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10-16 June 2024

Chelsea Wheeler, 23, from Plymouth, is an unpaid carer for her dad Ron, 52, who has Motor Neurone Disease. 

Paralysed from his waist down, Ron is confined to his bed. He can no longer write and uses an eye gaze to communicate. It all means that Chelsea has to organise everything for her dad during the day while her mum, Karen, is out at work. She makes sure he’s set up for the day, including setting up his catheter bag for his toilet needs. She makes sure that Ron gets his food and medication which have to be taken through a tube. And she needs to be there for his regular appointments with dieticians and nurses, as well as to help him with his cough machine and breathing machine.  

Chelsea said she was never even aware of the terminology “carer” until the age of 15, when her dad was diagnosed two years into his illness. 

She said: “The financial support at the time was bare minimum as I was in full-time education and trying to find a support group aimed at my age group was near enough impossible. In the first couple years of becoming a carer my dad had not received a formal diagnosis and gaining any benefits was difficult so as a family we struggled a bit until we found a diagnosis in London.” 

After realising she was a carer, Chelsea was eventually able to get help from several charities and now attends a local support group for 18 to 25-year-olds run by Improving Lives Plymouth. She said: “I’m very grateful for this group as, in a year of being part of it, I’ve achieved and experienced so much more in life than I would have if not given the support. “ 

She said: “I think it’s important to be recognised as a carer in general as not only does the person with the condition get affected but their families also. Due to the cost of living going up in this day and age most families are unable to pay for live in carers so family members are stepping up to take on this role and many are still within school age. It is not a responsibility we feel forced into as we would do anything for loved ones but to be recognised by the government and other systems would open up several doors to support that many people still don’t know about.” 

With thanks to Chelsea and Carer's Trust for sharing this story.

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