This is a guest blog from Beau Nieuwenhuijs, Regional Carer Engagement Lead (West of Scotland) on her experiences at the Young Carer Festival – ‘Fest on the Road’.
Ever since I discovered that my thematic focus as a Carer Engagement Lead was young carers I’ve been networking with different organisations that have been doing this work for a long time. Most importantly the young carers team at the Carers Trust Scotland. They’re working on amazing projects and initiatives such as the Going Higher Award for higher education institutions working to support student carers. I’ve attended various events and conferences and at one of them I met Hannah Martin, who organised this year’s amazing edition of the Young Carer Festival – ‘Fest on the Road’. With two locations in Badaguish and Fife, the festival was different from the previous years, but I had never attended a festival like this before so it was all new to me!
Hannah was very welcoming and wanted me to get as much engagement out of the festival as possible, so rather than having an information stall she suggested that I’d help out with different tasks on the day. So I found myself picking litter, helping to clear up afterwards and most memorably overseeing the sumo wrestling activity. I also got a chance to visit the consultation spaces at both festivals and read some of the comments young carers gave about being a young carer. One of the themes was that it’s not always easy for the young carers to get to events like this one or to manage the situation at home:
“Me and my two siblings are here and there is no replacement care in the house, we have no idea what the situation will be like once we get back, we’re coming home to the unknown.”
In the consultation space there was an area dedicated to comments about mental health and the effects of caring as well. Many young people said they were experiencing stress and a lack of sleep as a result of their caring role. This one stayed with me:
“It’s hard because people just expect you to be able to go out with friends but really you have to plan it so friends aren’t as patient and you lose them, so you become quite lonely and feel lost.”
Quotes like this gave me an extra passion to do my job in this field, to make sure that young carers don’t have to experience feelings and situations like these. There were also quotes and comments that left me feeling absolutely inspired, and a bit in awe of the maturity and good heart of these young people. These were some of their thoughts on the most important things about being a young carer:
“That I am able to see life from someone else’s shoes so that I can’t be selfish and stay humble and kind.”
“The most important thing to me about being a young carer is making sure that my family is happy and healthy.”
At both days I was surrounded by hundreds of young people who were jumping on the inflatables, rolling off hills in carts, wrestling in sumo suits and petting Beyoncé the tarantula and peek-a-boo the snake. Generally they were having the best time. I was very conscious that this festival exists to give young carers the opportunity to enjoy themselves and to hang out with their newly found pals, so I didn’t want to be the person to interrupt with questions about dementia. However, I did get chatting to a few people about their lives as young carers and I was amazed by their strength and resilience.
Some of the carers were talking about their schools, and how much still needs to happen in terms of awareness for teachers. We know there are some amazing examples of schools working in partnership with local young carer services to make sure every young carer in school is being identified and supported. However, there is still room for improvement. For instance, a few young people told me their teachers don’t always accept that they can’t finish their homework in time because they have been up all night caring for their relative. For some people the lack of support from their schools was so harmful they felt they had to leave that environment altogether. I know the education sector is under serious pressure, but there’s no excuse for this. Schools need to provide an environment that enables all young people to thrive.
I was told that there’s not just a lack of understanding about young carers issues in schools, this extends to all of the public sector as well. The police could do with more knowledge about young carers as one person illustrated with her experience of her brother, who she’s caring for, being forcefully held down. This was a traumatic experience for both that could have been avoided if the young carer had been listened to. Many young carers have to interact regularly with health and social care services to arrange appropriate support for the person they’re looking after. Unfortunately, they are not always listened to or treated as equal partners in care.
What shocked me as well was that quite often young carers have to deal with being bullied by their peers. Their school mates and friends don’t always understand what it means to be a young carer and the challenges that can come with it. So if they can’t come for a day out because the parent they’re caring for can’t drive them, they’re faced with negative reactions from the ones they call friends. The bullying can also take shape of being mean about the person they’re caring for. It’s for this reason that the ‘Fest on the Road’ was such an amazing experience. It was a space for young people to be surrounded by others that understand exactly what it’s like to be a young carer and it was a chance for them to be like other young people for two days.
The festival left me with many fun memories and a further ignited passion to find young carers of people with dementia, and hear about their experiences of all of this. I want to leave you with one of the comments of a young carer:
“Have patience with yourself. Nobody ever got better overnight. You’ll get wherever you’ll need to be in time. For now, remember that every day that you survive is a step forward, and you have survived many tough days that you thought wouldn’t pass. Be proud of yourself and keep going.”