This week is Carers Week 2020. When people think of care, they tend to think of the struggling, exceptional nursing home staff, tending the elderly residents, without adequate PPE, providing tea and bed changes, earning a mediocre crust while doing their utmost to comfort a life ravaged by COVID-19. The reality is that across the country another story of care takes place behind closed doors, of low paid, unpaid care, all ages, all colours, and all these selfless people on the cusp of physical, financial, and mental oblivion.
My daughter is disabled and requires full-time care. My wife and I used to share the duties between us, however, a slipped disc has seen her out of action and also under my care routine since October 2019. This means my care has been amplified. My beautiful daughter requires physical and mental care every hour of the day and night, and with that my wife is in constant pain, needing support and frustrated with her situation. I feel I am hanging on in a hurricane. My Bipolar manifests itself in the only quiet few minutes I get, and with no end to lockdown in sight, 10 weeks behind an unopened door, I have to hold back the straining lead of the black dog and carry on.
A lack of support
I spent last night awake, constantly checking my child’s oxygen levels as the Bipab alarm was sounding every few minutes, indicating a fault. It was then, at 4.15am, eyes like black holes in the sky, that I thought that I am not alone. As a campaigner and columnist, I am regularly besieged by messages from fellow carers, carers on their last legs, about to break, crying out to a Government with its financial hands held over its unsympathetic ears. There are stories from people who tell me that local, cash-strapped councils are resorting to bully tactics should a parent dare ask for respite. The solution from some? We will take your child into care. Other stories are equally shocking, one parent told me she looks after two beautiful boys with life-limiting conditions and is only allowed one carer benefit for both her children, heartwarming stuff from the emotionless DWP in COVID-19 UK.
For those unaware, carers allowance is the “generous” £67 a week benefit from The Department for Work and Pensions, that is supposed to see the person nominated as the main carer, and the recipient of care, through to the next payday. The common belief from the DWP is that care is a simple task, low skilled, when in fact that assumption is offensive and misguided. Carers are self-trained in everything from physio to counselling, to nursing, to law, and more. An insight into our brilliant abilities to multitask would shatter a few glass ceilings in Westminster. When COVID blew through the land, the DWP added a meagre pound a week to the total. This stunningly ridiculous amount of money (lower than the minimum wage) works out to £0.36 per hour. Why? Because another factor they are ignorant of is that caring is a 24-hour, 7 day, 52 weeks of the year job. In the majority of households, the patient does not adhere to an eight-hour shift of sickness, they tend not to restrain their needs to suit a supposed working day.
Ask any parent or carer who is entitled to this benefit and they will tell you it stretches as far as a wooden elastic band. The other irony of carers allowance is the fact you may not even be eligible for it in the first place – certain criteria must be met and the individual you care for must be eligible for other benefits. A decent allowance would give us a chance to cease buying from the food bank, possibly get the wheelchair fixed and blow the candles out when and if all this blows over.
The sudden charge of COVID and its impact on carers should be have been obvious to our administration. The reality was it was not. Carers have died and the system seems confused and cold to the situations of families all over the country. The best they can seem to manage is to enable us to purchase a “care” badge or enjoy a soulless soundbite from androids like Helen Whatley or Matt Hancock. This slow-willed response has been offensive and shows the inability of bland politicians to act and be knowledgeable about the incredible human beings under their watch. Sadly, it seems the lives of children like mine are a low priority for the Government, even in coronavirus ravaged England. In our house, in millions of houses, we are already buckling under the ignorant and stubborn misguided austerity of the regime, the systematic destruction of the social care system, and now a Government woefully without empathy and preparation to deal with this pandemic. It seems if the system doesn’t acknowledge us, there is no problem to solve. An unethical QED.
Ministers are supposed to be representative of the people. If this was really the case, then wheeled out alongside Hancock and Whatley should have been the minister for disabled persons. As many of us care specifically for a disabled child or adult, reassurance and information from our supposed representative seems not only obvious but mandatory. So far Justin Tomlinson has been missing; his absence speaks volumes to the care nation. It really does seem tragic that we are represented by people not fit for purpose, ministers who are missing when they are needed to be seen, heard and rightfully criticised. MPs who have no real solutions to real problems as they have no real experience, that in itself is absurd and obviously problematic.
I am not politician-bashing for the sake of it, I am not saying there is a magic wand to our current COVID led lives. We are isolating to keep our families safe, however, the duplicity of language and action from Westminster is enraging and frustrating us. This Carers Week there will be no sudden announcement of mass support for us, there will be no obvious increase to our carers allowance, one that would be humane and at least on par with the minimum wage. There will most certainly be no apologies for letting the social care system stay decimated. This will be a week of diversion tactics from Downing Street…again.
A Carers Week plea
There are around 6.5 million carers in the UK and that means an awful lot of families being kept from sinking a corona-filled but incredible NHS. We simply want better help, better financial support, and apologies for successive missed opportunities to say; “We appreciate you so let’s better equip you.” That’s all. It’s quite sympathetically simple and easily accomplished. We are not after the moon on a stick, just a future.
If we are left to run on empty, however, what does the future hold? For me I cannot think long-term about money and the lack of support. It absolutely terrifies me and fans the flames of my deepening mental health. Care homes have seen deaths behind closed doors, I am loathe to think that our situations in the long term will be sadly any different if change is not coming. Only yesterday there was disturbing news that people have been found dead in isolation because of COVID, how many were hanging on, like me, in silence?
Care for the carers – it’s humane, it’s right, it’s responsible, it’s not too late.