Research shows family carers left devastated by short breaks crisis

mencap_logoFamilies who care for disabled people save taxpayers £119 billion every year, but tell Mencap that cuts have left them “depressed”, “isolated” and even “suicidal”

8 in 10 people who care for loved ones with a learning disability have told Mencap that they are at breaking point. They feel they can no longer go on caring, because they are exhausted and don’t get the short breaks or respite support they need.

While the government has invested £1.2 billion in short breaks for carers, the use of this money was not ring-fenced. Mencap’s latest research shows that it was not spent on the services that families desperately need, in fact councils across England have cut short breaks services.

The Short Breaks report, launched today by learning disability charity Mencap, reveals the devastating impact that not having a short break can have on families.

Mencap found:

  • More than 8 in 10 families of adults with a learning disability did not receive any short breaks whatsoever this year
  • Over 50% of councils have cut spending on short breaks for families
  • 9 in 10 family carers reported high levels of stress
  • Over half of family carers have given up, or are considering giving up, work
  • 8 out of 10 family carers claim that a lack of short breaks has had a negative impact on their family life
  • 9 in 10 families say it has left them isolated from friends and support networks

The findings outlined in Mencap’s report show that the availability of short breaks services has remained at a critically poor level over the past decade, with no improvement since Mencap launched its Breaking Point campaign in 2003.

Mencap is urging the government to ring-fence the money intended for short breaks, so it is actually spent on these services. They are also calling on councils to intervene early to ensure that no family carer is left to reach breaking point due to a lack of short breaks.

BBC Radio 2 DJ and Mencap ambassador Jo Whiley talks about her own family’s experience:

“My mum and dad support my sister, Frances, full time. She’s in her 40s now. We love her dearly, but I watch my parents deal with sleepless nights, unpredictable behaviour, tantrums – and it’s gruelling. I don’t think people realise just how tough it is, it’s really hard work. It’s absolutely heartbreaking to see families at breaking point because they’re not getting the short breaks, or respite support, that they so desperately need. There needs to be more help out there for carers. For many parents of children and adults with a learning disability, being a carer is not only a full time job, it is their life.”

40-year-old Nicola lives in Newcastle. Her son and daughter require 24-hour care, cannot speak, and are completely dependent on her for every aspect of daily living. Nicola says:

“The stress, lack of social life and pressure on the wider family has made me feel like a failure and close to breaking point. Without short breaks, I lose friends, lose my identity, and become isolated and unable to provide the care my children need.

“We rely on short breaks, but we have been told that my daughter will get far fewer breaks now that she is in adult services. What’s more, there are plans to close both of the local authority short breaks units that my children use. It’s a tough double blow for the whole family. We get very tired and you need something to hold on to because it will be like this for the rest of our lives.”

Emma Harrison, Assistant Director at learning disability charity Mencap, says:

“We are humbled by the love and care that so many families give their loved ones, but they are only human. Without the lifeline of temporary outside care that they can trust, families told us that their physical and mental health is being put at risk. Family carers simply need a break, is that too much to ask? Yet these services continue to be heavily cut at a local level. The government must commit to ring-fencing funding for short breaks and show its support – gratitude, even – to these families.”

For more information and a copy of Mencap’s short breaks report, visit:

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