This summer, the Care Reform (Scotland) Act was passed, promising carers a legal right to respite care to give them a break. It’s a milestone for carers in Scotland, and should feel like progress.
But, for those of us living the reality of caring, the news felt distant and abstract.
Many of us have spent years campaigning for this change yet, when it finally came, carers like me across Scotland barely had time to notice because this summer we were too busy caring.
While many families were planning day trips and play schemes, parent carers were preparing for something very different: six and a half weeks of full-time care, with little to no statutory support.
Wraparound care for disabled children remains painfully limited across Scotland. The gap in provision isn’t just frustrating – it’s exhausting, isolating and deeply unfair. And so, like every summer, the burden of planning and providing care fell on families.
Once again, I was left to figure out how I was going to juggle work for six weeks alongside the full-time care for my 16-year-old son, who has a profound learning disability and a rare health condition that has left him with an impaired pancreas and dependent on insulin.
This summer, we were allocated just 12 extra hours of support at a playscheme for disabled children to stretch across the entire holiday. That support was welcome, but it was nowhere near enough. This was by no means the care provider’s fault – they do the best they can with limited resources.
So, like many other parent carers, I used three weeks of leave not to recharge but to just survive. I’m considered one of the lucky ones because not everyone has paid leave that they can take to cover the gap in care over the summer.
Under the Carer’s Leave Act 2023, staff with caring responsibilities are entitled to a legal minimum of five unpaid days off per year. In some workplaces, 10 days of paid carer’s leave is considered generous.
But, for those of us trying to bridge a care gap that stretches across entire school holidays, it barely scratches the surface.
The reality is that weeks of intensive care cannot be covered by a handful of days and carers are left to fill that gap, often at great personal cost.
And it is women, especially mothers, who bear the brunt of this. It is mums stepping back, stepping out or burning out just to make sure their children are cared for. This is not a coincidence but a deep-rooted structural issue.
This summer, I continued to work from home and tried to balance my son’s needs alongside Teams meetings and deadlines. Not because I had a choice but because the statutory support wasn’t there.
Caring doesn’t take a summer break. While others wind down, carers are managing complex routines, medical needs and the endless admin for coordinating support. The paperwork doesn’t stop just because school does.
And if you’re caring for a young person on the verge of entering adulthood, summer brings a whole new layer of stress. Guardianship applications, benefit transitions, mental capacity assessments. It’s a minefield of bureaucracy, all landing at the same time as the most intense period of hands-on care.
The system expects carers to keep going but offers little in the way of practical support to help us do so.
Hope versus reality
The Care Reform (Scotland) Act gives carers hope. But hope alone won’t give us the breaks we need. Real change takes time, funding and a system that listens.
If carers are to benefit from this new right, we must be part of the conversation – we know what good support looks like and we know what happens when it’s missing.
The risk of not including carers is not just a policy failure but also a lost opportunity to build something that is better and truly works for families like ours who are just about holding it together for now.
Shubhanna Hussain is a parent carer and partnership development officer at Coalition of Carers in Scotland. She writes in a personal capacity
