Rachel's story

“In 2017 my father was diagnosed with inoperable pancreatic cancer. I was on maternity leave after having my first child but never returned to work. After going through chemo, we managed to get dad a second opinion from a surgeon at a different hospital who was willing to take the risk of operating. Dad had his spleen, gall bladder, pancreas, and parts of his stomach removed. Seven years on he is still with us, albeit, with Type 3c diabetes, entirely reliant on medication to digest his food, and prone to every infection due to having no spleen. But alive and living a fulfilling life. I am his 'full time carer and entitled to Carer’s Allowance, which then gets deducted from my Universal Credit.

“My eldest daughter, Lillian, was diagnosed with Type 1 diabetes in 2020. My youngest daughter, Rosie was born in 2019 and is on the four-year waiting list for an autism assessment. My girls and I live with my dad, I will receive Disability Living Allowance for Lillian until she is 16, at which point, she will be reviewed to see if she is eligible for PIP.

“The system is crazy, unhelpful and not fit for purpose. I have had to learn to advocate for my dad and my daughters in healthcare, school systems, and our community. I volunteer in my community leading tots groups in church halls as I can be flexible and fit this around my caring responsibilities. Through volunteering with the church I have gained qualifications and skills in first aid, safeguarding, and Makaton. I’m also a Trustee of The Living Rooms, a local charity supporting mental health and wellbeing: 'a place where it's ok to not be ok'. I would like to get more involved campaigning for carers rights and would like to see Carers UK’s work spread in my community.

“I hope my experience can benefit others. When all the plates are balanced and juggled just right, it is a privileged position to be in, caring for loved ones. But all it takes is one thing to go wrong, and it can soon lead to a crisis situation. One of my main roles is keeping dad and Lillian out of hospital. That alone is worth a fortune to our health service.

“On bad days I am made to feel like a drain on society by claiming benefits. Being a carer certainly brings a mixed bag of emotions.”

Rachel and her family