People caring for a relative are a vital part of the health and social care system - but many feel isolated. A national strategy aims to help by making GPs and community services more carer friendly. Stuart Shepherd reports
After decades in the shadows, carers have been taking their place in the limelight. Consultation on a national strategy to improve the lot of the UK's six million carers, due to be published later this year, drew to a close in mid-January with an event in Leeds attended by prime minister Gordon Brown, health secretary Alan Johnson and around 60 carers.
Care in the UK, a series of programmes designed to accompany the consultation period, ran throughout January on Radio 4. Young carers, social care assessments, dementia and the cost of care were among the issues examined.
With figures from last September's Carers UK and Leeds University survey of the value of unpaid care (estimated at£87bn a year) receiving much attention, the Radio 4 show You and Yours launched an interactive care calculator. This gave listeners an idea of their social care entitlement and what the personal contributions might cost. The Care in the UK series was due to end with an audience putting questions to the social care minister Ivan Lewis.
A£5m contract for developing the expert carers programme to provide training to help carers take greater control over their health and the health of those they care for has also been awarded. If you ask them, though, many carers will tell you that they are already experts in the condition of the person they care for. And whether they are a carer to a parent with dementia or for a child with learning difficulties (not forgetting, of course, the responsibilities of the 175,000 carers under the age of 18), the range of their responsibilities is huge.
The recent media spotlight on the circumstances of care and the carer is in stark contrast to the isolation and lack of recognition carers more frequently report. On too many occasions professionals from both health and social care either fail to consult with them or disregard their contribution when they do.
"I think the NHS is very weak on carers. They often feel invisible, the forgotten part of the care equation," says Carers UK chief executive Imelda Redmond. "The NHS talks about patients constantly, but it is hard to get even an inroad to any real understanding of carers' needs."
The need for information - about local support services, basic levels of entitlement and so on - comes up repeatedly in surveys as a key priority for carers. While GPs currently get quality and outcomes framework points for holding a register of carers, Ms Redmond would like to see them doing more.
"The approach to people on the carers register should be different. If they need an appointment at a certain time to fit in with caring responsibilities, they shouldn't be told that the doctor doesn't book that far ahead. And a carer who is ill ought, where feasible, to be entitled to a home visit," she says.
At the moment there is little tailoring of services to ensure accessibility for carers and the cared for, Ms Redmond adds. Priority should be given when necessary, for instance to the daughter or son of a parent with dementia, for whom sitting in a GP waiting room is a non-starter.
"We still hear of people getting a phone call to say their mum is being sent home from hospital, after mum has said they will look after her. But for all the hospital knows, that daughter or son could be hundreds of miles away, already looking after a disabled child of their own. The NHS ought to be involving carers in discharge planning."
If carers across the UK were to down tools tomorrow, health and social care systems would collapse. But one thing policy makers can rely on is that it will never happen. Carers give up work and cut themselves off from society with little thought for themselves, often not identifying the role they assume as anything other than being the wife, mum or son of the person they are caring for.
However, the impact that caring has on an unpaid carer - the lifting, the sleeplessness, the stress - can bring even the hardiest soul to a grinding halt. And for a carer, ending up in hospital themselves is a double bind. There are many stories of carers on an allowance of£48 a week going home after surgery to be faced with a bill for respite care for their partner of hundreds of pounds - the equivalent for an employed person of an invoice for tens of thousands.
"I have had to go into hospital several times myself," says Linda, who has been caring for her husband Phillip for the past 17 years. "Recently, having already been booked in, I had to turn down an operation because the trust wanted me to have it not locally but somewhere else miles away. This meant a delay and me having to organise more care for Phillip from my bed. The nurses didn't see helping with that as their responsibility."
The Alzheimer's Society estimates that more than 500,000 family members currently act as primary carers to people with dementia. There is concern that with the criteria for social care services being ratcheted up by local authorities, many are being left to cope on their own, with help arriving only when a crisis is reached. This escalating burden inevitably exacts a toll on the health of carers.
"We are hopeful that the new carers strategy will say something about the development of planned respite and short-break services for people with dementia," says Alzheimer's Society head of policy and campaigns Andrew Chidgey. "The NHS needs to recognise the significance of carers and support them to maintain their well-being and quality of life. This could be a very positive feature of practice-based commissioning and a major part of where we are all trying to get with policy, helping carers and the cared-for to remain independent and at home for as long possible."
Anybody providing regular and substantial care to a person subject to the Mental Health Act care programme approach is, according to standard six of the mental health national service framework, entitled to an annual carers assessment and their own written care plan. In practice however it would seem that at best this is sparsely implemented.
"I don't actually know of any carers who have ever been offered any kind of respite support but I'm sure a few of them would appreciate it," says Kim Clark, carers support service manager at Harlow Mind. "When it is done, the carer, as I understand it, might be offered the chance to attend support meetings and other groups provided by the mental health trust. For example one woman carer was given access to a local gym each week to help her cope with her stress."
