General Health Articles

Why Carers UK? What drew you to lead the charity as chief executive?

I think as a Chief Executive it’s vital that you are passionate about the cause – in essence it’s your job to ‘sell’ the charity be it to policy makers, funders, the media or carers. So you have to believe it in and understand it. I do have caring experience though didn’t realise it at the time – a familiar story – but I think it was the invisibility, injustice and inequality that carers face that drew me to lead the charity, to want to make a difference to the lives of unpaid carers. And I have a fundamental belief that it is possible to change the world one life at a time!

What challenges do carers face and why do they need support?

There are 5.7 million carers looking after elderly or disabled relatives or friends across the UK today, but unfortunately many of these don’t receive the right support to balance caring responsibilities with their own health and wellbeing.

Many of our carers talk about the weight of responsibility they feel looking after someone who can’t manage without their support, whether this is providing emotional support, physical or intimate care, or practical support with hospital trips, financial and administrative tasks.

Nearly three quarters of carers responding to our State of Caring 2023 survey said that they were continuing to provide care even though they felt they were at breaking point. We heard from carers feeling stressed, anxious, depressed, or lonely, as well as those whose physical health has been affected. Too many carers are having to wait long periods for health treatment – or putting this off because of the demands of their caring role.

Carers are a key part of our health and social care system.  The value of unpaid care in England and Wale is a staggering £162 billion, almost equivalent to a second NHS. It follows, therefore, that measures which enable carers to continue caring – as well as to participate in everyday life – also have huge benefits for society.

Carers are caring for longer hours, with many taking on complex caring roles. Are they under more pressure than ever before?

Data from the Census 2021 shows a distinct increase in the number of people providing substantial care. In fact, the number of people providing over 50 hours of care a week rose by 152,000 to just over 1.5 million.

The UK’s health and social care system would collapse without unpaid carers who are heavily impacted by wider challenges within the sector. In our State of Caring 2023 survey 50% of carers said they are receiving support with their caring roles from family and friends – a higher proportion than those receiving support from healthcare services (19%) and social care services (37%).

Many carers who struggle to access respite care are at breaking point because of this, and on top, many are facing huge pressures caused by the current cost of living crisis. A significant proportion of carers face additional costs associated with caring – from higher energy bills to specialist equipment and dietary requirements. We know that this is creating additional anxiety for carers who are worried about their ability to manage in the future.

What support does Carers UK provide? What benefits does Carers UK membership bring and what feedback do you get from carers using this service?

Our Carers UK website contains a whole range of guides, tools and resources specially developed for carers to help people understand their rights and the support they’re entitled to. This includes financial and practical support, as well as information about balancing work and caring. Carers can also contact our helpline between Monday to Friday (9am to 6pm) on 0808 808 7777 or advice@carersuk.org.

Carers UK is the oldest membership organisation for carers, with a history stretching back to 1965 when the Rev. Mary Webster, who was also a carer, founded the first ever carers' organisation. If you’re a carer you can join as a member for free to receive regular updates by email on the latest carer news and our quarterly members’ magazine. Members also have access to Carers Connect, our online community for carers, and can make a difference by getting involved in our research and campaigns.

Held on Zoom, our online Care for a Cuppa chats offer a space to meet other carers, share experiences and find mutual support. We hold weekly sessions, mostly on Monday afternoons, and a monthly evening session if you can't attend during the daytime.

Whether it’s accessing expert advice or having a friendly person to turn to on a challenging day, carers tell us that the right support can make all the difference.

If someone has become a carer for the first time, where should they start?

If you’re over 18 and provide regular unpaid care for someone, you’re entitled to a carer’s assessment under the Care Act. This is an opportunity to discuss your needs with your local authority and could be the first step towards gaining vital support. Carers should also register with their GP as a carer to be included in conversations and decision making about the person they care for.

If you spend at least 35 hours a week caring for someone with an illness or disability, you may be eligible for financial support via Carer’s Allowance. Information about receiving a carer’s assessment, as well as Carer’s Allowance and additional financial support is available on the Carers UK website.

Our website directory can also enable you to find local carers organisations and sources of support near you. These can provide detailed information on where to find respite care and sitting services, groups for carers in your area and carers’ emergency card schemes. Or you can come and see Carers UK in person at one of our roadshow events.

Are unpaid carers as high on the national agenda as they should be? How has the conversation around carers changed since you started as chief executive 5 years ago?

It’s been an extraordinary journey because, of course, my five years at Carers UK includes the two years of COVID-19 and lockdowns and then we segued seamlessly into the cost of living crisis all of which had, and continue to have, a disproportionate impact on unpaid carers. I would definitely say the conversation has changed and become louder, more angry and more urgent – the imminent General Election, I hope, will provide a platform to talk about carers and the need for social care reform to support them better. We will be launching our manifesto shortly to make clear what carers need over the next five year term, whoever wins. 

Public awareness of unpaid carers is higher than it has ever been, with 48% of the public saying they are more aware of unpaid carers. Carers, on the other hand, do not feel valued and therefore there is a great amount of work still to be done.

There is no hiding from the fact that there are huge health inequalities for unpaid carers who are more likely to be in poor health, to report having problems with their physical mobility and to have a long-term mental health condition compared to those who aren’t caring.

Our 2023 State of Caring survey, the biggest of its kind in the UK, received 10,751 responses from current unpaid carers – showing the strength of unpaid carers’ support for our work and helping us to get their voices heard.

I’m proud of the progress we’ve made through our campaign work influencing decision makers in government. In April millions of people who have unpaid caring responsibilities and are in paid employment will be recognised in law and receive the right to five days unpaid leave through the Carer’s Leave Act 2023, which is something that Carers UK has led the campaign for over literally decades and I’m particularly proud of.

What is Carers UK doing to raise the profile of carers and what would you like to see happen next?

From June 10^th to June 16^th, 2024, we’ll be marking Carers Week, an annual campaign to raise awareness of caring and highlight the challenges unpaid carers face. This year’s theme is ‘Putting Carers on the Map’ and aims to increase the visibility of carers among politicians, employers and throughout our communities.

We’ll also be building on the success of the Carer’s Leave Act providing a stand-alone set of resources to support employers with the implementation of this new law. Our inaugural Future of Work conference on 14 May 2024, chaired by Kirsty Wark, will bring together senior leaders and directors, HR and DEI team members to focus further on the changing landscape for employment.

We won the Creative Shootout this year a competition within the creative industry to use their talents for good. Which means in June this year, we will be launching a major awareness campaign designed by the brilliant winning agency MullenLowe, with donated media spend of £250k from the likes of Sky and the Guardian.

We have a busy year ahead, with an election year, and huge potential to make a difference by ensuring that unpaid carers are top of the agenda for all political parties. Then in 2025, we have our 60^th anniversary – a significant milestone which we plan to use to raise the profile of carers to a different level so watch this space!