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Interview: Heléna Herklots, chief executive, Carers UK

08 January 2016

‘It’s so tough for carers, you want to do all you can to make it better’

My dad cared for my mum for quite a few years, and I tried to support them. Dad will always say that she was a really caring woman, and that they cared for each other; so I know that caring is about love and relationship.


Caring is not just recognising the practical things — getting financial support and advice — but all the emotional things, too. Never underestimate those.


I started working with older people in the 1980s, and part of that work was trying to support those who were caring for older people. Over the years, I became concerned about the lack of recognition and support for carers of all ages and in all circumstances, and I wanted to do something about it.


When I talk about what I do, I find that everyone has a story to tell of caring. It’s something to celebrate — that we care for each other. But there are real stresses, because of lack of support and lack of recognition. I’d like to guarantee that every carer who needs help gets the practical, health, and financial support that they and their loved one need.


Carers UK represents, supports, and speaks up for the UK’s 6.5 million unpaid people who care for an older relative, disabled child, or seriously ill partner. We have a national advice line, and an online forum for carers. And we work with many other organisations across the UK to provide support and raise awareness, especially through the annual Carers Week held in June.


If people can talk, they help others to feel not alone. We help carers tell their story to the media, to politicians, through surveys or whatever way suits people. We also help carers to talk to each other. I’ve learned so much about the resilience you need, and how to get what’s needed from social services, through our great online forum, day or night; and we have a growing number of volunteers getting out and about. We’re on social media.


The British haven’t lost the tradition of caring. More people are doing this than ever before: six-and-half million, and the number is growing. The census now asks the question; so we get more accurate information. But it’s more complex: there’s more caring at a distance, people are more mobile, three million carers are trying to work, too. Society has changed a lot, but people are still caring. They are even “sandwich caring” — for [both] children and elderly parents.


The carers’ movement started 50 years ago, led by the Revd Mary Webster. She was baptised an Anglican, but became a Congregationalist minister. As an unmarried daughter, the expectation was that she would look after her elderly parents. She had to cut down on the work she loved doing; her world shrank. She described it as like being under house arrest. So she wrote to the national press, and was inundated with letters from unmarried women who had no financial support, no recognition.


She founded what was then called the National Council for the Single Woman and her Dependents, in 1965, with 300,000 members. She was a remarkable woman: right, astute, good at gathering political support — and she died in 1969 at the age of 46. All the work to bring carers together, on advocacy, getting legislation and legal rights, has been done by this organisation over the years; and now men are members, too.


There’s always been a debate about the term “carer”. Too often, the media use the term to mean “paid care-worker”. The importance of the term is that it gives visibility and recognition, and it’s now enshrined in legal rights for carers, something that Carers UK has worked hard for over many years.


It may be that you’re doing this unpaid for a loved one. Or it may be that you go into caring as a job: some of the most caring people I have met have been home care-workers, and care assistants in care homes. But you can’t continue to provide unpaid care without financial security and protection from financial hardship, both in the short and the long term.


Many people find they have to cut down on their paid work, or give up work altogether, to care for a loved one. There’s a benefit called Carers’ Allowance that you can claim if you are caring for 35 hours or more a week; but it is only £62.10 a week. There needs to be much better financial support to avoid carers’ facing severe financial hardship.


We know it can have a negative effect on your own physical and mental health, and it can be very isolating. By putting the person you look after first, you may no longer have much time to see friends and family, or find time to look after your own health — even just making an appointment to see your GP. It can be very difficult to get a break from caring, which can mean your own health and well-being suffers.


An understanding GP who asks about the carer, as well as the person they’re caring for — that helps. And decent care and support, so you know the person you care for is supported when you’re not there; financial support, if you are not in paid employment; and an understanding employer if you are working, who gives you the flexibility you need to juggle work and care.


If you’re caring for your elderly mum with dementia, and you’re working, you need to know that the domiciliary care workers who come when you’re not there are well-trained and reliable, or you’ll be very anxious. You may not get any provision from the local authority, or it may not be enough, or you’re not assessed as eligible. If you’re struggling to afford private help, that makes the situation worse.


Respite care is incredibly important, especially if you’re caring round the clock. Again, it’s often very difficult to get. A lot of carers haven’t had a day off for years and years and years.


We’re a critical friend of government, speaking truth to power. The Treasury is very difficult to influence. The Department of Health is trying to do the right thing, but they’re constrained by resources. We provide a secretariat for an all-party group on carers. Baroness Pitkeathley is a great friend and advocate. We do feel we have a good group of people around us across Parliament, the media, and business.


There’ll be carers in every congregation; but people don’t always think of themselves as carers. Inviting people to talk about caring and share how it is can be a good first step. It’s important to reach out to carers — perhaps setting up a carers’ group, or supporting a local carers’ organisation. I’d recommend becoming a member of Carers UK so you can keep in touch with all the latest information and advice about caring.


I grew up in a Christian family. Dad was a parish priest. There wasn’t a specific first experience of God. After university, I spent a few months working as a volunteer for the Iona Community, and that developed my own faith, and showed the importance of faith in action.


The name Herklots originates from a village called Herkendorf, near Dresden. The English branch of the family dates from the mid-19th century. When I was a teenager, I wasn’t that keen on the name, as I always had to spell it, but by the time I got married I’d got used to it, and didn’t want to change it.


My parents have been a huge influence. Also my junior-school teacher, Miss Hill, who made learning exciting. I’m certainly influenced and inspired by the people I meet through work.


I love exploring the UK, and, as we’ve recently moved from the south coast to the Welsh borders, we’re enjoying discovering the places and countryside in Powys and Herefordshire. I’m also doing a 50-hill fund-raising challenge for Carers UK’s 50th anniversary year, so travelling and seeing more of the UK than usual.


Favourite sounds? The laughter of friends and family. My husband’s guitar-playing. Test Match Special on the radio: my dad really enjoyed cricket; so I grew up with it in the kitchen. Now my husband and I enjoy it together.


I played cricket with my two older brothers in the garden. I did play for a while, in my thirties, when the local cricket club set up a women’s team. I was opening bat, and fielded in the slips, terrible bowler! It’s really good fun being part of a team sport, and it’s a great sport for women and girls. There’s nothing like spending a sunny day on the cricket field.


Because it’s so tough for carers, you want to do all you can to make it better. I’m angry about the way that vital care services are being cut, putting increasing pressure on them. Our society doesn’t value those who work in care enough, nor those that provide unpaid care, and this has to change.


I’m a fairly happy and optimistic person by nature, and I’m probably happiest when I’ve got the right mix of work that I enjoy, time with family and friends, and some time on my own to reflect. But the nature of leading a charity is that there’s always more that you want to achieve for those we’re here to help. It’s important for us to recognise what we have achieved, and use that to spur us on to do more.


I’m in touch with carers all the time; so I know what a difference we make. What a privilege that is! The fact that things are so difficult does make me angry, and that’s also a spur: we’ve got to make things better.


I’d choose to be locked in a church with Mary Webster. One thing we did this half-centenary year was to get in touch with her cousins, and I did one of my 50-hill climbs with some of her family.


Heléna Herklots was talking to Terence Handley MacMath. www.carersuk.org.uk

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