What health support is available for carers?

Some 8.8 million people in the UK provide care for a relative or partner, and under lockdown carers have worked harder than ever - sometimes at the cost of their own health. A GP, nurse and social work expert explain how carers get help, even when services are under pressure

Community health support services across the country have been withdrawn during lockdown, and many will find themselves doing more and more for their loved ones. New research by Carers UK in April found 70% of carers are providing more care due to the coronavirus outbreak, half of which is as a result of local services cutting back or closing. On average, this extra work adds up to about 10 hours a week. A third of carers felt they were unable to look after their own health and well-being at the moment, and 38% reported problems getting medication.

Loss of support

Tahmina*, 23, has been caring for her mum, who is shielded, for five years.

"I live with Mum and since lockdown I have been her main carer," Tahmina explains. "Normally this would be split between me, my father and a paid-for carer. But my dad is still going to work, so most of the caring duties fell to me."

An external care worker used to come in the mornings on weekdays, but after the family suspended the service for two weeks to minimise the risk of COVID-19, the service was cut entirely. Visits from a specialist nurse were also switched to phone calls.

When her mum got an infection, it took several extra days to get antibiotics due to the new prescriptions process (scripts are now sent from GP to pharmacist to minimise infection risk, rather than given directly to the patient or carer). In the meantime, her mum's infection got worse and she was admitted to hospital for intravenous antibiotics.

"There was no way to have any 'me time', get a break from caring duties or wind down," she says. "It's definitely been more stressful than normal."

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GP services for carers

At the start of the pandemic, GP practices were instructed by the NHS to stop allowing patients to make appointments and come to the practice without being screened with a call from the practice. The concern was that many people traditionally frequenting GP surgeries were those most vulnerable to infection. But that doesn't mean GP practices have shut down. Instead, they have switched to doing far more consultations on the phone, via video call or through electronic messaging systems.

Dr Amir Khan is a GP in Bradford, and the author of 'The Doctor Will See You Now'. He says that the CQC now expects every practice to have a carers' register and lets staff know if their list has a lower-than-average number of carers on it. Support for carers varies from surgery to surgery but some offer double-length appointments, priority appointments, better access to phonecalls, carer support groups (when social distancing allows), health checks, and flu jab reminders.

At Dr Khan's surgery, people on the carers' register get better access to the on-call doctor, so if all the appointments have gone they can still speak to a GP. Like most surgeries, his still offers home visits.

He says he worries that not enough people are aware of the support available to them.

"We rely on people to tell us that they're carers, and they don't often do that," Dr Khan explains. "It's not necessarily a stigma. Lots of people care for people and they may think of that as their duty or what they should be doing anyway, rather than labelling themselves.

"Where I work we have a lot of South Asian people. I think they find it difficult to label themselves if they're looking after their mums or dads, which in their culture is the absolute right thing to do - it's just normal," he says.

"I run a specialist diabetes clinic in Bradford and patients often have young carers. When I ask them, 'Do you know that you're a carer? Do you know that these support services are available to you?', both them and the patient look completely baffled. But when you delve into their mental health and stress levels, it's unbelievable. It can take a lot of time and many consultations to unravel all of that with them."

Befriending

The research by Carers UK, found that carers' mental well-being was on average lower than that of people who were not carers. This was especially true for working-age carers (those aged 17-45). Compared with data from 2017-19, the research found that mental well-being had declined, in both employed and unemployed carers. Women and over-45s were most at risk. Some 55% warned that they felt just weeks away from burnout. Others reported anxiety around bringing COVID-19 into the homes of the people they cared for.

Lesley Carter is a nurse, and a clinical advisor at Age UK. She supports Dr Khan's advice for carers to identify themselves to the GP. "Carers often don't seek help because they don't actually register that they're a carer," she says. "I think that makes people much more prone to not looking after their own health."

Lesley also advises using the Age UK phone lines. Calls to the info line are up by 88% and the befriending phone lines have seen demand increase by 290%. "We've had a whole load more volunteers, and a whole load more people, and matched them. That's been really positive," she adds.

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Young carers

Young carers have been under particular strain this year. Dr Kate Blake-Holmes, an academic at UEA, interviewed young carers in lockdown to find out how they were coping when outside support was cut back.

She found that under-18s had been asked to do a lot of the work that community services could no longer safely deliver.

"One young carer had had a 'crash course' in physiotherapy," Dr Blake-Holmes recalls. "She was pleased because she could help her dad, but actually, she was anxious about it because she felt like, 'What to do if I do it wrong?'."

The young carer was also worried that showing competency put her dad's access to services at risk: "Will the physiotherapists come back? Or are they going to turn around and say, 'Oh, you've done brilliantly. You can carry on'. She's had those experiences before." Carers UK research found adult carers were also worried about loss of access to services.

Crisis plans

For young carers who have had appointments cancelled or who struggle to find time to see a GP, Dr Blake-Holmes recommends Chat Health, a free service for 11- to 19-year-olds to get confidential health advice from nurses.

Some 87% of adult carers worry about what would happen if they needed to self-isolate. Dr Blake-Holmes says young carers share the same worry.

In Norfolk, where she works, the county council are currently writing 'crisis plans' with young carers to reduce the uncertainty young carers face. "A lot of young carers didn't have a 'crisis plan'. If they get poorly, they don't know who to call or who's going to care for the person they're caring for. And if they themselves get ill, who's going to care for them?"

Carers UK estimates that only around 20% of carers have a plan. Its website offers a detailed guide on how to create a plan for emergencies, during the coronavirus pandemic and beyond.

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