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Worth caring about

As carers we are indispensable to the people we care for and the work we do is a crucial public service, but sadly many of us feel we are not valued by society. Carers UK member Marie McWaters tells us about her experiences and shares her thoughts about improving recognition for carers.

Caring for older,seriously ill or disabled loved ones is something we tend to do out of love and compassion.

It can feel completely natural and therefore unnoticed – simply doing what a parent, child, partner, friend does when someone close to us needs our care.

So natural that we often don’t notice that we’re doing it, until the intensity of the role increases and we reach some kind of crisis.

Noticing and accepting that we’re a carer – that what we’re doing is a specific role that’s worthy of recognition – is the first step towards the support that can keep us going.

And we need our social systems to acknowledge that we’re a carer and that what we’re doing is worthy of recognition and support.

We need others to recognise the value of what we bring not just to our friends or families and communities but to society as a whole.

Without that recognition, we don’t get what we need to enable us to carry on in our vital role.

Whether that’s sufficient income to look after loved ones and live our own lives, the opportunity to combine work and care, or respect from health services and involvement in relevant decision making.

As Marie’s story shows, we all have a role to play not only in recognising ourselves as carers but battling together for greater understanding in our society.

Marie's Story

Recognition

"I’ve just turned 50 and I’ve been caring for more than 30 years. For the first 20 years, I didn’t even know what a carer was, let alone that I was one. I care for my husband, Colin, who has poorly controlled epilepsy which causes him to have multiple seizures a day. As his health has deteriorated my caring role has increased over time.

The first 20 years were very difficult. I had two young children and very little support. I was working part-time as a community support worker and my husband was working as a computer programmer. He was seizing four or five times a night and then getting up and going to work. We went from day to day, working around the seizures and the hospital appointments.

Sleep was a luxury item in our house. My husband’s seizures are mobile, noisy and there’s a lot of banging around. The environment just wasn’t conducive to anyone getting sleep.

Ten years ago everything came to a head when my husband got really poorly. We had a six-month period where he had 30 seizures a day. We were in a cycle where he would sleep, seize and wake over and over. The hospital didn’t know what was wrong and they’d tried all of the available drug therapies.

We were both totally exhausted and we realised we couldn’t carry on working. The kids were at secondary
school and they were struggling. My daughter has said that some days she would go out and she didn’t know whether Colin would be alive when she came back. We moved to be near my parents and they gave me a hand, but there was no other support. Colin was eventually diagnosed with a serious infection.

It was around this time that I recognised myself as a carer. While we were trying to get my husband’s invalidity benefits sorted, social services gave me a leaflet about being a carer. The first paragraph said, ‘Are you caring for somebody?’ I thought, ‘Hang on a minute.’ I read the rest and recognised straight away that I was a carer. Up to that point I thought I was just looking after my family and I just had to deal with it.

Social services quickly started to help with a selfdirected support package. I felt supported from the minute the forms were filled in, but I hadn’t realised how burnt out I was until it got better.

It’s important to identify as a carer, people in our family were suffering – my children were young carers and we just didn’t know. We didn’t even know there was help available. There was a carers centre in a neighbouring town that we had no idea about.

It’s hard for people to understand the pressure and real hardship involved in caring if they’ve never been involved themselves. Isolation is one of the worst things about it. You can feel that no one around you understands what you’re going through.

There’s also a lot of negativity in the media surrounding people on benefits that has hurt carers, too. People will look at us and because my husband isn’t in a wheelchair they don’t see a disability and they think, ‘Why aren’t you at work?’ People don’t realise I have a full time job, it’s giving medication, it’s putting someone in the recovery position, a lot of the time it’s physical nursing. I don’t think most people in society realise that carers are working hard and are really struggling financially just to make ends meet.

The financial strain makes everything so much more difficult. There are added expenses that you don’t even think about, such as extra laundry or additional heating and equipment. We were burning through washing machines because we had a continual cycle of washing. Every time something went a bit wrong, I knew there would be a financial burden coming and either we had to try to find some funding from somewhere or find money within the family.

I now volunteer as a carer representative for the local health and social partnership and I blog as a carer. I think the more we feel empowered to speak out about our experiences as carers, the more people might understand what we do. There’s still such a long way to go before we can feel valued by society.

Recognition Marie

In North Ayrshire we have a Carers Appreciation Card. It’s been great for those times where you need assistance, but just don’t feel like explaining your situation, yet again. It’s a photo ID and states that I am a registered carer. It entitles me to discounts on practical things like car maintenance, hair cuts and exercise classes and fun stuff like cinemas and restaurants. It’s a wee bit of extra support and a wee thanks, too.

I think just feeling appreciated for the work I do as a carer has given me a boost and made things that little bit easier. It’s brilliant that local businesses are supporting carers with discounts. Ideally, I’d like to see pharmacies and large supermarkets come on board as I think that could really make a positive impact on our finances.

Anything that raises awareness of carers and recognises our worth is crucial in changing society’s perception of the role."

A passport to recognition

Carers UK is working in partnership with Carers Trust on a project to produce a Carers Passport toolkit, complementing existing schemes across England and driving more hospitals, employers, education providers, mental health trust and community organisations to set up new schemes.

It is not enough for a Carers Passport to simply identify a carer. A Passport must also set out how that recognition translates to enhanced support. Whether that’s open visiting hours, discounts, involvement in decision making, or preservation of flexible working arrangements.

Thanks to over 1,700 of you who shared your perspectives on Passports earlier this year. Those of you who have had a Passport told us how it prompted greater recognition and openness about your caring role. The toolkit will spread this recognition further when we launch it this autumn. Watch this space!

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