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The hidden army of carers

The UK’s millions of carers have long gone unnoticed. Can pharmacy offer a solution?

They were aptly referred to as the UK's “hidden army”. Not long ago, the country’s 6.5 million carers largely did their work behind closed doors. And this work was by no means trivial: in 2011, charity Carers UK estimated it to be worth £119 billion a year to the UK economy.

The figure was no doubt a driving factor behind the NHS naming carers as a priority in its overarching strategy document – the Five Year Forward View – last October. The document seemed to finally push carers into the spotlight, with prime minister David Cameron describing carers as “quite simply the backbone to our society” the following month. 

The recognition could not have come too soon – especially considering the growing number of people looking after friends and family. Carers UK estimates that, by 2037, 9 million will be in this situation, meaning that three in five British people will be carers at some point in their lives. 

But helping this population is more difficult than it may first appear. In April this year, the government stipulated that local councils are responsible for identifying carers who are eligible for support. The only problem is that “a lot of people” don’t even realise they are carers, says Julia Ellis, development manager for primary care and outreach for Carers Trust. 

“Not only do they not realise but they don't realise that there's any help. Imagine you're looking after someone and you're busy 24/7,” she explains. “You tend not to think about yourself – so sometimes being identified is like a wake-up call.” 

Faced with this mindset, it is clear that helping carers will require a concerted effort. And with repeated access to patients over prolonged periods, pharmacists could prove a vital tool in uncovering and supporting the nation’s hidden carers.


of carers are women


of carers have experienced depression

3 in 5 

people will be carers at some point in their lives

Source: Carers UK

The pioneers

The C+D Award-winning team at Wicker Pharmacy in Sheffield can testify to the sector’s potential in this area. It took steps to support carers years before Mr Cameron brought their work to the fore by operating an out-of-hours telephone line that offers advice on issues such as missed doses or how to access test results. The pharmacy has clearly fulfilled a need – the helpline receives around 3,000 calls a year. 

So why haven’t other pharmacies done the same? For James Wood, superintendent pharmacist at Wicker Pharmacy, the answer is simple. “Other pharmacies aren't doing it of their own accord because they're not being paid to do it and there's a perception that patients can just call NHS 111,” he says. “We need to think about how something similar can be done from a national point of view, systematically for the [entire] pharmacy network.”

This is exactly what the Pharmaceutical Services Negotiating Committee (PSNC) and charity the Carers Trust attempted to do last November, when they jointly launched a pilot in England to support carers through pharmacy. Running for three months, the Carer-Friendly Pharmacy pilot aimed to identify and support unpaid carers within primary care and community settings to offer them support “before they reach crisis point”.

“Other pharmacies aren't doing it of their own accord because they're not being paid to do it and there's a perception that patients can just call NHS 111, We need to think about how something similar can be done from a national point of view, systematically for the [entire] pharmacy network.”

James Wood

Each of the 44 pharmacies that took part – spanning Devon to Humberside – received promotional material and training to help them identify people, alert them to the support available and make referrals to the local carer’s service or GP where necessary. To ensure efforts didn’t fall by the wayside, each appointed a carers champion to lead the scheme and act as a contact point.

The results look positive: 247 carers were identified by 33 pharmacies over the three-month period. But the human stories behind the figures are perhaps most telling of the pilot’s impact and the Carers Trust’s Ms Ellis reports some “really valuable interventions”. She highlights the story of a woman in Gateshead who was caring for her parents and, after having a conversation with her pharmacist, was referred to a local carer organisation. “Through a range of support that they provided she was then able to go back to teaching, which was something she thought she'd never be able to do again,” she says.

Another carer was given a personal health budget to replace her broken television. “That was the only kind of respite she had. She was amazed when she saw the van pull up outside and a brand new TV delivered into her house,” Ms Ellis reports.

The scheme also generated enthusiasm among the professionals involved, as evidenced by the University of Leeds evaluation of the pilot published in July. One of the pharmacists interviewed said it had been relatively easy to absorb the extra work into their everyday practice, and they now feel confident to “spark up the conversations”. Tellingly, a training and GP liaison officer at the Gateshead Carers Service, which was based next to five participating pharmacies, gave similarly glowing feedback. “It was a brilliant experience, which kept me enthused from the start to finish,” she said. “I can’t wait for a rollout to all pharmacies.”

