Carers Rights Day is an annual event to make carers aware of their rights, where to get guidance, and to raise awareness of carers’ needs. We speak directly to one carer about finding support from other parents and this year’s focus: helping carers find their way in local communities.
Today (21 November) charities, support services and organisations will come together to celebrate Carers Rights Day. Every day 6,000 people in the UK become carers, often without the time to plan or seek support and advice.
When Helen’s daughter Maya was born with a rare chromosomal disorder, she didn’t class herself as a carer straight away, she remembers: “I didn’t even know I was a carer; I was just a mum and Maya was a baby; I was someone with questions and there weren’t any answers.”
With your time committed to making sure the person you care for is happy and healthy, it can be difficult to navigate the maze of health and social services which give information.
“I think a hidden symptom of caring is the emotional energy that you use up and that can be more draining than physical energy,” explains Helen.
“The emotional energy you put into ensuring that somebody else has a great day, fighting their corner all of the time can be emotionally draining and have serious effects on mental health.”
Carers Rights Day helps to ensure that carers who spend their time helping someone else are supported themselves.
“It’s a good thing to raise awareness of carers rights, saying ‘you’re a carer, here’s your rights, have a look at them,’ it’s a simple starting point because a lot of carers are suddenly thrown into caring – that can be a huge life shift to suddenly find yourself in that situation.”
Maya is now 21 and Helen has learnt about her rights as a carer over time while managing two lives, rather than just her own.
Before Helen learnt about carers’ rights or even classed herself as a carer, she turned to her community for support, she explains: “We were lucky to have an NSPCC family centre not far from us and they were brilliant, I went along there to one of the mother and baby sessions and it was great.
“It was a bit of an awakening, but it was all down to the staff at the centre, they were fantastic.”
Speaking to other parents of disabled children reassured Helen that she
was not alone and that there was support available. This camaraderie was essential to Helen identifying as a carer and realising she was entitled to support.
“You walk into a room with other mums and dads and siblings of disabled children and suddenly it’s like: ‘wow where have these people been all this time?’” questions Helen. “I realised I’m not alone, there are other people out there – of course there are.”
This sense of community often extends to health and social services who can be your ally.
“When they’re happy to fill out a form for you or write a letter on your behalf it’s reassuring because suddenly you feel like ‘oh, ok I’ve got someone who knows what they’re doing fighting my corner with me’,” emphasises Helen.
Community services and professionals are often essential to exercising your rights as a carer, but this can only be done when you arm yourself with the correct knowledge. With a wealth of information to take in, this can be overwhelming.
“Even now I would say I can’t possibly know everything there is to know,” admits Helen. “I’m still learning; and I’m still learning about my daughter, you just pick it up as you go along when you’re open to it.”
Although it can take time to learn about your rights, it is worth it when you do. For Helen, learning about her rights as a carer meant a boost in confidence when she has had to fight for what her daughter is entitled to.
“Knowledge is power and it does give you confidence to go into a situation knowing that you have the information and you have done the research, that’s always helpful,” says Helen.
The fight to exercise carers rights, and awareness days like Carers Rights Day, wouldn’t be necessary if their rights were common knowledge that everyone was equipped with. Helen believes this also contributes to a stigma around being a carer.
“For me Carers Rights Day is about standing up and saying I’m a carer and we deserve to be treated better,” stresses Helen. “Not by the person next door or the neighbour over the road, but actually by a lot of professionals and by the benefits system.
“Information and communication of that information is definitely a problem.”
Now, with 21 years of experience and knowledge, Helen has learnt that friends and family who have disabled children themselves often have the answers, but if they don’t you should never shy away from seeking answers.
“Ask questions, if you’ve got a question don’t be afraid to ask it,” recommends Helen. “If you get a blank face that’s fine, ask someone else, read magazines, read articles online, go to Citizens Advice.”
Becoming a carer can be life changing, especially if it is without warning or prior experience. Seeking support from your community and learning about what you are entitled to on Carers Rights Day could make daily life a little easier.
For more information on Carers Rights Day, visit Carers UK.