Harlow Mind runs its carer support service thanks to Big Lottery community funding and can provide its clients with short-term counselling, monthly support groups, advocacy and telephone support. "We can help our GPs with the load and give anxious and worried carers the kind of time they find hard to spare," says Ms Clark. "But referrals seem to depend on the GP and how sympathetic they are to mental health issues. Most of the people I see come from the caseloads of just one or two practices."
Many carers do not describe themselves as carers - often to their detriment.
"If you are supporting a relative or a friend you don't immediately make the connection," says Anne Roberts, chief executive of carer support charity Crossroads. "It is important from the point of diagnosis onwards that people in this position are helped to see the impact it has on them. The NHS has a key leadership role at this stage and, when the condition changes, in signposting people to the information they need."
She sees Gloucestershire primary care trust as an example of robust joint agency/carer's strategy including recognition, well-being, respite and preparing for emergencies. Assistant director of patient and community involvement at the PCT Becky Parish says: "The strategy is underpinned by our commitment to carers, their direct involvement and most importantly their monitoring of our performance against it."
For an NHS organisation, there is more to this than duty: it can also be an investment. People are most likely to become a carer between the ages of 45 and 59, the most productive employment years. Around 80 per cent of carers are of working age. One in five has given up work to provide care.
Many organisations acknowledge that the figure quoted for the number of carers in the UK (six million) is almost certain to be inaccurate.
"People won't always identify themselves as carers," says Alison Brock, carer recognition worker for a multi-agency project led by Surrey PCT, with local authority and carer forum partners. "They do it out of loyalty to those they care for, because they are reluctant to admit to needing help, or because they think a carers assessment looks at how well they care, not what support they might be entitled to."
Central to the project is the drive to make GP practices and community staff more carer friendly, thinking about who their carers are, what they do and the impact it might have on their health.
"It is becoming clearer that it is no good waiting for a carer to put themselves forward. They need to be especially targeted at times of change, often those periods when the risks to their health are highest and they are coming in to the practice regularly," says Ms Brock. "What we need to do is to make sure the surgeries are informed about all the carer support services that they can tap in to and how to get this across better. We need websites for the GPs and posters that get carers thinking about their needs, not just those of the cared for."
Twelve years ago Alan gave up his job as headteacher at a Suffolk primary school to take on round-the-clock care of his wife Christine.
Christine was diagnosed with Parkinson's disease at 34. Now, apart from the few hours a week when Crossroads support workers come, she relies on Alan to wash, dress and feed her, help her move around and to use the toilet.
Their GP suggested that the National Hospital for Neurology and Neurosurgery in London could offer some of the best care, plus access to new interventions. This has proved to be the case, but at times it has also meant that Christine and Alan have missed out on services closer to home.
"The district neurological support nurse for the newly diagnosed didn't know about us. She could have pointed us towards other support, but I only heard about her after five years when it was too late. Our GP had never heard of her either," says Alan.
"It was the same with speech therapy. We went to London every other day for a fortnight to get it because although I'd discovered there was a service at our nearest hospital, 16 miles away, it was only being offered to us as a favour."
He goes on: "I don't think it would be beyond someone to compile a central resource or make an alphabetically indexed book of services available locally for carers and the cared for with various conditions. But instead there is a lack of joined-up thinking."
Yvonne has multiple sclerosis. In the last year she has also developed epilepsy. She shares her Staffordshire home with Peter, her partner and full-time carer. Five mornings a week two carers attend for half an hour to help her shower.
"It takes a long time to get Yvonne ready for a trip to the nurse," says Peter. "I sent an email asking for a home visit. The reply asked me for a reason to present to the service managers.
"Yvonne went to hospital last autumn because of her epilepsy," he continues. "When I went in to see her I found that while she was asleep, she had been moved from a side room to the ward. Nobody told her and she cried when she woke up. I brought her home."
"A long, hard battle, like being at war," is how Lynda describes her experiences of trying to get recognition from statutory care services in north east England. "Professionals don't look at you holistically and in the hospital we are shoved to one side."
Seventeen years ago, Lynda's husband Philip had a stroke that left him totally dependent on her for all his care. Since then, he has gone into renal failure and now has regular dialysis. "That's why he keeps getting infections," she says. "He had to go into a high-dependency unit once with a temperature of 41C. The ambulance crew later told me the ward had tried to discharge him with septicaemia and [the crew] had insisted on a second opinion."
Lynda believes services lack even basic understanding of the needs of carers. "Some years back, our son was injured playing rugby. I had to stay with him in casualty. I explained to the nurse that I was a carer and asked her to help me get home as soon as I could. But she wouldn't believe me and couldn't give a damn. The hospital later said it would never happen again. I really hope it hasn't."
Laura is Ethan's mum. His rare chromosomal disorder has left him with a weak chest. He has often had to go to hospital to be resuscitated. Because of his vulnerability, he and Laura are well known at their local GP surgery in Surrey.
Laura believes she is "one of the lucky ones. I am seen straight away with Ethan. My doctors have also been good at spotting when I need help. Being recognised as a carer makes a huge difference, because you are a parent as well and it is difficult. This is your child - you want to cope."