For the estimated 6.5 million unpaid carers in the UK, the emotional, physical and financial toll of looking after a loved one can be enormous. We investigate the UK's hidden care crisis, and ask an expert for her tips on knowing your rights.
"The moral test of government is how that government treats those ... in the shadows of life, the sick, the needy ..."
It's a test that the UK Government has not yet passed. Right now there are thought to be 6.5 million people in the UK caring for those in the shadows, as US politician Hubert Humphrey eloquently put it, and 1.4 million providing 50 hours or more a week of care to an ill, elderly or disabled relative, friend or neighbour.
For those 6.5 million unpaid carers - especially those shouldering the responsibility of round-the-clock care - the emotional, physical and financial toll can be immense.
"Caring in the UK is a hidden issue, which is why it is so important for us to highlight and talk about it," states Emily Holzhausen, director of policy at charity Carers UK.
"Emotionally, caring for someone can be very rewarding and very demanding, and that emotional toll can be exacerbated when you don't have access to the right information about the condition your loved one has and how it affects them.
"People tend to identify themselves first by their relationship - partner, husband, son, daughter, friend - and are often unprepared for the potential impact of caring for someone, or how long it might last."
"No one gave me a job description"
Jacqui recalls how difficult it was to sustain her own health amidst the challenges of caring.
"I had become ill with the stress of it all ... I struggled to maintain a home, be a mum, be a carer and have a career for just over six months before admitting that this situation wasn’t working," she says.
"I gave up work to become a full-time carer but, with that, I had to give up our home as I couldn't afford to keep it with no income coming in. Joshua will always be my beautiful handsome son who I will continue to love, cherish and adore ... but I never got a job description."
Jacqui, 57, found that recognising herself as a carer and coming forward for support made a big difference to her health and well-being. Being able to access assistance, such as a short carer's break through the Local Authority, also helped her balance her own need to rest with that of her youngest son.
In her capacity as a Local Awareness Volunteer for Carers UK, Jacqui recently took part in Carers Week (11-17 June), encouraging GP surgeries in Rutland to reach out to carers with check-ups.
"As a carer it's really important not to neglect your own well-being," she says. "Even if it's too difficult to book a doctor's appointment, there is always somewhere else you can go for support - like a Carers Centre, pharmacist or chemist - to get the help you might need."
What am I entitled to?
The number of unpaid carers in the UK has jumped by 11% over the past ten years, outstripping demographic changes, as state support is cut and more care is provided unpaid in the community.
The closure of long-stay hospitals means people are being discharged back into the community with much more significant conditions requiring higher levels of care. In addition, we are living for longer with these complex conditions.
"The whole landscape of care has changed completely in the last 50 years," confirms Holzhausen.
"Now, more people are combining work and an unpaid caring role. This has a significant knock-on effect in terms of people's health and well-being, and has other costs too, for both families and the state."
Holzhausen is cautiously optimistic about the government's recently announced Carers Action Plan, which outlines short-term steps designed to help carers. However, she feels much more needs to be done.
"This is such an important issue and the government must stop taking carers and their families for granted," she says. "The feedback we receive from carers is that what they really need is more funding for social care and more financial support - and that is missing from the government's Carers Action Plan."
Counting the cost of care
If you are already a part-time or full-time carer, or are considering becoming one, know your rights.
Find out what you are entitled to in terms of practical and financial support, and make sure that you are fully aware of the potential implications for yourself and your family.
"One of our key goals is to really think about whether or not they can juggle work with care," says Holzhausen. "If you know you might end up not being in work for several years, what impact does that have financially? It's very important that people make a conscious, informed decision."
If you earn less than £120 a week (after deductions) and provide 35 hours or more of care a week for somebody who receives benefits - such as an Attendance Allowance or a Personal Independence Payment - then you might be entitled to Carer's Allowance, currently £64.60 a week.
If you are on a very low income, you may also be eligible for a top-up through income support or universal credit.
"People we speak to often talk about the strain of the bureaucracy when applying for state support, and how difficult it can be to find out what you and the person you're caring for are entitled to," says Holzhausen. "It can be emotionally challenging to fill in forms about illness or disability but it's very important from a long-term financial point of view so you can get the right help.
"Other challenges include those that perhaps people don't know about, such as how to support a loved one's nutritional needs. These worries can be easily resolved with good advice and support."
Step out of the shadows
A good place to start is the Carers UK website, where people can access the charity Upfront online tool, tick the aspects of the care they are worried about and receive a tailored information plan.
"First, get informed," advises Holzhausen. "It's really important that potential carers understand the medical condition they will have to deal with and what support they are capable of providing. That way they can work through the decisions and choices they need to make in an informed way.
"Second, find out what you're entitled to and make sure you apply for that support. For example, if you are juggling work and care, your employer may have workplace policies in place that offer support."
Remember, these are big decisions and no one expects you to make them alone.
"If you are a carer and feel as though you need support, you can meet people in a similar situation locally, or alternatively access the Carers UK online forum, where you can connect with carers across the UK," says Holzhausen.
"Bear in mind that, if you've faced a certain issue, quite often someone else has to. That can be incredibly helpful and supportive."
I had to have my pip form back by 26thmay 2018.I got a letter to say might need an assesment that was 6 weeks ago and havent even heard anything for an assesment yet.Has anyone else waited this long...lorraine68855
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.