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Carers Rights: today, tomorrow and in the future

Emily Holzhausen

Most people will care at some point in their lives for a family member or a close friend who is older, chronically ill or is disabled and needs support, but don’t recognise themselves as unpaid carers.

  • Person-centred care
  • Health inequalities
  • Communication and administration

Our Carers Week 2023 research found that 72% of people with experience of caring didn’t identify themselves when they were caring – that’s 19 million people – and many missed out on health and care, financial and other support.

On top of not identifying themselves as unpaid carers, being extremely time poor, focussed on the person needing support, and being baffled by a complex health, social care and social welfare system, it’s easy to see how carers can not know about their rights, why some might matter and how to go about activating them.

That’s what Carers Rights Day is all about. When we established this national day of action, in which thousands of organisations take part, we are focussed on making sure that carers know about their rights and entitlements, busting myths and making carers get what they need. 

Activating carers’ rights in health and care

Focussing on carers’ rights today, it’s critical that carers know what entitlements they have. The NHS Constitution sets out the principle that unpaid carers should be involved and consulted about care, now underlined by the Health and Care Act 2022. GPs can flag unpaid carers on their patient record, potentially leading to a free flu jab and other public health measures. Last year, Carers UK won a crucial right for to carers to be involved at the point of hospital discharge, where appropriate. Just because we change the law it doesn’t mean that carers’ experiences change overnight. 

Carers’ rights in law today

We still need to drive good practice, make sure carers know about their rights and activate them. Our State of Caring 2023 health survey found carers had “less bad” experiences of hospital discharge, but the figures have not moved into the positive. Around half of carers were not being given the information and support to care safely and well – putting both their health and that of the person they were caring for, at risk at time. This has to change as it makes little sense for families, people who use services, but is also a false economy for the NHS.

New carers’ rights coming tomorrow

After years of advocating for rights in the workplace, employees who are unpaid carers will get a new workplace right, from day one, to take up to 5 day unpaid leave to care for someone as well as new rights to request flexible working. We know this makes sense for the family, economy and employers. 600 carers a day give up work to care and 40% of respondents to State of Caring 2023 told us they had given up work to care. 

Carers’ rights tomorrow

We know from carers facing poverty, social exclusion, poor health and facing extra challenges juggling work and care, that we need to do more. We want to see Carer’s Leave be paid in the future, a review of carers’ benefits, better rights to be recognised in the NHS and proper investment in social care.

Carers rights – what you can do now

There’s something everyone can do – help friends, family and colleagues recognise their caring role. Signpost them to support and help them understand their rights. And finally, make sure your employer is making the most of the new forthcoming rights to deliver a positive and supportive culture for unpaid carers.

Biography

Emily leads on Carers UK’s policy and media work and was responsible for Carers UK’s a device services for 15 years. She has secured numerous rights for carers and is currently a Co-Chair of the Care and Support Alliance. She co-chaired the Carers Advisory Group for the Government’s Adult Social Care COVID-19 Taskforce. Emily was awarded an OBE in 2015 for services to carers.