PaCC Rep Profile
Name: Lucy Hughes
Role Within PaCC: PaCC Rep
Parent Carer Experience: I am a parent carer. Our eldest child was diagnosed with autism spectrum condition (ASC) aged five. He is now ten and is in a mainstream primary school with support and will be joining a mainstream secondary. He has sensory needs and has required the input of an occupational therapist to help him be comfortable at school.
He has pathological demand avoidance (PDA) which requires quite different strategies to those which are used for Autism. We have found it challenging that many professionals are not aware of PDA and find we are often educating school and wellbeing staff about what it is, and how things need to be adapted.
We decided to delay applying for an Educational Health and Care Plan (EHCP) until he starts secondary school so we can assess his needs in year seven. A particular challenge has been getting support for his mental health needs, which are viewed by mental health professionals as part of his autism, but by the autism professionals as something they can’t work with because it’s to do with his mental health. So sadly he has ping-ponged around the system for many years.
Our second son is currently part way through being assessed for attention deficit hyperactivity disorder (ADHD) and ASC. Issues were first raised by his teachers when he was five and now aged nine he’s still not been assessed. So I understand very well the frustrations some parents face due to long waiting lists.
Our youngest daughter is seven and neurotypical and I am very aware of the role she plays in our family as a young carer.
I am a wellbeing professional: I am an integrative psychotherapist and specialise in working with neurodiverse young people. I have worked as part of a wellbeing team within a local secondary school and for a local charity as well as in private practice.
My PaCC Experience: I joined PaCC in 2019 as a member of the Steering Group because I am very passionate about advocating for young people and their families to ensure that they are properly supported and served by the National Health Service, and Education Providers. I advocate for:
- Making sure that the process for accessing assessments and support is made much easier for families in Sussex.
- More money is put into all support services for young people with disabilities and their families.
- Stopping people being excluded from services due to their disability. Specifically ensuring that more mental health professionals are able to work with neuro-diverse young people.