Carer's Rights Day 2024

For National Carers Rights Day, Elin, Project Support Officer at Yma, shares her experiences as a young carer.

I grew up as a young carer for my big sister. She has a condition called Microlissencephaly, which means she is significantly cognitively and mobility impaired. But more importantly, she loves being with people and has a wicked sense of humour. This is particularly highlighted by her ability to laugh at *just the right moment*.

There are lots of things that she enjoys doing, including going trampolining once a week, enjoying being propelled higher with each bounce.  

She also loves being in water. She has been on a Make a Wish trip to swim with dolphins, enjoys ‘disco baths’ where she unleashes her inner diva (although that doesn't take much encouragement!), and we love going sailing together with RYA Sailability.

Whilst it could be easy to list the things she can't do, my family has always focused on what she can do. A personal favourite memory is going on holiday to Switzerland, zipping down a toboggan run through a forest with her and Dad chasing me. She also had a massive 21st birthday party, where she led a conga line to 'I Would Walk 500 Miles' by the Proclaimers in her blinged up wheelchair.  

The role of a family carer isn’t always constant, and changes over time. As a young carer, my focus was on making sure my sister was having fun and we could spend time together as teenage girls. In the future, there might be a time when I will become more involved in the plans for her care. That uncertainty is constantly looming in some capacity, but luckily right now it feels like a distant bridge to cross.

For the last few years, my sister has been living in residential care. We are extremely grateful for the amazing organisation that supports her. But when the idea of her moving out first came up when I was 15, I found it really difficult to imagine someone else looking after her.

I realise now that this was the best outcome for all of us, especially her. She has a team of dedicated carers who can give her their undivided attention, living with a group of peers. Her wider care team including Speech and Language therapists and Physiotherapists have made a visible difference in her communication skills and physical wellbeing.  

As a carer, it can be easy to forget about yourself. Although I’ve been a carer in some form for most of my life, until I was writing this piece, I wasn’t even aware that there was a day dedicated to carer’s rights. That is why days like this are so important. It helps carers understand the support available to them, and as we know, some people can unexpectedly become carers very quickly if their family or friend’s circumstances change.

The rights carers in Wales are entitled to consist of:

• The right to unpaid carers leave

• The right to request flexible working  

• The right to GP identification as a Carer

• The right and choice to a free Flu Jab  

• The right to protection against discrimination and harassment

• The right to request a Carer’s Assessment for assistance  

• The right to be consulted when the person you care for is discharged from hospital

For more details, please see this site: https://www.carersuk.org/wales/news-and-campaigns/our-campaigns/carers-rights-day/  

Since early 2023, Yma has been working with Marie Curie to evaluate its Dementia Service in West Glamorgan. We have done this through analysing data coming out of the service’s nurse-led Respite and volunteer Companion services in the area, which has informed our reporting to Marie Curie on the impact the service is making and recommendations for enhancing it to maximise positive outcomes. These reports are helping Marie Curie to better understand the steps necessary for scaling and implementing the service in other parts of Wales.

Here are some of our overarching findings:

Through a semi-structured interview framework, we have also conducted interviews with the primary carers of service users and volunteers to produce case studies to tell personal stories about the experience of the service from both sides. This has been particularly rewarding as we have heard at first-hand how the service is helping people to care for their loved ones at home, to meet their own health and wellbeing needs, and providing the opportunity for the volunteers to participate in this valuable work.  

For our team, this work has been especially enriching for understanding the lived experiences of family carers and the good work being done in this space to assist them to meet the challenges they face.  

You can find out more about the service by clicking here: Care and Respite services for Dementia

For an example of its impact click here: West Glamorgan Dementia Care and Respite Service

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