Have a care for the carers forced to give up work

Of Britain’s 6 million carers, one in five have left full-time employment to look after an ailing relative

In 2009 Paula Knight was an assistant marketing director for PricewaterhouseCoopers in London. In her early 40s, Knight’s life was carefree. But during a two-week holiday to New York she took a call from her mother: her dad was in hospital having suffered a stroke. From her mum’s voice she could sense something else was wrong – her mother’s mental illness, paranoid schizophrenia, had returned. Knight had to cut short her holiday and, as it would turn out, her career.

Returning to her parents’ home in Worthing, West Sussex, she found her father seriously ill in hospital and her mother equally unwell at home. “Unfortunately Mum had alienated all of their friends and neighbours because of her suspicion problems. So it was really just me trying to deal with it,” Knight says.

At the same time her biggest work project of the year – of any year – was kicking off. Paula was leading the marketing campaign for PwC’s sustainability team ahead of the UN Climate Conference in Copenhagen. During hospital visits she dashed down corridors and sought out courtyards trying to find a phone signal with which to co-ordinate efforts back in the office.

At home her attempts to set up a workspace were not easy either. A common symptom of paranoid schizophrenia is a distrust of electronic equipment. “I was trying to do work but Mum didn’t like my BlackBerry light flashing and would pull all the wires out of the back of my computer. It was a bit of a nightmare … there wasn’t an awful lot I could do.”

The demographics of the UK and many other western countries are only going in one direction. As one caring organisation indelicately put it, there is a “silver tsunami” approaching. As our population ages, a report (PDF) to the Cabinet Office and Department of Health suggests that the UK will reach a “tipping point” where the number of older people will exceed the availability of family members to provide care.

One in seven working people juggle paid work with caring for a loved one, often at personal cost to themselves – eight in 10 report ill health as a consequence – but also to the Exchequer. A London School of Economics study calculated the public cost of carers leaving work at £1.3bn a year, due in part to lost tax revenues.

Of the 6 million carers in the UK (a number set to rise to 9 million over the next 30 years) one in five of them have had to give up work to care full time. Despite being full of praise for the support she received from PwC – one of very few employers with an active carers support network and carers policy – Knight was one of those one in five. The complexity of her parents’ needs, she felt, were too great. For months she received no home support at all as doctors initially failed to diagnose her mother’s condition.

Struggling to obtain home support is an issue most working carers face. Heléna Herlots, chief executive of the charity Carers UK, reports that rather than matching a growing need, state support is on the decline: “Because of the spending squeeze, services in some areas are being cut-back or charges for services are going up. It was patchy anyway, but at the moment it’s getting worse and the future looks bleak.”

In an age of diversity policies, work-life balance and flexible working, caring seems to have slipped through the net. Few carers feel comfortable talking about their problems at work. “If you have to leave work early because you’re going to see your child’s nativity play, that’s quite an accepted thing”, says Herlots. “If you’re having to leave work early because your elderly mother with dementia has just gone wandering, it’s not so easy to talk about.”

It’s an issue Charlotte Prentice recognises. Two years ago, she was only 20 and working at a children’s nursery in her home town of Barrow-in-Furness when her mother’s early onset dementia became apparent. “It wasn’t something I went round shouting about to be honest out of respect for my mum’s privacy. It’s hard at first to know how people will react.” She pauses, then adds: “But people knowing and understanding about it at work has made it a lot easier in the long run.”

Employers are starting to realise this too. Employers for Carers was launched in 2009, chaired by BT with more than 50 member organisations including PwC, Sainsbury’s and British Gas. The unifying element being that 90% of carers are over 30, “a time when high performers are doing great things”, says Helen Chipchase, disability and carers lead at BT, and a former carer herself. “As employers we need to make sure we create an environment where people can continue to contribute while meeting their needs as a carer.” Although she admits that, as an issue, it is “almost 20 years behind childcare … caring in 2012 feels like the disability agenda circa 1995.”

