Care For Carers: Meet Jacquie & Tom

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21st September 2020

As part of our Care For Carers campaign, we want to introduce you to some of our amazing carers and guests, with the hope that their stories inspire you to get behind our campaign and support those who need our help, now more than ever.

Following the emergence of the coronavirus pandemic the UK Government passed the emergency Coronavirus Act, which has allowed Local Authorities to axe their duty of care responsibilities towards the disabled and the elderly. As a result, desperate families have been stripped of valuable home and community support, including respite breaks, at a time when they need it most.

We spoke to Jacquie, who cares for her son Tom, and she was kind enough to share her story with us. Here’s what she told us.


Jacquie’s Story

Jacquie has been caring for her son Tom for the last 26 years. Tom was born blind and has a number of severe behavioural and learning difficulties.

Tom enjoys life, but because he cannot speak, his communication is very limited and he often self-harms and rages at himself. 

Tom has a great family support system. Mum Jacquie describes the family as resilient and understands that for those without that kind of family support, lockdown has been overwhelming. That is not to say that Jacquie and Tom have found lockdown easy.

With a disrupted routine due to lockdown restrictions, Tom was home 24/7 which Jacquie tells us was not kind to him.

“He didn’t understand why he wasn’t able to go out, or why his carers weren’t coming in. He retreated into himself and exhibited a lot more self-harm just because his routine was completely messed up.

It’s quite distressing obviously because he’s my son, you always want the best for your children and to protect them, and it’s hard to see him behave like that. We have to administer medications to calm him down, and it’s sad that he has to go through that.”

With this disruption to Tom’s daily life, caring for Tom has become much harder.

“Most of the time, Tom is a lovely, happy, gregarious young man, he loves contact with people. But when he has a meltdown and when he’s not himself you can’t stop him; he might be skinny but he’s very strong. So it’s hard for everybody involved in his care when he’s like that. And it’s been worse since lockdown.” 

When we asked Jacquie her thoughts on the current isolation guidelines, she told us:

“For Tom that would be no good because he still has his PAs come and take him out when he’s in respite because he needs that regime. I could organise a COVID test before he came. I do understand the isolation period, but I think the testing is more important, because people just can’t isolate for 14 days it’s just not practical anymore.”


If you want to help people like Jacquie get the respite break she and other carers so desperately need, help us raise awareness by sharing our #CareForCarers campaign with your friends, family and social media network.

You can also donate, to help us towards our goal of raising £1 million to support as many carers and their loved ones as possible in accessing respite. Donate today here.

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