Carolynne & Freya's reality
My name is Carolynne, and I care for my daughter Freya (15). We live in Scotland. Freya lives with severe, complex health and disabilities, so she needs round the clock care provided by nursing staff from the NHS, and myself. Freya receives Child Disability Payments which support with the additional costs for her care, including running lifesaving machines in her room. Freya’s condition means she won’t get better.
When Freya turns 18, she will move to Adult Disability Payments and should receive the health element of Universal Credit, but the government is currently consulting on removing this for young people between the ages of 18-22. I honestly don’t know how we will afford Freya’s care if this support is cut.
The medical equipment that we need for Freya means we have HUGE energy bills. During the energy crisis the cost was predicted to go up from £9,000 a year to £17,000. It was impossible for me to pay this as I work part time. The actor Kate Winslet heard about Freya’s condition and the high bills and started a gofundme for Freya. Many more kind people all over the world donated and it was such a relief but not everyone has this happen for them.
Freya is happy and loves going to school, she loves being in nature. She likes to hear people enjoying themselves around her. She's lovely and she smiles all the time. She's so beautiful. I've done everything I can to provide her with experiences over the years of her life. But when she becomes an adult, Freya will leave school. There'll be nothing for her, so she'll have to be looked after at home.
It is hard to take Freya out, we live on the top of a hill and the garden is sloped so the careers cannot take Freya outside. The experiences such as music therapy have to come to Freya and this all has a cost.
Being a carer is hard. I have to be on call for Freya 24/7 to make all the decisions for her care, I'm not free to do what I want. My life is very restricted to what I can do and I have three other children. They're grown up now, but I've got also got three grandchildren and I want to be part of their lives. They're my family and I live for my family.
If anything should be happening, it should be that our children transitioning into adult services be provided with a more robust continuation of their education and care provision. They should be provided with an income that allows them to be able to live as much of an independent and fulfilling life as possible. Support should also be in place for parents to be able to live their lives too and perhaps to be able to get back into employment or education if that is what they wish. Caring is beautiful with the appropriate support for the Parent/Carer and the Cared for person.