The Lack of short breaks for family carers

Last week, Sense launched the ‘Give Carers a Break’ campaign.

Family carers are providing round-the-clock care, often without a break. Many feel burnt-out and forgotten. That’s why Sense is calling for greater investment in short break services to support family carers.

We want people to know about this issue. We want the public to recognise the important work of unpaid carers, which benefits the whole of society.

The campaign has resonated with the public, secured national headlines and thousands of people have already signed up to show their support.

I want to share why I’m so passionate about this issue.

Lowri’s story:

Lowri, who looks after her daughter Mia, with he rpartner, Jack, features in our new campaign film.

Mia, who is three years old, has Rett syndrome. She cannot move for herself or speak and is fed through a feeding tube. She attends school three days a week, which Lowri says is the only time she gets to do ‘life admin’ such as the groceries and picking up Mia’s medication from the chemist.

Lowri told Sense that:

“There’s never been a time where I’ve just dropped Mia off at school and been able to relax by myself. I would love to be able to relax and recharge, but I’ve not been able to since Mia was born.

“The only respite I’ve been offered is four hours a month at a charity an hour’s drive away. Once you factor in the time to get there and back, as well as the cost of petrol, it isn’t worth it.

“It’s also too complicated to apply for respite. Some of the application forms to access support I’ve seen are 60 pages long.

“Due to Mia’s insomnia, I don’t get a proper night’s sleep. Just to have overnight respite so I can get a good sleep for once would make a huge difference. I would love a few hours or days where I could relax, and not have to be so alert and constantly thinking about someone’s needs. It would really help me to unwind.”

Family carers benefit wider society:

The support that Lowri provides involves lifting, feeding, physio, medication and communication. It’s vital. But the value of her role meeting social care needs, goes beyond the family, It benefits the wider society

But families like Lowri and Mia are reaching crisis point across the country, and it feels like the government has forgotten them.

According to our research, 1 in 5 family carers can’t remember the last time they had a break.

Short break services devastated by cuts:

Short break services, which should be providing support to families to keep them together, have been devastated by funding cuts. The pandemic and cost of living crisis has made the situation worse for family carers.

It means that many parents and carers around the UK don’t get a break, and their children miss out on opportunities. Caring without a short break can have a significant impact on the health and wellbeing of parents, with over half of those surveyed by the Disabled Children Partnership (DCP) reporting that they have been treated by a GP for depression, anxiety, or stress. Two thirds of family carers told Sense that they are suffering from burnout.

Information and advice is poor:

We also know that information and advice on the support available to families and how to access it, is often poor. And as a result, many families lack an understanding of their entitlement. Assessment processes to secure respite is inconsistent across the county, and families struggle to navigate it. Affordability is an issue, where families are expected to contribute to the cost of respite, and simply don’t have the cash. Families should have the choice between different types of short break that suit their personal situation and benefits the individual.

What needs to change:

The DCP has found there is currently an annual funding gap of £573 million for children’s social care services, including short breaks. That’s £1.6 million of support that disabled children are missing out on every day.

It is unacceptable that disabled children, adults, and their families do not receive the support they need. If this isn’t urgently addressed, it will continue to be a never-ending cycle of disadvantage for them

This is not about asking for children or adults with complex disabilities to be singled out or treated differently. This is asking for fairness. Not only would this improve outcomes for disabled people – it would also deliver important cost-savings for the state. We also know that without carers the health and social care system would collapse completely.

That is why Sense is asking everyone to support our campaign and make sure that people like Lowri and Mia no longer struggle without the support they need.