Celebrating Carers Week: sharing experiences

This June, Carers Week recognises and celebrates the UK’s hidden workforce of 13.6 million.

Each year, Carers UK bring together a host of organisations to mark Carers Week. The annual campaign, taking place from 6-12 June 2022, raises awareness of caring, highlights the challenges faced by unpaid carers, and recognises the vital contribution they make to not only families, but the wider community. A key part of the campaign is sharing information to allow people to identify themselves as carers and access essential support, and for existing unpaid carers to learn about their rights.

Here, an unpaid carers share their thoughts and experiences of caring, the support available, and what they wish people knew about the role.

Rights

Ruth is 17-years-old and cares for her father who is a wheelchair user. She was first identified as a young carer by her school and local carers centre, and has since worked with Carers Trust Scotland to highlight the importance of young carers’ rights.

In December 2019, I was part of a focus group that I found out about through Young Scot and being a young carer. From there I have gone on to be part of the Young Adult Carers Advisory Group, speak at the launch of an education toolkit, and co-facilitated a consultation workshop on education and sharing my experiences at school as part of last year’s Young Carers Festival. I have been part of the Rights Right Now group which has been such an amazing experience and I have been able to work with other young people on ways we think the government should go about implementing the United Nations Convention on the Rights of the Child (UNCRC).

The thing I wish more people knew about young carers is that being one is nothing to be ashamed of, if anything it is something you should be so proud of as you are developing these amazing life skills and by doing this will be readyfor what comes later in life. I would like to see more support around schools for young carers in Scotland, as for most of us these two things may be the biggest parts of their lives, so the support in both areas should be better connected.

While we want to be able to do it all – school, caring, hobbies, clubs and spending time with friends – sometimes it isn’t possible and for us it has to be caring that becomes the top priority.

Support

Fatimah, who is 17, cares for her father who has musculoskeletal issues and severe anxiety and depression. With the support of Carers Trust Scotland and Action for Children, Fatimah has shifted her mindset around caring and is now preparing to attend university once she finishes school.

I find that [caring] is quite an emotionally taxing role at times, especially with other commitments. However, ever since I found out that I am a young carer and associated with the young carers, I feel as if I’ve learned so much which has changed the way I deal with situations and has opened up a whole route of different types of support that I could get.

Although my caring role hasn’t lessened, through the support of my local carers centre, I have been able to deal with it in a more positive way by meeting people who are in a caring role like me, who understand what I’m going through and are ready to support me.

Through the support of my local carers centre, I have been able to deal with it in a more positive way by meeting people who are in a caring role like me

I feel I can share my apprehensions without being judged which really helps me with my own mental health and positivity. I’ve also found that through all the opportunities I have been given through Carers Trust Scotland and Action for Children, I have been able to raise awareness about what young carers are and immensely improved my own skills such as communication, confidence and empathy.

Meeting my support worker and interacting with other carers changed a lot of how I viewed things. I stopped seeing caring as a cause of stress or a problem that was forced upon me, and started seeing it as something which I should take pride in. It’s all about changing your psyche and taking pride in what you do as a young carer, and appreciating how much you are able to achieve, even while dealing with extra responsibilities that others don’t have to. Today I am happy to say that I have admissions offers for all four medical schools I applied to and a significant part of my interviews focused on caring.

Funding

Martin has cared for his wife who has MS for 27 years and has received support from Carers Network in recent years. One of his main concerns is the lack of financial support available for carers to cover living costs as well as funding for respite and recreational activities.

I had to learn about my caring role along the way and I’m still learning. Carers Network came onto my radar in recent years and I have been given a bit of respite from my everyday caring role, but more generally there is no support.

I think for carers certain recreational activities, for example a gym membership, should be afforded. Exercise is crucial for health but a lot of current facilities are either too expensive or too much of a distance to access. In recent years my wife has required more treatment, especially around December and January when she had a relapse, and that has put more strain on our relationship.

Generally, carers need ways to let off steam because this excessive pressure is going to work against us. Unpaid carers are consistently praised, but at the end of the day we don’t need praise, we need money.

For years we haven’t been able to take a holiday or attend family occasions and it has created isolation, there’s not many chances to enjoy the pleasures of life or just to relax somewhere. I’ve been able to utilise the Carers Network services in recent years, but things like this need to be more accessible and promoted so that more unpaid carers are aware of the help that is available to them.

Connection

Don, who is a vice president at Carers UK, cares for his 45-year-old son, Sam, who has Down’s syndrome. Just over three years ago, Sam moved into a supported living facility, but during the pandemic Don made the decision to bring him home and go back to caring full-time for Sam’s safety.

At Carers UK I’m on the board of trustees and we support them with particular events like Carers Week and act as advisory points for dealing with parliamentary groups, currently we’re looking at the reorganisation of the health and social care white paper published by the government.

About three and a half years ago we managed to find a place for Sam in supported living accommodation with two other young adults with learning disabilities. This is quite close to where I live so I was able to visit him regularly which was very important to us.

There wasn’t a choice, we weren’t going to cut off his social contact with us because he wouldn’t understand why that was necessary, and so I moved him home

At the beginning of the pandemic there wasn’t much communication with care services about what they should do, but then day centres and other activities closed. I knew I had to think about how to protect him. For my family and I, there wasn’t a choice, we weren’t going to cut off his social contact with us because he wouldn’t understand why that was necessary, and so I moved him home.

Eventually Sam was classed as clinically vulnerable and so I would sneak out while he was sleeping in the morning to get provisions and when it was allowed, our family would come and sit outside on the patio to visit us. Now, Sam is back in his supported living, but at the time I think we were caring for each other really. During this time, it was further highlighted how little services connected carers and the people they care for.

I was in a better position than most because I have a supportive family and I’ve had a comfortable career, but I’m very conscious that I’m privileged in this and that it’s not the same for a lot of carers who live with money worries. As things change carers have to be involved in shaping the services that are provided for them.

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