How can social workers support unpaid carers?

Social care professionals can help identify carers and link them up to support servicesSha

Timm Ranson with his son, Danny. ‘I always dread this job. I try and leave it as long as possible.’ Photograph: Timm Ranson/Guardian Witness

“Caring for someone you love is a real privilege fraught with sorrow,” said one contributor to our Guardian Witness project about unpaid caring. “And some self-pity, which is fought off relentlessly. For my wife and I as parents, it is a life sentence. We will be doing this until the day we die.”

Caring is often, by its nature, hidden. Caring for a partner, or parent, or child, can be such a natural extension of the love you feel for them that it becomes hard to separate the two. Particularly with conditions that arrive gradually – the slow progress of dementia or Parkinson’s – there is no clear point at which to make the mental change from “they just need some extra help” to “I am their carer”.

There were 600,000 more unpaid carers in the UK in 2013 than there were in 2001, and with the ageing population on the rise, there are more people than ever in need of care and support. With social care budgets being cut, the burden falls more on relatives and friends to provide essential services. And if carers do not get the help they need, then it can be all too easy for a crisis to develop: burnout is a common problem. So what can social care professionals do to prevent this from happening?

Flexible support

Ming Ho is a freelance writer, who has blogged extensively about her experiences of caring. Her mother started having the symptoms of dementia around a decade ago. “My mum didn’t accept there was anything wrong with her,” she says. “She would never accept outside help if I tried to initiate it and I could never really broach the subject with her.” This lack of awareness on her mother’s part prevented Ho from realising that she had taken on the role of a carer: “I didn’t realise how much of my own life was getting taken over by it.”

Eventually, the situation reached crisis point. “I had to go behind [my mother’s] back and ask her doctor what he could do about it and he gave her a referral which got her a social worker.” The situation was complicated by the fact that Ho was a distance carer, and lived 100 miles away. Meeting the social worker in office hours was not an option.

Ho was, though, “tremendously grateful” to the social worker, who “understood in a very practical way what was needed”, and was prepared to offer advice out of hours. Communicating and offering advice in a flexible way, such as via email, Skype or over the phone, can be essential in supporting people caring from a distance.

Recognising who carers are

It took many years for Ho to recognise she was a carer. But, says Moira Fraser, director of policy and research at the Carers Trust, it is essential for professionals to identify carers as early as possible. Frasersays carers often “focus so much on the person they care for that they don’t ask much for themselves.” The statistics are bleak; 82% of carers report feeling more stressed since they took on their caring role, with 61% facing depression.

“Professionals can really help by being aware of who else is around,”says Fraser. This could be a GP noticing that the partner of a disabled person is having health problems themselves, and pointing them in the direction of care services. Or it could be a social worker identifying that the teenage child of a cancer patient is also providing care, along with their other parent. “Often we think in very stereotypical ways about carers, that there’s one person with care needs and one carer. But often other people are providing care too who need support, and taking a whole family approach is really important.”

Danielle Peers-Holland is 15. Her mum has bipolar, her dad depression, her sister autism spectrum disorder (ASD) and her brother attention deficit hyperactivity disorder (ADHD), and she cares for them. She says: “Being a young carer you’re not able to do a lot of things that other children can do, so I don’t get to go out a lot. I spend a lot of my time looking after the people that I care for.” What is the main problem? “I think school, as I don’t have a chance to revise or study or take homework in.” Again, identification is key – if a young carer is identified as such, then their situation can be explained to their teachers, and they can be supported. Danielle has a social worker who is “a great help, just someone to talk to and get things off your chest”. She also attends a young carers group, where “we get to get some time away, to just mess around and be kids”.

Carers in work

For those carers who are in paid work – around 3 million – combining the two can be an organisational challenge as much as an emotional one. Julian Dorling, who runs a food marketing business, found as much when his mother-in-law developed vascular dementia and started needing care.

“It was absolutely awful for us,” he says. “It had a huge impact on our lives – we run a business from home and it impacted on that, on our income, on absolutely everything.” One of the things he and his partner found hard was the organisational aspect of coping with what needed doing, when carers were coming in, and how to manage the situation. This experience proved to be the impetus for Dorling and his partner to set up a website, For Carers, which aims to solve these organisational problems.

The site, which is currently being trialled, enables you to set up a virtual care circle around someone who needs support. A primary carer can set up the profile, and then add in other people with various levels of ‘permissions’, depending on their role. A calendar enables you to see who is doing what, and carers can create tasks to inform the others in the circle of what needs doing. There is also a profile of the person who needs care, giving information about their background, which helps with the personalisation of care, and to build relationships with paid carers.

Does Dorling think the site can help relieve the burden on carers? “I really do – we’re serious about this, we think it can make a difference.” A key tool on the site is the communication element – people can send messages to others in the care circle, informing them of how the service user was, and letting them know anything that needs to be done, or any potential issues. This could help reduce admin for carers, and allow for more open conversations between different parties. Particularly for large families, with several siblings caring for their parent, this openness can alleviate tension and make everyone feel useful and involved.

Policy and practice

Hope can also come in the form of policy. The newly passed Care Act, which is set to come into force next May, may help carers to access support. For the first time, all carers will be entitled to an assessment of their needs rather than having to ask for one, and potentially have that request turned down. And the Act will remove the current requirement for the care provided to be both regular and substantial; instead, the issue will be whether the person providing care has support needs, or may have them in the future. As Glen Mason, a director in the department of health, commented at a recent social care conference, the Care Act means “carers’ rights are on the same footing as those they care for”.

It is yet to be seen whether an increase in assessments will result in a corresponding increase in support, particularly with diminished local authority budgets. But the type of support offered can vary from practical help at home, to receiving the £61.35 a week carers allowance (this is means-tested, so many do not qualify). One challenge for carers is often getting information about their situation; the kind of help they are entitled to, and how to go about getting it. For carers who are not digitally literate this can prove a real struggle, so there is an important role for care professionals in helping explain the processes involved.

But it doesn’t matter how much information carers can get about the support, if they are not entitled to it. In June, carers around the country went on a virtual strike to protest for more rights, and more support: such as universal access to the carers allowance. For carers who work 50-hour weeks or more, and have little help from local authorities, fundamental change is needed. Access to breaks – whether that’s an afternoon off, or a weekend away, or just an hour or two to get out of the house – is essential like in paid employment. This includes both replacement care for their time away, and funding to be able to go out, as pressure on finances can be so tight that they may not be able to otherwise.

It can seem a woeful picture, and a hard challenge for both carers and professionals to meet. Forty nine per cent of carers have said they didn’t think society cared about them at all.

Ho says that it needed someone to step back from the situation, and tell her she was a carer. Her finances and career suffered. “I’m in the position now of being 48 and effectively going back 10 years and starting again. So that’s had a huge impact on me financially and practically and professionally, and in every way really”. In the end, support came from the social worker. “She was a lifesaver really, for me and my mum, in the last few months before she went into care”.

If you’re a carer, what support has helped you the most? Comment below or tweet us @GdnSocialCare

http://www.theguardian.com/social-care-network/2014/jul/09/social-workers-support-unpaid-carers