No one expects to become a carer for their loved one. Nor are the associated pressures something people can prepare for. The long days. The financial strain. The emotional toll.
For Norman Phillips, one of the five million people in England who lives this reality every day, caring for his wife Ros has at times felt like an “impossible challenge”.
Ros was diagnosed with secondary progressive multiple sclerosis in 1997, aged 38. For the first 10 years she continued to work, with only minor problems. But then her health took a rapid turn for the worse. Norman was “suddenly faced with a long-term problem”.
He turned to social services for support, only to be told he wasn’t eligible for any.
“They told me that because I had a big job and we owned our home, I wasn’t entitled to any help. I didn’t want them to pay for it, I just wanted some help to provide it,” he says.
“So I tried to provide some of the care myself. I was getting up at 5am to get myself ready for work before helping Ros as best as I could with washing, dressing and getting breakfast.
“Then when I came home from work there was the washing, cleaning and the evening meal.”
Norman was working 50-60 hours a week at this time. Recognising that he was beginning to struggle, he bought care from an agency.
“On the good days people would just come in and do a little bit of housework, but as Ros got worse she needed someone with her all the time,” he says.
“That’s when the financial pressure became horrendous. Some months the cost of care was equivalent to half my salary. I re-mortgaged the house, did all sorts of stuff to try and find the money. In the end it beat me. I got to the point where I couldn’t pay the mortgage anymore.”
The pressure took its toll. Norman collapsed in 2008. “The worry, the strain – what’s going to happen? How am I going to cope? I was walking down the road and the road came up to meet me. I was hospitalised.”
After this episode, Norman took early retirement. As time went on, the couple ran out of money. In 2010, they had to enter a mortgage rescue scheme – where the local housing association buys your house and you switch to paying rent. “That was humiliating,” Norman recalls.
It was only at this point that social services stepped in.
Fast forward six years and things have improved. Norman, now 64, has benefited from the Care Act 2014. The act, which came into force in April last year, placed a legal duty on councils to assess a carer’s need for support.
“The carers’ assessment has much improved since last year,” he says. “Before it was all about keeping you in post, with very little thought to your wellbeing.
“Now it’s much more of an interaction, rather than a ‘take it or leave it offer’. The way I get a respite break, for example, has been tailored to suit Ros and me, not what suits the council.”
“The social workers have been very helpful,” he adds. “But you do hear that it hasn’t worked out that way for other carers and you wonder why – I think it’s the pressure on services.”
Recent research suggests many carers are yet to feel the full benefits of the new legislation. A Carers UK survey of more than 6,000 carers revealed nearly a third (29%) of all those who’d been offered a carer’s assessment, or requested one, waited at least six months to be seen. The percentage was higher (39%) for those supporting people who have a palliative or end-of-life condition, a finding the charity described as “alarming”.
The government admits more needs to be done. It is currently consulting on a new national strategy for carers. This will build on the Care Act and aims to ensure carers are better supported and able to lead a full life outside of their caring responsibilities.
Care minister Alistair Burt says that the government wants to make life “as easy as possible” for people involved in unpaid caring.
He hopes the strategy consultation will produce some “very practical ideas” of where things can be introduced to make a difference.
“The call for evidence is designed to elicit not just the big things but the small things that might make a difference too – signposting, for example.
“I’ve done a couple of roundtables in different parts of the country where people have said not every GP surgery has information on local carers support groups, so it’s those sorts of things.
“There’s no great resource implication to that – it’s about applying an understanding of someone’s situation and ensuring you identify their needs sooner rather than later.”
The strategy will also consider what other countries are doing to support carers, the economic impact of caring, and environmental factors such as employment and living arrangements.
‘Strain on resources’
What it won’t do, at least at this point, is provide clear guidance on timescales for completing carers’ assessments – something that Carers UK are campaigning for.
“We are working with ADASS and the NHS on this to identify what the particular reasons are for blockages and trying to unpick them – but again it’s the problem that yes, you can pick that out in one area, but in another it is working more smoothly,” Burt says.
“So I think before we move to time limits, we need to give the Care Act time to bed in.”
The latest Care Act stocktake found councils predicted the number of carers assessed as being eligible for support is expected to increase by 37%, with a 48% increase in the number of carers receiving council-funded services as a result of the legislation.
Yet, as with so much in adult social care, the strain on resources is hitting hard. The stocktake found that, due to increasing budget pressures, councils’ confidence in meeting the act’s outcomes on carers had reduced. Only 29% councils were confident they had sufficient funding to the implement the act’s duties in 2016-17 and beyond.
Burt says the government is working closely with sector leaders on developing best practice and looking at how resources can be better used throughout adult social care.
But despite financial constraints, he says, these are legal duties that councils simply have to meet.
“The truth is there is a legal right for these assessments and therefore a legal duty on local authorities to respond. Ultimately I as minister have to rely on the fact that local authorities will, as they must, respond to statutory responsibilities.
“So yes, we will monitor this, but we hope overtime local authorities will develop even better ways to recognise and deliver on carers’ rights and responsibilities.
“The carers’ strategy will play a part in that.”
‘Right help, right time’
Norman fears the government’s promise of a new strategy is simply a tactic to “kick everything into the long grass” rather than provide the support carers desperately need now.
“We’ve been through all this – there’s already so much information out there on what carers need, so why do they need to do it again?” he asks.
“Support needs to be more proactive,” he adds. “Organisations might be targeted with seeking out carers but to me, even in our local area, it’s still lip service.
“All the clinical commissioning groups say they are carer friendly, but what are they actually doing about it? What difference are they making?
“The tragedy for Ros and I is had the system worked better for us at the beginning, we may never have got to this situation, but when it starts to crumble, you make so many silly mistakes.
“If you get carers the right help at the right time, that won’t happen.”