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From Monday 10 to Sunday 16 June 2024, Family Fund will be joining charities and organisations across the UK to raise awareness of the vital roles that carers play during Carers Week 2024. Millions of people are caring for a friend or family member across the country. Yet carer voices often go unheard.
This week, we’re shining a light on parents and carers raising disabled and seriously ill children.
Carers have to work long hours
Our research showed that parents and carers raising disabled children spend an average of 60h per week looking after their child.
“Sometimes I feel like my life ends at 3pm when I pick Lewis up from school. I cram everything that needs doing into the time he’s at school. Though Lewis does things that a typical five-year-old would do, he also does things that a two-year-old would do. We are still toilet training, so Lewis still wears nappies. He doesn’t have any concept of danger so I have to watch him all the time.”
– Kellie, Lewis’ mum
Parents and carers raising disabled or seriously ill children have to face higher expenses, while having round-the-clock caring responsibilities. They are less able to work. This is why Family Fund supports families like Lewis’, with grants to ensure families raising disabled children don’t miss out.
A feeling of isolation
Family Fund’s research also showed that 49% of carers often feel isolated from others.
“When Mason was born, I had to give up work to care for him full time. He needs feeding, changing, interaction, stimulation and needs to attend regular medical appointments. When he was younger, it was isolating. I couldn’t attend baby groups with him as he didn’t gain from them, and they’d just highlight everything that Mason couldn’t do. It’s only when Mason attended specialist school that this changed.”
If you are a parent or carer raising a disabled or seriously ill child, and want to help others feel heard and understood, get in touch by sharing your story today.
Limited respite and support
Our research also showed that, on average, families receive just one hour a week of respite, care and support.
“We care for Aaryan 24/7. Aaryan needs to be bathed and cleaned. He can eat by himself but I would need to cook for him. Even when Aaryan has carers around, we need to be here in case he reacts negatively to something. I care for Aaryan during the day, and my husband takes over at night because Aaryan has sleep apnea. It’s challenging.”
Our research shows that UK families raising disabled, or seriously ill, children and young people are now facing serious financial jeopardy and struggling to survive, due to the scale of the cost-of-living crisis.
