"Some people, including health professionals, don’t understand or recognise that I can be both disabled/cared for and a carer.”
As a long-term wheelchair user due to genetic and neuromuscular conditions and as a carer for her husband – who has a diagnosed mental health condition – Claire identifies as both cared for and a carer and faced a huge barrier to be recognised as such.
After struggling to accept that both she and her husband were unpaid carers for a number of years, Claire was referred to Carers Count and assigned a carer support worker, Becki, who has been on hand throughout the pandemic to ensure that Claire feels supported and has access to the services she needs.
“I think that once I'd accepted that I was a carer, I wanted to reach out and connect with other carers to realise that I'm not alone, that it's ok sometimes to feel overwhelmed, that there is somebody there when you do feel overwhelmed. That’s what Carers Count has done for me.”
I became involved with Carers Count about 2 years ago. I'd heard of them before, but I didn’t think they were there for unpaid carers – I thought they were linked to professional carers. After being referred I was put in touch with Becki who is a mental health carer support worker.
I guess our situation is a little unusual as I’m both a carer, and cared for. Being in a wheelchair myself, I rely on my husband a great deal for my day-to-day care and support. However, my husband has mental health issues, and I also have family members on the autism spectrum whom I also care for. My husband was diagnosed with bipolar two and half years ago, but he struggled for a lot of years beforehand. In our daily lives this means that I care for him in a very different way from how he cares for me.
When my husband cares for me, people see him pushing me in my wheelchair, helping me physically. He helps me wash and brush my hair, personal care – things like that. But I think like a lot of people involved with mental health care I didn’t accept that I was his carer for a lot of years as it’s much less obvious.
I have to help my husband with a lot of his everyday mental health needs and staying safe. Things such as emotional support, functioning, planning and money management. It involves a lot of reminding him of appointments and remembering everyday tasks and making sure that he stays on top of his medication – things like that. I do rely on my husband for my care too to be able to get out and about so when he’s having a bad mental health day, week or sometimes months – he struggles to get out of the house. That means that I’m stuck sometimes as we’re reliant on each other.
Throughout Covid he’s needed me there with him during appointments because of his anxiety, likewise, I need him with me – so it’s vital that we’re both registered and recognised as carers. I’ve not had the additional help of paid carers because of COVID so Carers Count has been a lifeline for me.
"I came across Carers Count for support and help and to reach out to other carers and feel not so alone. You can often feel quite isolated as a carer – especially caring for someone with mental health issues - and I think it’s very different to caring for someone with physical needs - it’s not always so obvious to the outside world.”
Carers Count are there on the end of the phone. They offer advice about everything. Even things I wouldn’t think of. For example, neither myself nor my husband were registered as carers with our GP surgery, and we came across quite a few barriers and ignorance. When I called them and tried to register us both I was told that we can't both be carers for each other, and it was just dismissed. Which is not right. Registering as a carer means that we can both talk to medical staff about each other when one of us isn’t able to get to the phone or is struggling so it’s not just to have it in writing. It’s there because it’s a necessity to be able to care for each other and know what’s going on and what’s being discussed or agreed upon.
Carers Count have been great, they helped write a letter to my GP, they did a lot of promotional work with the GPs to try and help them to recognise carers because that’s a massive thing. We weren’t recognised as carers for a long time. It’s hard being a carer, it is every day and, in many cases, it is 24/7.
I have a lady that supports me called Becki. She’s been there for me when I need her support. She doesn’t push me in any way. She’ll text or message me and ask how I’m doing, if I want to meet do I know about this group that’s happening locally. I’ve done quite a bit via Zoom and WhatsApp with Carers Count throughout the pandemic, probably more than I’d normally be able to. Because of travelling and accessibility issues.
I’ve come across some people that have said to us things like ‘you can’t be a carer, you’re too young’. There’s still a lot of misconceptions out there about what a carer is. My main barrier has been that some people, including health professionals, don’t understand or recognise that I can be both disabled/cared for and a carer.
I’m still in regular contact with Becki. She keeps in touch, checks in with me for a chat, makes suggestions, lets me know about other groups that are running and offers advice on different services and changes that are happening. It’s a minefield and knowing what’s out there if you have the information you can deal with things better – you can have an informed choice.
“Many people who are carers don’t have a voice, so it’s so important to make sure that carers have rights, that we are recognised, that we get the services and support we need that there's an understanding and less ignorance and judgment around that.”
If you are a carer in Kirklees, we’re here to support you.
You can contact us via:
Phone: 0300 012 0231
Or by completing our contact form