My carer is a fabulous, warm, highly skilled woman. She supports me with the daily morning routine that most people take for granted, assisting me with personal care, including moisturising my skin, which is so fragile it bruises easily and badly, and tears into tiny extremely painful paper-like cuts, the result of one of my rare genetic conditions. I also currently have fluid on my lungs, so my breathing is already laboured, and my immune system is depressed because of my rare diseases and the treatments for them. I am therefore particularly vulnerable if I contract coronavirus – and allowing a carer who is a potential carrier into my home, runs contrary to government advice. But this is the catch-22 that the most vulnerable people are caught in right now; my carer needs to work to live, and I need her work to live, too.
As the pandemic advanced, we both agreed we needed more advice on what to do, but neither of us knew who to ask. Current advice from Public Health England (PHE) is that carers can still deliver personal care with personal protective equipment (PPE). However, this assumes carers have such equipment. Moreover, for her own peace of mind and ours, she needs to be tested.
My carer has underlying health conditions herself and naturally, she is concerned about her own well-being, but also about those she cares for. All of us are vulnerable, most are elderly, several have underlying conditions, and some are regularly hospitalised. She runs the risk of becoming a superspreader, either because she relies on public transport, or because a client or family member may already have Covid-19. The weight of responsibility for so many lives is huge but from a financial point of view, she may not have many options but to continue to work. My understanding is that the government has pledged to pay 80 per cent of her income if she has to stop working, but this will not come into effect until the end of April, and in the meantime there is a five week wait for benefits. In the absence of PPE, testing and precise advice for carers and the seriously chronically ill and disabled community, I made the decision, last week, that my carer should not continue to come to our home for the time being. I assessed that the risk to me and my family is too high.
“Just sorting myself out takes an enormous amount of energy and time; and due to my restricted mobility, I’m unable to moisturise my fragile skin”
Both my carer and I fought back our tears, as I explained that were I to contract Covid-19, at best, I would be severely ill requiring intensive care, and at worst, I wouldn’t be able to fight it. As the pandemic progresses, I would also be unlikely to pass the NHS triage test. For me, staying inside my home, isolating and shielding, even from my own family who live with me, is a matter of life and death. She completely understood and said she also felt very concerned for me. As I was unsure how I would be able to manage without a carer, I contacted the local authority direct payments team to ask if I could employ another carer. Someone I know, someone I trust, someone who does not travel by public transport and someone who would not be caring for anyone else and would therefore be less likely to be exposed, or expose me to Covid-19. They would have fewer opportunities for transmission.
The local authority are yet to respond to my enquiry. So in the meantime, I am just about managing, albeit not very well. Just sorting myself out takes an enormous amount of energy and time; and due to my restricted mobility, I’m unable to moisturise my fragile skin. Carers are already in short supply, and now the government has put through new legislation – The Coronavirus Act 2020, which was passed through both Houses without a vote – which could put me, and thousands of disabled people like me, at even greater risk. Buried in the vast Coronavirus Act – which one MP described as the size of a telephone directory – is a clause to remove local councils’ duties to provide care for disabled people, unless it is a breach of their human rights. At a time when people will be self-isolating and shielding for months on end, to protect themselves, others and the NHS, this could be potentially devastating. While unfortunately and inevitably, the Covid-19 pandemic will claim many lives, it will also shed light on systemic cracks that already existed.
As a result, I hope more people will understand how fragile our social welfare system is and will add their voices to those of seriously chronically ill, elderly and disabled people – who have been at the sharp end of decades of underfunding – so that together we can demand that NHS workers and carers, the overwhelming majority of whom are women, have better rights and pay. Covid-19 is terrifying but my carer will continue to care for as many of her clients as she can, for as long as she is able. I hope that as a country we will return the favour and begin to care better for the social and health care workers on whom so many rely. I know that carers are low paid and considered by the government as low-skilled, but my carer, and all carers, do work that not only sustains us but enriches our lives every day.