Most days follow a similar pattern for Shirley Jamieson – and it’s a busy one at that. A delivery driver at Bedminster Pharmacy in Bristol, Shirley is also a carer for her mum, who has several health issues. She drives to her mum’s house on the way to work in the morning, making sure she is comfortable and that her meals for the day are all prepared. She checks in on her mum throughout the day, often having to tackle logistics such as arranging doctors’ appointments and organising her mum’s medication.
Like a lot of carers, Shirley finds that the buck ultimately stops with her. “Things always crop up and when they do, it’s me who has to see to them,” she says. She is fortunate to have some assistance from paid carers, as well as an employer who is understanding when it comes to occasional disruptions to the working day, such as hospital appointments. Nonetheless, juggling her responsibilities is hard work, with little let up; Saturdays, rather than being a day of leisure, are given over to tasks like shopping for her mum and changing her bed. Shirley says she hasn’t had a holiday in four years.
Caring is a labour of love for Shirley. When asked if her responsibilities pose any challenges, she says simply, “she’s your mother, you know? You do what you have to do”. But is there more that can be done to reach out to people like Shirley who find themselves caring for a loved one in circumstances that can be challenging?
We think we have a good understanding of how the health and care workforce is made up. Doctors, nurses and pharmacy teams loom large in the picture for many of us, along with social workers and mental health professionals. But there are millions of others providing care that is vitally important – and too often goes unsung. For all that it is unpaid, carers’ work is crucial in helping their loved ones live with health conditions that are sometimes debilitating.
UK charity The Carers Trust estimates that there are seven million carers in the UK – equivalent to one in 10 people performing duties with an estimated economic value of £132 billion a year. According to the 2011 census, three million combine caring activities with paid work. ‘Carer’ is a broad term, applying to many people carrying out a variety of roles.
Carers often assist their loved ones with daily activities such as bathing and see to it that medicines are taken as prescribed. Equally, many carers provide emotional support, such as helping someone who is going through a mental illness. Perhaps not realising that the term is so inclusive, many don’t self-identify as carers, and may underestimate the importance of their role. According to the NHS, it takes the average carer two years before they acknowledge themselves as such.
The responsibilities of being a carer can take an emotional toll. In a recent survey of UK carers carried out by online wellness platform WeMa Life, 53 per cent said their duties had had a “significant impact on their emotional state”; 30 per cent said that the stresses of caring had caused issues in their relationships with families and friends.
Rohit Patni, CEO and co-founder of WeMa Life, commented that carers “are clearly putting a massive financial and emotional strain on their day-to-day lives”. These are issues that The Carers Trust encounters every day, says acting head of policy Laura Bennett. Laura says: “Lots of carers tell us that their caring role can leave them feeling worried or stressed, and sometimes that can lead to more diagnosable mental health issues like anxiety or depression.” Caring duties can lead to some physical health issues as well, Laura says, “either because carers perhaps haven’t managed to look after themselves as well as they might because of the demands of their caring role, or because of the link between how our minds and bodies work”.
Like Shirley in Bedminster, many carers find themselves performing a careful balancing act. Laura comments: “I think a lot of the issues that carers face are just having to think about things a lot of the time, like having to check is that the right medicine, remembering what the doctor said, or knowing what to do if the pharmacist says a certain medicine can’t be taken with another.” All this can be especially hard on the UK’s 700,000 carers who are under 18.
Data from The Carers Trust reveals that 68 per cent of young carers are bullied in school, and that the average young carer misses 48 days of school a year. Laura says there is “data to show that being a young carer is a risk factor for children and young people’s mental health,” which is why it is “really important that young carers are identified and supported earlier”.
There are 788,000 unpaid carers in Scotland, including 44,000 who are under 18. Under the Carers (Scotland) Act 2016, which was enacted in April, this care workforce has new rights meaning carers are entitled to greater support from their local community services. The Act entitles anyone providing unpaid care to a personalised plan aimed at identifying and addressing their needs. It is hoped that the move will help carers in Scotland access information, advice and support to help them cope as and when it is needed, to avoid crises down the road.
The Act sees changes being made at the community level, with local authorities and health boards working together to identify and support carers, and at the individual level, with carers being more involved in deciding how they are supported. The Act also sees the definition of ‘carer’ revised and expanded to include more people; it is no longer stipulated that they provide “substantial caring on a regular basis”.
Scottish health ministers say this means more people will be able to access support. Public health minister Aileen Campbell said: “Carers play a vital role in Scottish society, providing millions of hours of unpaid care a week for friends, family and neighbours. We owe them an enormous debt of gratitude. “It is vital that all carers receive the support they need to look after their own health and wellbeing, and have a life alongside caring.
That is what the Carers Act will deliver. “Our reforms will significantly boost the rights of carers and ensure that health boards, local authorities and others are doing all they can to identify and support the carers in their area. “Crucially, that means having their own needs identifi ed and addressed, and being involved in decisions about their own support as well as the needs of the person they care for.”
Pharmacy teams are “really well placed” to support carers, says Laura, as pharmacies are “a community location where people could be coming back to time and again”. For example, she says, if someone picks up a prescription for someone else, “just having some simple understanding of things you can ask a carer would be really helpful,” such as whether someone is relying on them to understand how to take the medicine. She recommends checking The Carers Trust website to gain an understanding of some of the issues carers face, as well as finding out if the charity has a network partner in the area.
Taking the time to develop a positive relationship with carers “will help pharmacy teams understand what’s going on, but it will also mean that medication understanding and compliance are improved,” says Laura.
Interventions by the pharmacy team can also help improve carers’ physical health, she says. “For example, carers are eligible for the free flu jab and some pharmacies obviously do deliver the flu jab or can tell carers where to get one. There are other things teams can be aware of, such as how customers can access weight management services, smoking cessation, blood pressure.”
Bedminster carer Shirley says that as a customer “I would want [team members] to be friendly and welcoming, because you don’t know what that person is going through.” Shirley says that on rare occasions, carers can be “really overwrought,” and while there is no excuse for anyone being rude, she thinks that taking a step back and considering the carer’s situation can help defuse any difficult situations.
Pharmacy teams “have always provided support for carers via the wide range of services they provide,” says the Pharmaceutical Services Negotiating Committee (PSNC). “This support, such as practical assistance to order and collect prescriptions from GP practices, delivery of medicines to people’s homes and helping people to manage their medicines use, as well as signposting to support organisations.”
While many of these services are not targeted specifically at carers, PSNC says, they can have a real impact on this group. For this reason, it is “extremely important” that carers are identified and kept in the loop regarding the support available to them. PSNC has a range materials aimed at helping pharmacy teams support carers, including template leaflets alerting carers to vital services such as repeat prescription collection and flu vaccinations.
Laura says that for some carers, “there may not be another place in the community to support carers but the pharmacy is there”. “Keeping carers connected with their own health and with the community, and aware of the support and information that’s out there, is so important. I think pharmacy is such a vital part of that picture for carers. It may not be the only support that carers need but it’s a really big thing,” she says.
The Carers Trust estimates that there are seven million carers in the UK