us in all areas of Lily’s situation is the transition to adult services. When you get paediatric support, you get full support, it is very child and family orientated. Having had a little taste of adult services with her in hospital, I feel that changes. The family isn’t as involved and they hospital expects the little adult to be independent in their views. I don’t feel that you can say at 18, off you go. Every person at 18 is so different in terms of their experience and ability to be independent and for us as a family it really scares us. When she came out of intensive care following a seizure last time – she was put into an adult neuro intensive care unit – the experience was traumatic for us.

Becs has been helping prepare for transition, including ensuring Lily has her voice heard within drug consents and accompanying her to adult services appointments. She has stopped seeing the paediatric neurologist and is transitioning to transition consultant – that’s where we are at the moment. When we do see Becs it’s with him. They both came for a home visit, and he’d never done that before. That meeting was only successful because Becs was here.  Donate to our appeal today to help us to establish more Roald Dahl Specialist Nurses like Becs. Donate Here