Carers like me connect patients and doctors – so why are we so often made to feel invisible? | Emily Kenway
IThe fall of 2024 of T and I speak to a doctor A&E. We are in refresh pause during a conference on care. He tells me that he and his colleagues keep their lanes of the NHS visible when they take relatives to medical meetings. This means that doctors listen to them. It is understandable; They are peers with shared training and expertise. But it is also exasperating because I know the story of Mary and many others like that.
Mary is 58 years old and lives in Wales with her husband and their adult son. Following epilepsy in early childhood, his son has a global development delay. In practice, it means that it is not mobile, non -verbal and takes food through a stomach tube. I worked with Mary and 15 other unpaid caregivers last year, helping them keep weekly newspapers and interviewed them, which led to a research report.
Mary’s son needs medication to prevent excess drool. He cannot stop choking, so it is essential to minimize his saliva production. But in her newspaper, she explained that the drug had been changed and that the new type was less effective – he had dangerous cough attacks. Mary reported this to her medical team but, according to her words: “It was a feeling of, if he was not witness by a health professional, that did not happen.” A few weeks later, she had a meeting at home with part of her care team. “I was lucky to have played,” she told me with a tired and tired smile, by which she meant that he had a form in shape in front of the professionals. His drugs were quickly returned.
I hope that Mary’s story was unique. But this is not the case. Ada is 80 years old and also cares about her son. He is in his forties, and at autism and several other conditions. She warns health professionals for her growing panic attacks for months, but nothing had been done. In an incident, he became so panicked that he fled from his daycare and had to be located by the police. At other times, when it’s just Ada and him at home, things can become violent. However, Ada told me that her concerns had been rejected. It was not believed that, by chance, a psychiatrist was assisted by one of these panic attacks. “He said he was one of the most serious attacks he had seen.”
To be an unpaid caregiver is to be deemed not credible, according to Mary, Ada and several other caregivers in this study. Mary believes that this is particularly apparent above on the professional scale. Community staff listen to her, perhaps because they see what they do daily for her son. But consultants and doctors, she said: “I’m lucky if they look at me.” However, it was Mary who was at each medical appointment for her son during her 26 years. It is Mary who spends 15 hours at each period of 24 hours by offering her care (alongside her part -time job and paid care he receives). It is Marie who identifies the side effects, monitors the symptoms and administers drugs. It is not only a question of feeling respected; For caregivers such as Mary and Ada, being heard is a question of life, death and security. From this meeting to which her son “played”, she wrote that there had been too few chairs to welcome all the participants, so she perched on the outskirts. “The irony that there was no room for me at the table was not lost.”
Family members offer much more than practical care at home in the absence of paid workers – their unpaid work is woven in the entire health and care system and at any time. At the most basic level, they perform a high volume of administrative tasks, made more difficult by disjointed and complex systems. In fact, the caregivers of the study spent up to 220 hours over 12 weeks on this type of tasks for the people they are dealing with. The newspapers are read as broken records – an endless organization and rearrangement of meetings, prescriptions and finances, automated telephone services that lead to dead ends, digitized forms that are not adapted to a goal. “I hope that we did not move in circles,” wrote Philippa, 86, and that we care about his 60 -year -old son, after a long week trying to settle his future care.
In a distribution of medical development professionals and care, family members also act as essential living standards of the medical stories of their loved ones. Jared’s wife had an industrial accident in 2011, after which she was in a coma. Jared told me that his medical notes were about 900 pages. Health professionals rarely have, if never, the time to read all the notes. In this context, Jared becomes essential as “the only one to be able to say, well, it happened in this order”.
Beyond project management and medical history, caregivers also said allowing the professionals to call “person-centered care”, ensuring that the personality and preferences of family members are included. Lisa’s mother is 75 years old and suffers from diabetes, multiple sclerosis and cognitive decline. It is supported by a paid worker. Lisa settles in paid workers when they turn. She does so practically – showing them where things are in the house – but she also communicates “The nuances of mom … I want to get there that they will see the worst side of her, but she is not that.” She tells them about the dinners that her mother has used, her flirtatious and sparkling nature. “He is such a different person now that you want their care workers to understand who they were.”
Throughout interviews and diaries, caregivers such as Lisa explain several times how they lubricate the system, which allows it to work when the expensive beings who receive care cannot. They are the invisible but essential vital element of the health and care system: it is not them, but it does not work without them. Since I myself have been a caregiver and I later write a book on the experiences of caregivers, I have developed a keen sense for the moment when a decision maker, a politician or simply a member of the public has not understood the contribution of the caregivers. The Labor Party Manifesto last year was an example. He managed to state a plan on care while omitting caregivers, that is to say people who make the vast majority of care in the United Kingdom. Subsequent government announcements fall into the same trap, paying rapid attention to caregivers.
While we are waiting for politicians to catch up with reality, caregivers may have to hack these identity cards from the NHS. I’m not serious, of course. But I also think that Mary, Ada and all the other caregivers I have met, producing a stiff rope of the security of their loved ones on a daily basis, imbued with magnetic and practical knowledge. He shouldn’t take a piece of laminated card to them to gain legitimacy.
