Freya’s story: How my experience of social care drives me to create change

I grew up with my family in Wiltshire and attended a small mainstream primary school in our village. It was quite an old building, but everything was adapted to make it wheelchair accessible. I was the first-ever disabled pupil there and the teaching staff did everything to include me — I even remember they pulled me up a tower so I could abseil down like everyone else. I then attended secondary school in Calne and I still live there today.

I met good friends at my secondary school, and I was into acting and theatre. The only lesson that was difficult was PE, so I ended up having that as a free lesson. I left in 2017 with good GCSEs and studied creative media, TV, and film production at a local college.   

Throughout my time in education, I had 121 support at school and another carer for personal care at home. I had good, stable relationships with these people who had provided care and support for most of my life; they knew me, and I trusted them.

After leaving college, I was supported with employment opportunities by Wiltshire Employment Support, as well as my Personal Assistant (PA) at the time Faye, but creative opportunities are very limited in our area. So, I started volunteering at Dorothy House, a second-hand furniture store, and am now a manager there now every Sunday. I love the team I work with and the sense of purpose it gives me. Dan, a PA who is funded through DWP supports me with the physical aspect of the role. We have a good, trusting relationship.

I also work part-time at Wiltshire Centre for Independent Living (CIL) as their public relations and administration assistant. This is alongside my voluntary work there on the Pioneer programme, which is all about people with lived experience and organisations coming together to make positive changes through co-production. I really love my work in co-production and our impact is already being recognised, with universities interested in studying our projects and measuring our approach.

I also have another great PA called Oli who is funded through DWP Access to Employment who supports me at the office with writing and meetings.

My journey to independent living was catalysed by a desire to explore my gender identity. It was something which I had been questioning since I was about 15 but had kept at the back of my mind for years. As my relationship with my family deteriorated, I gradually realised I needed my own space.  Wiltshire council organised a live-in care package for me so I could move into an adapted bungalow in 2023. But unfortunately, this meant I lost my PA Faye who supported me for four years.

Today, I’ve had over 30 carers from three different care companies, navigating the difficult balance of trust and support. Often, carers arrive with little knowledge of my needs, making the experience a bit unpredictable for everyone.  They come from all different backgrounds and aren’t necessarily used to a busy young person like me. I manage to stay pretty active though, connecting with friends through gaming, creative projects, and with fellow Pioneers I’ve met through Wiltshire CIL. I would really like a direct payment so I could employ someone who understands me, but at the moment the care agency is the only solution on offer to me.  

My experience—both good and bad—has given me the drive to make things better, not just for myself, but for others. I know that common sense isn’t always enough when it comes to adult social care—real change comes from people who’ve lived it, and I’m excited about making that happen.