Carers like me connect patients and doctors – so why are we so often made to feel invisible? | Emily Kenway
IT’s AUTUMN 2024 and I am talking to A & E doctor. We are at a refreshment break at a conference on sponsorship. He tells me that he and his colleagues keep their NHS rope visible when they take their loved ones to medical appointments. This means that doctors listen to them. It is understandable; They are their peers with joint training and experience. But it is also disturbed because I know the story of Mary and is like her.
Mary is 58 years old, and lives in Wales with her husband and her adult son. As a result of childhood epilepsy, her son has a global development delay. Practically, this means that it is inverted, not verbal and takes food through a tube to his stomach. She worked with Mary and 15 unpaid care providers in the past year, and supported them to preserve the weekly diaries and conduct interviews with them, which led to this Research report.
Ibn Marie requires medicine to prevent excess recycling. He cannot stop suffocation, so it is necessary to reduce saliva production. But in her notes, she made it clear that the drug was changed and that the new type was less effective – he was suffering from dangerous cough attacks. Mary told this to his medical team, but as she put it: “He was a feeling, if she was not seen by a health specialist, this did not happen.” A few weeks later, she held a meeting at her home with some of his care team. She told me a tiring smile, through which she meant to have cough in front of the professionals: “I was lucky because he was doing it.” His medicine quickly returned.
I hope Mary’s story is unique. But it is not. Ada is 80 and also cares for her son. He is in his forties, has autism and several other conditions. She was warning of medical professionals of rising panic attacks for several months, but nothing was done. In one incident, he felt so panicked that he escaped from his daycare center and his location had to be determined by the police. At other times, when ADA and He are at home, things can turn violence. However, she told me that her fears had been rejected. She only believed when, by chance, a psychiatrist happened to see one of these panic attacks. “He said it was one of the most important attacks he saw.”
To be an unreliable wage career, according to Mary, Ada and many other care providers in this study. Mary feels that this is especially clear on the professional ladder. The employees of society listen to it, perhaps because they see what she does for her son on a daily basis. But from the consultants and the doctors, she said: “I am lucky if they are until they look at me.” However, it was Mary who was at every medical date for her son in 26 years. It is Mary who spends 15 hours every 24 hours of care (along with her part -time job and the paid care he receives). Mary is the one who discovers side effects, monitors symptoms and manages medications. It is not only a sense of respect; For caregivers like Mary and Ada, listening to the issue of life, death and safety. From this meeting in which her son “performed”, she wrote that there were very few chairs to prepare all those present, so she floats on the ocean. “Ironically, there was no room for me on the table that was not lost.”
Family members provide more than just practical care at home in the absence of paid workers-their unpaid work is woven through the entire health and care system and at all times. On the basic level, they perform a large volume of administrative tasks, which has become more difficult through broken and complex systems. In fact, the study sponsors spent up to 220 hours over 12 weeks on these types of tasks for the people they care about. You read diaries such as broken records – endless arrangement, rearrangement of appointments, medical recipes and financing, automatic phone services that lead to clogged ends, and digital models that are not suitable for the purpose. “I hope we are not moving in circles,” Felipa, 86, and caring for her 60 -year -old son, wrote after a long week trying to solve his future care.
In a group of changing and care medical professionals, family members also act as essential living warehouses for the history of their medical loved ones. Jarid’s wife had a industrial accident in 2011, after which she was in a coma. Jarid told me that her medical notes were about 900 pages. Medical professionals, if any, have a time to read all notes. In this context, Jared becomes indispensable as “the only person who can say, well, this happened in this arrangement.”
In addition to project management and medical history, care providers also reported the empowerment of what professionals call “Care that focuses on a person“Ensure that the personality and preferences of their family members are understood. My 75 -year -old Lisa mom has diabetes, multiple sclerosis and cognitive decline. It is supported by a paid vital worker. Lisa settles in workers paid at rotation. It is not so.” I told them about her mother’s dinner parties, her spinning and spinning nature.
During interviews and notes, care providers such as Lisa repeatedly explain how the system follows, allowing him to work when he cannot love care. They are invisible but the primary life artery for the health and care system: it does not relate to them, but it does not work without them. Since I was a career myself, and then Writing a book On the experiences of sponsorships, she has developed a great sense when a political, political, or just member of the public failed to understand the contribution of sponsorships. Labor Party statement Last year was an example of this. She managed to develop a care plan after deleting caregivers, that is, people who perform the vast majority of care in the UK. next Government ads Located in the same trap, with care of caregivers.
While we are waiting for politicians to catch up with reality, care providers may need to pirate NHS ID cards. I am not serious, of course. But I also think that Mary, Ada and all the other care providers I met, walk a rope from the safety of their loved ones on a daily basis, steeped in love and practical knowledge. It should not take a piece of the card coated for them to gain legitimacy.