“Imagine you're looking after someone and you're busy 24/7, you tend not to think about yourself – so sometimes being identified is like a wake-up call”

Julia Ellis, development manager, primary care and outreach, Carers Trust

Back-up plan

It seems like a sensible goal. The service clearly showed the difference pharmacists could make and PSNC says it has “attracted a lot of interest” from carer organisations and local authorities.

But the apparent success of the pilot won’t necessarily result in a national service. Funding is the sticking point, according to Ms Ellis, who says the service is unlikely to be commissioned on a formal basis in the near future.

It’s a frustrating situation for pharmacists who want to make a difference to the lives of carers but can’t afford to take on unpaid work. In the face of this dilemma, the Carers Trust and PSNC are trying to link their efforts to a paid-for service: flu vaccinations. According to data collected by the flu surveillance team at Public Health England, only 174,522 of England’s 5 million-plus unpaid carers received the flu vaccination from their GP last season. By ensuring these carers receive vaccinations, pharmacists can help maintain their health and the health of their dependent.

Administering the vaccine in the consultation room could also overcome the one thing missing from the Carer-Friendly Pharmacy pilot: the opportunity to communicate privately. “We found it was tricky to have conversations with carers about their role because the public setting is not necessarily conducive to what could be a long, emotional conversation,” says Ms Ellis.

She suggests that, if data on carers is recorded on PharmOutcomes, this work could eventually be used to establish a more formal role for pharmacists: “That data could pave the way for something along the lines of what we originally envisioned: a much more in-depth carer referral service.”

Until then, Nigel Hughes, public health specialist for Community Pharmacy West Yorkshire, points out that pharmacists can reach carers through other paid-for services. “A lot of carers will be on medicine themselves and probably could have a medicines use review or help in giving up smoking, for example. They're too focused on the person they're caring for to think about anything else,” he says.

Interestingly, pharmacies in Wales are taking a similar approach in their month-long campaign to help carers this month. The Here for carers campaign, launched on October 1, encourages carers to make use of available pharmacy services such as medication support and the flu jab, and also offers them a specifically tailored guide to managing medicines. Hopes for the campaign are high: Wales’s minister for health and social care Mark Drakeford says he expects the impact to “live on long after October”. 


people in the UK are carers


the value of carers to the UK economy


of unpaid carers got a flu vaccination last year

Source: Carers UK

Be aware

So while there is no remunerated pharmacy service for carers, perhaps the most important message to take away is simply being aware of their existence. Community Pharmacy West Yorkshire’s Mr Hughes says it should be easy to spot carers during the conversations pharmacists have with patients every day. Patients who frequently ask for information about medicines for someone other than themselves, for example, are obvious candidates. “It's a case of listening for markers in someone's conversation that alert you to a request for help or an offer of some support,” he says. 

It may not be an ideal solution, and a service specifically designed for carers remains the ultimate goal. But deploying these tactics could enable pharmacists to make a real difference to the carer community. As evidenced by the success of the pharmacy pilot in England, there remain many unidentified carers in need of help. By simply being aware of the issue, pharmacy can bring these hidden workers into plain sight.

Sources: 1. Carers UK; 2. Carers Week, June 2015


Brian Austen, Senior Management

I will continue to follow what practical improvements are developed for Carers in pharmacies, general practice and the NHS as a whole. I am not hopeful! There has been lots of enthusiasm, 'kind words' and evidence of short-term improvement in the past, going back as far as 2001 with studies and work carried out by the Prince's Trust. I am not convinced that there will be the necessary improvements in support of Carers that is well overdue! In theory GPs should be identifying all Carers using their services and ensuring that Carers have appropriate access to their services. My experience within primary care is that this is only truly happening in a very small proportion of GP surgeries. "247 carers were identified by 33 pharmacies over the three-month period" I don't think this is good; its absolutely awful. On average 7.48 Carers per pharmacy or one per pharmacy every 12+ days. I've always said that the FYFV is a sham; like marketing material being used to deflect solving real issues.

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