Visual transcript of Lowri’s story

The video begins with a woman with blue eyes and long dark hair speaking off camera. She is sat in her living room. Her name is Lowri. 

Lowri enters her daughter’s room. Her daughter’s name is Mia. Mia is asleep in a bed which has a supportive railing across it. Lowri opens the curtains and lowers the railing, getting Mia ready for the day. 

Lowri: I think you need support. Like every person would need support if they are caring for someone, especially 24 seven. You do need to break. You do need some sort of sanity. 

Mia is sitting in a wheelchair. She is a young girl with blond hair and blue eyes. Lowri is standing next to her, smiling whilst holding up colourful fibre-optic lights. Mia looks up at Lowri, making eye contact. 

Mia sits on Lowri’s lap, and they share a hug on the sofa.  

Lowri: Mia is non-verbal but she does show off a lot of love. She really speaks through her eyes and we do have a really special bond.  

Mia is sat in her wheelchair in the kitchen. Lowri screws in Mia’s tube, getting ready for her feed.  

Lowri: When Mia became nil by mouth and was tube fed, I quit working so I could become her full time carer.  

We are now in Mia’s room. Lowri is caring for Mia by drying her hair after a bath, preparing her feed again, dressing her, carrying Mia up the stairs, and flushing Mia’s feeding tube. 

Lowri: From the moment she wakes up to the moment she goes to bed I feed her, dress her, carry her around everywhere, give her a medication, but it doesn’t really stop. 

Lowri puts Mia to bed and closes the bedroom blinds. Lowri goes to bed, her face illuminated by Mia’s monitor. We hear a cry and Lowri opens her eyes to check the monitor. 

Lowri: When she does go to bed, she does have insomnia. So I’ve always got to be alert at night listening out for her.  

It’s daytime. Lowri is working through her daily tasks. She is sitting on the stairs going through applications, she brings in the shopping, stocks up Mia’s feed and checks Mia’s feeding tube inventory.  

Lowri: When I do get a break, when she’s at school, two days a week, I’m always catching up on life admin, doing bits that I can’t do with Mia, you know, food shop for popping to the chemist, making sure that she’s stocked up on a feed. 

Lowri picks Mia up from school. She unstraps Mia from her wheelchair, lifts Mia into the car and lifts the wheelchair into the boot of the car.  

Lowri: The time goes so quickly and before I know it I’ve got to pick her up again, which is a long and lengthy process in itself.  

Lowri is looking down at Mia, smiling affectionately.  

Lowri is finally taking a short break. She stands in the kitchen and looks out the window.  

Lowri: True respite would mean, you know, a night or like a small break, a couple of nights away where Mia is looked after by someone that can care for properly and I can just spend those nights having a full night’s sleep and not having to be woken up because we need time to almost recuperate and gain energy again. 

Lowri is back with Mia. They are in the living room using an eye gaze machine. Lowri holds Mia’s hand and gently strokes it.  

Lowri: While waiting for support or respite, I’ve just got to get on with it and make her the happiest I can, and give her the best care possible. 

The screen fades to white. Purple text appears on screen which reads 

Voiceover: 1 in 5 family carers can’t remember the last time they had a break. Join us in calling for more support for carers. Sense.org.uk/GiveCarersABreak. 

Two dots appear. Orange on the left and purple on the right. The dots spin around the screen then comes together in the centre, forming two hands with the letter S in the middle. This is the Sense logo. Text appears below the logo. 

Voiceover: Sense. No one left out of life. Sense.org.uk 

Carers of disabled family members do an incredible job, but providing round-the-clock care to loved ones without any time out is exhausting.

Like everybody else, carers deserve a break from their responsibilities. 

They need time to rest, reconnect with family and friends and work on other tasks. 
But right now, more than 65% of carers say they’re burnt out or exhausted.

“I would just 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.”

Lowri, full-time carer to Mia. Read Lowri’s story.

How can carers get a break?

