Katy’s Story

Katy is 25. Her mum has physical disabilities, a mental health condition and a learning disability. Katy does all of her mum’s personal care, cleaning, washing, shopping and bills. Her mum’s needs have recently increased due to a car accident that her mum was involved in and she is in a lot of pain.

Katy supervises her brother who has learning disabilities in the house to ensure that he is safe, Katy said that her brother can do things independently to a point but he doesn’t have any sense of danger, for example he put a cheese toaster on the carpet and he also nearly cut his finger off. Katy tries to keep her brother healthy; she is trying to get him to stop smoking. Her brother has had anger management sessions because he used to throw furniture around the room. Katy said that she didn’t witness it happening but found the ramifications of his actions difficult to contend with as she had to help mum buy new things and to help tidy up.

Katy also helps her nana around the house by doing the washing and taking her shopping. Her Nana has low level needs.

Growing up

Katy said that the biggest impact on being a young carer was the inability to socialise but there was little impact on Katy because she had grown up with it and she loved her family.

Katy came onto the Action for Children Young Carers project when she was 14, but the team leader Karen Martin thought she became a carer around the age of 5.

Katy can recall making hot drinks and making her brother a beaker up when she was approximately 7 years old, she mentioned that on occasions she would burn herself when she used the kettle. In one particular instance Katy burned her chest by pouring boiling water over herself. Katy also changed her brother’s nappies at a young age.

Katy moved schools and didn’t have any problems because her granddad was around to support the family and her brother had a home help at the time. The School was aware that Katy was a young carer because the move was around the time that Katy joined the young carers’ project at Action for Children. Katy had a social life at school and she didn’t want to be identified as a young carer. At one point Katy was nearly excluded from school over nothing.

Katy says: “Schools are a big issue for other young carers because of their caring responsibilities they miss school, they are late and they do not get time to do their homework. This is sometimes resulting in increased anxiety and self-harming. “

Transition

Katy was very ambitious when she left School; she wanted to do animal care and wanted to start her training. Her mother’s social worker said that if Katy wanted to have this opportunity she and her family’s benefits would be stopped - she would have to become her Mother’s main carer for the rest of her life. Katy felt trapped; she was worried about putting her family through those financial constraints. She decided not to go to college.

Katy stated that her mum’s social worker came to visit her mum whilst Katy was out of the house; the social worker forced her mum to sign some paperwork to say that she didn’t want the support from adult care anymore. Katy’s mum hasn’t had a social worker ever since, Katy said that in some respects she is quite happy about this because the social worker caused her mum a lot of grief because she was always nagging her to do things.

Just as Katy thought that her life was going to start at 18 she felt that her life stopped and she was trapped. She couldn’t sustain the relationships with her peers as she couldn’t go out at night. “As soon as I was 18, I couldn’t go to college, I couldn’t speak to my friends, I couldn’t go around town - my life changed a lot. I didn’t have a personal life. I didn’t socialise at all.”

Support

Action for Children has provided me with support through group work, I was able to get out of the house and meet new friends that were in a similar situation. I started a friendship group. Katy started to volunteer for the young carer project when she turned 18 and has recently stated work as a casual worker which has given her the independence she desired.

When Katy turned 18 the young carer project stopped for her and she had to transition to support from another carers’ charity. Katy recalls that she was able to go on a residential trip to London with her friend who was also receiving support. The break gave her the respite she needed but when the pair returned home they discovered a cheque from the charity for £250, Katy was anxious about this payment and wouldn’t take it into the bank. Her friend did and she had to pay the money back. This caused some ill feelings,

“It was a shock, and it did affect the happiness that the break created, it made my friend poorly as she had ME. I was upset but I just got on with it, it is a worry for any future carers’ breaks grants.”

“I recently went on a residential, we were told that we could drink has much alcohol as we wanted and eat as much, I didn’t think this was very good but I only had a few drinks as I’m not a big drinker but others did drink a lot.”

“J is really good at the carers’ charity, she helps me with forms, things like DLA forms are really complicated and it is good that she is able to help. She was supposed to contact me a while ago because we had gotten in to arrears with the gas and electric, it was a huge worry. I think she was off sick for a while but no one else contacted me.”

“Since starting on the young adult carers’ project, I have met a new friend who is considerably younger than me, we have arranged to go to concerts, shows and we are even going to a music festival. My life is really starting to look up now; I have a job, a social life.”

Adulthood

“The family GP at Brimington Surgery is great, she will speak to me if I want to go to see her about my mum, and she treats us as a whole family. However this is not the same when I take my mum for other Hospital appointments, I just get blanked. My mum doesn’t understand some information; professionals need to speak to me because I have an overarching view over all of my mum’s conditions.”

“The biggest problem that I am facing now is that I want to move closer to my mum because her needs have increased, it is a struggle as the council doesn’t seem to recognise my issue.”

“I still want to support young carers because of my experience, I was asked to attend the Carers’ Reference Board last year to highlight the issues young carers face when accessing services for themselves and for their families. I wasn’t able to contribute anything because it was all focused around Adult care, the facilitators didn’t even try to ask me any questions. No additional group has been set up to focus on the needs of young carers.”

Katy’s reflections and the future

“Being a young carer does have its pitfalls but it is rewarding at the same time. I regret signing my life away to adult care to say that I would be my mum’s full time carer. My mum hasn’t had a social worker for about 3 years now, I would be really happy for my mum to get re-assessed for care, it would be good for me to take some of my caring responsibilities off me but my mum wouldn’t like.”

“I am beginning to know me, not just me as the carer.”

NDCCG Governing Body July 2015 – Patient Story