Carers like me connect patients and doctors – so why are we so often made to feel invisible?

The Guardian

2 days ago

It's autumn 2024 and I'm talking to an A&E doctor. We're on the refreshment break at a conference about care. He tells me that he and his colleagues keep their NHS lanyards visible when they take loved ones to medical appointments. It means the doctors listen to them. It's understandable; they're peers with shared training and expertise. But it's also infuriating because I know Mary's story and many more like it.
Mary is 58, and lives in Wales with her husband and their adult son. As a result of epilepsy in infancy, her son has global developmental delay. Practically, this means that he is non-mobile, non-verbal and takes food through a tube to his stomach. I worked with Mary and 15 other unpaid carers last year, supporting them to keep weekly diaries and interviewing them, resulting in a research report.
Mary's son requires medication to prevent excess drooling. He can't stop himself choking, so it's essential to minimise his saliva production. But in her diary, she explained that the medication was changed and the new type was less effective – he was having dangerous coughing fits. Mary reported this to his medical team but, in her words: 'It was a feeling of, if it wasn't witnessed by a health professional it didn't happen.' A few weeks later, she had a meeting in her home with some of his care team. 'I was just lucky that he performed,' she told me with a wry, tired smile, by which she meant he had a coughing fit in front of the professionals. His medication was swiftly reverted.
I wish Mary's story was unique. But it's not. Ada is 80 and also cares for her son. He's in his 40s, and has autism and several other conditions. She had been warning medical professionals about his escalating panic attacks for months, but nothing had been done. In one incident, he became so panicked that he ran away from his daycare centre and had to be located by police. At other times, when it's just Ada and him at home, things can turn violent. Still, Ada told me that her concerns were dismissed. She was only believed when, by chance, a psychiatrist happened to witness one of these panic attacks. 'He said it was one of the gravest attacks he had seen.'
To be an unpaid carer is to be deemed not credible, according to Mary, Ada and several other carers in this study. Mary feels this is especially apparent higher up the professional ladder. The community-based staff listen to her, perhaps because they see what she does for her son on a daily basis. But of consultants and doctors, she said: 'I'm lucky if they'll even look at me.' Yet it is Mary who has been at every medical appointment for her son during his 26 years. It is Mary who spends 15 hours in every 24-hour period providing care for him (alongside her part-time job and the paid care he receives). It is Mary who spots side effects, monitors symptoms and administers medications. It's not just about feeling respected; for carers such as Mary and Ada, being heard is a matter of life, death and safety. Of that meeting at which her son 'performed', she wrote that there had been too few chairs to seat all the attenders, so she perched on the periphery. 'The irony that there was no room for me at the table was not lost.'
Family members provide far more than hands-on care at home in the absence of paid workers – their unpaid labour is woven through the entire health and care system and at all times. At the most basic level, they perform a high volume of administrative tasks, made harder by disjointed and complex systems. In fact, the carers in the study spent up to 220 hours over 12 weeks on these sorts of tasks for the people they are caring for. The diaries read like broken records – endless arranging and rearranging of appointments, prescriptions and finances, automated phone services that lead to dead ends, digitised forms that aren't fit for purpose. 'I wish that we did not move in circles,' wrote Philippa, 86, and caring for her 60-year-old son, after a long week trying to sort out his future care.
In a cast of changing medical and care professionals, family members also act as essential living repositories of their loved ones' medical histories. Jared's wife had an industrial accident in 2011, after which she was in a coma. Jared told me that her medical notes were about 900 pages long. Medical professionals have rarely, if ever, had time to read all of the notes. In this context, Jared becomes indispensable as 'the only one who can say, well, this happened in this order'.
Beyond project management and medical histories, carers also reported enabling what professionals call 'person-centred care', ensuring that the personality and preferences of their family members are understood. Lisa's mum is 75, and has diabetes, multiple sclerosis and cognitive decline. She is supported by a live-in paid worker. Lisa settles in the paid workers when they rotate. She does this practically – showing them where things are in the house – but she also communicates 'the nuances of Mum … I want to get across to them that they are going to see the worst side of her, but she's not that.' She tells them about the dinner parties her mother used to throw, her flirtatious and bubbly nature. 'She's such a different person now that you want her care workers to understand who she was.'
Throughout the interviews and diaries, carers such as Lisa explain repeatedly how they lubricate the system, enabling it to function when care-receiving loved ones cannot. They are the unseen but essential lifeblood of the health and care system: it's not about them, but it does not function without them. Since being a carer myself, and subsequently writing a book about carers' experiences, I have developed a keen sense for when a policymaker, politician or simply a member of the public has failed to understand the contribution of carers. The Labour party manifesto last year was a case in point. It managed to set out a plan on care yet omit carers, that is, the people who perform the vast majority of care in the UK. Subsequent governmental announcements fall into the same trap, paying carers cursory attention.
While we wait for politicians to catch up with reality, perhaps carers need to pirate those NHS identity cards. I'm not serious, of course. But I think, too, of Mary, Ada and all the other carers I've met, walking a tightrope of their loved ones' safety on a daily basis, steeped in loving and practical knowledge. It shouldn't take a piece of laminated card for them to win legitimacy.
Emily Kenway is a social-policy doctoral researcher at the University of Edinburgh and author of Who Cares: the Hidden Crisis of Caregiving and How We Solve It