In order to take a break from their responsibilities, carers need respite care for the people they care for. 

This could be a few hours support for the person being cared for to do fun activities, or longer care overnight. This means that the disabled person also gets a break, and is properly cared for.

Respite care is offered by local authorities. But many people struggle to access the care they’re entitled to.

A lack of long-term funding, poor information and support and a gap in specialist services is leading families of disabled people to burn out. 

One in five family carers of disabled people can’t remember the last time they had a break. 

We want all family carers to be able to take a break when they need it.  

Show your support for carers
Ruth, a white woman with brown hair and glasses, smiling.

“Accessing respite care is a tough process. You don’t have to do it alone. Don’t be afraid to ask for help.”

Ruth Bennett-Anderson, operations manager at Sense. Find out Ruth’s top tips for accessing respite care.

What we’re calling for

  • Long-term funding from the government for respite care.
  • Consistent information and support around respite care from local authorities. 
  • More awareness of how invaluable carers are, and why respite care is so important.

Stories from carers

A huge thank you to all the carers that helped support our campaign and get the message out across TV, radio, newspapers and social media.

A woman looks up from the book she is reading her son

Laura and Matty

The support Matty receives at Sense enabled Laura to work as a dinner lady at the local secondary school. “Matty’s amazing and loves life. But supporting him is a fulltime job. It can be hard.”
A woman leans on her daughter's wheelchair and both smile at the camera

Julie and Natalie

Julie lives in Ramsey with her husband, Andy, and daughter, Natalie. Natalie attends Sense college which she loves but additional respite gives Julie time to recharge as a carer. “When you get that weekend you cram everything in and on the Monday morning we’re knackered but it’s a good knackered. Sometimes we go away or we’ll go off for a big walk with the dog.”
Three young children surround and hug their mother

Hajara, Talhah and Habiba

Talhah helps out a lot at home, as a young carer for his sister and attends Sense’s siblings and young carers project. Hajara explains, “Now, I know Talhah’s got a support system, an outlet, and he’s able to have fun and be creative and explore different things.”
Two young women sit on a bench in a garden, one with her arm around the other.

Chantel and Madison

“Madison is a fiercely independent child with a pretty strong will. Caring for her requires patience and understanding. The support Sense provides helps us to do things we wouldn’t normally do, like shopping, resting, and catching up with things that normally get neglected.”
A young man and his mother sit holding hands

Morag and Harry

Morag lives in Lincolnshire with her sons Harry, 26, and Edward, 24. “As Harry’s carer, I constantly have to be there for him. I manage all of his support. Respite helps me carry on. The only other option is full-time care, and I’ve never considered that.”
A little girl cuddles her mum

Josie and Paige

“I have to do everything for Paige and make sure I’m constantly watching her. The only time I really get a break is when hospice staff come over to the house for a few hours, to help Paige take a bath. I would love a break. But I am so grateful for my girls and that Paige is still with us.”
A young man and his dad beam at the camera

Saeed and Azhar

“As a family, we care for Azhar 24/7. There’s not enough support for family carers. Over the years we’ve had so many battles securing support. It wears you down and you forget about yourself.”
A young girl stands in a garden with her dog while her mum kneels beside her

Rebecca and Nicola

“As a carer I’m burnt out. There’s no time to recuperate. Respite means a complete break, but there’s always other things that need doing – writing care plans, sorting out meetings. I don’t get any sort of break. Disabled children and families desperately need support.”
A boy smiles as his mum picks him up for a kiss

Carla and Cameron

“Getting help has felt like a real battle. I’ve been repeatedly declined overnight stays, which would help me get a proper night’s sleep. Cameron’s needs are so varied and so changeable, one night he can sleep through no problem then the next he’ll be up multiple times in the night.”

Find out if you’re entitled to respite care

Navigating the social care system can be confusing and isolating. Our information and advice pages are here to help guide you through the process:

You can also contact us for information and advice.