The BT carers network caters for an insatiable hunger for information among its employees. Running master-classes from experts such as the MS Society and Stroke Association, “the response we get feels as if you’ve let the lid off something”, says Chipchase. “People are so overwhelmed with the responsibilities that come with caring.” A masterclass on dementia was repeated three times, such was the demand, with 400 attendees each time.

Not that all working carers can be helped by information and advice alone. While employers can look into flexible hours and educating line managers, the demands of many jobs make continuing work alongside care seem impossible. However the same could have been said about childcare pre-New Labour’s 1998 UK National Childcare Strategy, which saw employment as key to the debate. Local authorities were tasked to ensure adequate numbers of affordable childcare places, which was swiftly followed by statutory paternity leave, maternity pay, childcare vouchers and – perhaps most crucially of all – wider social acceptance of the link between childcare and employment.

A similar revolution is needed for carers, and there is precedent for that too. In France, the Borloo development plans of 2005 and 2009 aim to double growth in services a la personne – homecare services – through tax incentives and simplified access to services managed by a single agency.

In the UK, meanwhile, there remains a muddy picture of sometimes excellent but always disjointed services. When Karen Weech attempted to run a football coaching company and a marketing consultancy while caring for her mum who had Alzheimer’s, she found “the biggest issue was the fact that there’s not any centralised joined-up support at all. I was the hub, it was up to me to go out and seek support, advice, and brief various services. You have to know where to look, and often you have to really push for things. It didn’t stop my work but it certainly impacted heavily on it.”

Incredibly she had a long fight against the classification of her mother’s illness as a “social condition” not a medical one, in order to qualify for home help. Her local Alzheimer’s Society branch in Scarborough proved invaluable, but almost closed down due to lack of funding. Weech and her sisters raised the money to keep it going.

Under the present system, many carers who work find that, sooner or later, something has to give. The less empathetic might say that it’s what family is for. For many carers, it is this perception that inhibits them from talking about their plight. There’s even a term for it: the “carers burden”. But just as society has progressed in regard to working mothers, so the carers’ right to work needs to be addressed too.

Almost three years on, Paula Knight is building up a portfolio of freelance work. Her mum is “OK”, and her dad is due to have a triple bypass operation soon. That offers them “light at the end of the tunnel”, she says. “I can step back a little bit now and am more able to look for freelance work. I can work at home, fit it around hospital appointments and shopping, all that kind of stuff.” She feels the isolation. She misses being part of a big organisation, the buzz of the office. “But I go up to London every two weeks to see all my friends, to have a bit of a break. I generally come home to find that my parents have gone out in the car when they really shouldn’t have done … But you come to realise that you can’t take care of everything.”

Back to work

Carers often find themselves out of the workforce for several years and struggle to get back in. Or they may be available for part-time work to fit around caring, but are unable to find anything with the flexibility they require. A new initiative, Trading Times, is trying to address this. Set up by Jonathan Collie, it aims to match small employers with local carers looking for flexible or part-time work. With funding from the Design Council’s Living Well With Dementia challenge, it is due to launch online by the end of the year and is seeking funding for expansion.

Previously a healthcare consultant, Collie had no expertise in dementia care before entering the design challenge. “I rang up my local carer centre in Barnet and asked to be introduced to as many carers of family members with dementia as they could. Barnet, one of the largest councils in London, has 350,000 residents and more than 30,000 carers.

“It has 7,500 people that would want to take up employment. And among the small businesses that we engaged there is definitely a reciprocal need for such part-time work. The opportunity is there to match them up.”

Overwhelmed by the need he found, Collie has set aside a long consultancy career to concentrate on what is effectively a recruitment website for carers. “One of our first meetings was with Hounslow Alzheimer’s Society. A lady caring for her mother managed to get respite cover two afternoons a week so she could work behind a counter at a local deli. She said that those two afternoons were an absolute lifeline. It wasn’t so much the money, although the money helped, it was more the fact that she had the opportunity to get out of her care role, engage with people and feel normal again.”