Carers: the right to support

In the wake of the coronavirus pandemic, unpaid carers have been left overworked and undervalued as they continue to take on additional responsibilities to care for their loved ones.

During the pandemic, four out of five carers have taken on additional hours of care due to reduced access to support, and 72 per cent of carers have not had any breaks. Many have said that their own physical health has declined because of their caring role during the pandemic.

Difficult

The pandemic has been a difficult and transformative time for unpaid carers and those they care for,” reveals Emily Holzhausen OBE, director of policy and public affairs at Carers UK. The pressures of the pandemic have left many carers exhausted and worried about how they will be able to continue to care.”

Just one of these carers is Julia who cares for her husband Lawrence. In 2018, Lawrence was diagnosed with Progressive Supranuclear Palsy (PSP), an incurable, progressive brain disease affecting executive function, speech and language, swallowing, vision and movement.

“My husband needs constant support to keep him physically safe, well, and emotionally secure,” explains Julia.

“I used to be a sandwich carer which means I cared for my son who has the respiratory condition cystic fibrosis and is now an adult, and both my parents.

“Even before the pandemic, my husband and I lived in our own little bubble – COVID-19 restrictions became just an extension of the way we live our lives due to PSP.”

While life opens up for much of the population, Lawrence’s condition is deteriorating.

“I am finding it increasingly difficult to care for him on my own,” admits Julia. “I recognise that our caring situation is unsustainable as I have not had a break from caring in over two years. It’s really affecting my mental health.”

Cost

The need for greater support for unpaid carers isn’t a new concept, it is something charities like Carers UK have been campaigning for since their inception, but in situations like Julia’s it is now essential to survival.

“For years, carers have been propping up a chronically underfunded care system at a huge cost to their own personal health, finances and ability to stay in work,” stresses Emily.

“Without additional breaks, funding and investment to return to support services, the stress and challenges during this time could lead to carers reaching a tipping point.”

Carers desperately need support in order to regain their quality of life and continue in these roles.

“We welcome the government’s promise to look at the information, advice and respite needed by carers, but this must come with significant investment in carers’ breaks which are desperately needed,” continues Emily.

“Too often there is a financial penalty for choosing to care for a loved one.”

With better support, Julia would also like to see more acknowledgement of the role carers play in providing quality health and social care in the UK, and wants to see Carer’s Allowance paid at a similar rate to other benefits.

“I’d like to see that the guidelines for good practice that already exist to support unpaid carers are properly implemented – notably identifying carers in the first place, making sure that all GP practices are carer friendly, that carers’ physical and mental health is safeguarded via an annual carers’ health check, and that carers get access to regular, timely respite, secure in the knowledge that their loved ones are well cared for in their absence,” emphasises Julia.

Acknowledgement

The significant cost to the health, finances and work of unpaid carers over the last 10 months has to be acknowledged as a first step to better support. Too often, caring has effects on the health of people taking on the role, leading to stress and exhaustion and needing additional support themselves. Without good health, unpaid carers cannot continue to provide proper support to others.

Julia and Lawrence

“Unpaid carers are tired, exhausted and need more support. We provide billions of pounds a year in unpaid care – shoring up the NHS and social care sector but our own needs are regularly ignored,” admits Julia. “All too often caring has severe health effects on unpaid carers who suffer stress and exhaustion, and it has a severe strain on their relationship with those they care for.

“Carers need brea􀁎s and support for their own wellbeing to prevent us from burning out and to recuperate after an incredibly tough period during the pandemic.”

Rights

Events like Carers Rights Day, taking place annually on 25 November, can ensure carers get the information necessary to see whatever support is available to them.

“Caring without the right information and support can be tough. Carers need to know their rights wherever they are in their caring journey – whether they are in the workplace or in a healthcare setting, and when interacting with professionals or at home,” emphasises Emily. “We want to empower carers with information and support so they can feel confident asking for the support they need.

Emily

“We want carers to know how to challenge things when their rights are being ignored. We also want to bring organisations across the UK together to help carers in their local community know their rights and find out how to get the help and support they are entitled to.”

Days like this give Julia hope, allowing carers to share their stories, speak out about the reality of their lives and be listened to.

“Not enough carers know about their rights and legal entitlements. I want other carers to know what help is available to them,” explains Julia.

She would also encourage other carers to seek support from their GP, social services, friends and family.

“Despite all the daily pressures of unpaid caring, try to carve out a little time each day for yourself, keep up with friends, find the joy in each day: listen to the birds, observe the changing seasons, really enjoy that cup of coffee, go for that walk or run,” recommends Julia. “It’s not a luxury – it’s an essential part of taking care of your mental and physical wellbeing to sustain you in your unpaid caring role.”

Find out more about Carers Rights Day and access advice at www.carersuk.org, by emailing advice@carersuk.org or calling the Carers UK helpline on 0808 808 7777.

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