I didn’t think that my experience of NHS privatisation could get any worse than last year when my father was dying, slowly and painfully from leukemia. He was sent home to die but he didn’t get home for ten hours because someone had forgotten to order his medicines. Then the specialist bed didn’t arrive for him to die in and the oxygen didn’t turn up to help him breathe. Finally someone ordered an ambulance from Newcastle (only 60 miles away) and the bed and oxygen arrived. The night he died, the emergency nurses were an hour’s call away, since they cover the whole of North Yorkshire.
He died in intense pain with absolutely no dignity, which was horrific for a man who had devoted his life to protecting the dignity of others. And even more horrific for my poor mother, his partner for 65 years, at his side. Nothing can be worse than that I thought. I am still haunted by the screams of pain from a man who was stoically silent. He helped me move house, carrying boxes without complaint and without admitting he had bone cancer (his second cancer).
Since then NHS destruction has now taken an even worse turn, there are just not enough beds (2.8 beds per 1,000, an average of one per 360 patients, half the bed provision of France and Germany) and care has simultaneously been destroyed by government cuts, with an estimated £2.6b funding gap. Trying to negotiate between the two forms of institutional collapse is what everyone is likely to face, as I did.
My dad had been my mum’s 24/7 carer. For several months since my dad died, I’ve desperately tried to get carers to help me look after her. She’s 91 blind, has trouble walking (osteo-arthritis), is deaf and struggles to dress and feed herself. Just finding, securing and retaining carers is a full-time job and another story. I feel as if I’ve been transported back to and need to update my research in Formations of Class and Gender where caring was a form of class war ,“Oh no, I’d never abandon my mother/child for work” was the major critique of those who stood on the moral high ground of full-time care as their only means for attaining value. I’m now characterized as the uncaring middle-class person and I recognize and understand those glances of derision as I try to do a skype work call whilst they wipe my mum’s bottom.
Now she is “bed-blocking” and I’m desperately trying to find her somewhere nice to spend her last days with dignity.
Yet it’s also hard to experience first-hand the levels of exploitation of the carers. Even though I was paying £17.90 per hour, they receive less than £10, and the sheer resentment towards their agency as a result of their working conditions: zero hours, minimal training, no time to travel, monitoring, dodgy tax scheme, and being treated without respect, is affectively contagious. The difference between the carers in the 80s/90s of Formations and now is alienation. Such are the negative conditions of caring labour that it can no longer be converted into a source of positive value, although condemnation of the uncaring continues.
But that is the daytime struggle. I have no choice but to look after my mum at night as there is no overnight caring provision available in the area. My mum, like most elderly women, needs to pee a lot during the night and needs lifting onto a commode. I’m remarkably privileged to be flexible enough, on a research fellowship, to be there. But I was a minute late in getting to her when she shouted and she fell off the edge of the bed and ended up back in hospital. Now she is “bed-blocking” and I’m desperately trying to find her somewhere nice to spend her last days, with dignity. Impossible. Nobody wants her. She needs too much care. I find many nursing homes have converted into non-nursing caring homes as it’s harder to make profit from nursing (more regulations, nurses are more expensive than carers, alongside cuts in local government funding).
More than 100 care home businesses have collapsed and 380 declared insolvent since 2010. There is availability in the homes that the hospital nurses describe as places where you “wouldn’t put your dog”, or “your worst enemy”. These must be the 1,850 identified by the Care Quality Commission as needing improvement, or the 153 rated as inadequate. My mum isn’t a dog or my enemy. And anyway I like dogs.
Only the regional BUPA homes have availability. Not surprisingly. They look nice and offer nursing care, but cost significantly more than sending a child to Eton.
I am surprised when these comments are repeated by the team responsible for ejecting the “bedblockers”, who I am sure are on performance pay. Once my mum was sent home from the hospital in the dark and left by herself. They didn’t let me know that they were sending her home (I was in London 250 miles away). She had to sit up all night in her clothes, freezing, stuck where she’d been put as she couldn’t get to her walking frame. They hadn’t put her emergency call wristband back on (removed whilst in hospital) so if she’d fallen over she’d be there until somebody found her. Which could have been the time it would have taken me to find out where she was and get back up north, easily time to freeze to death if you weigh under 6 stone.
In order to discharge her the hospital says she requires no nursing. The care homes who come in to assess her reject her because they say she has too many nursing needs. I’m stuck. Who defines “nursing”? After the fifth rejection the discharge team coach me into how to “tell” my mum’s needs to prospective care homes: they’re “social” needs not nursing ones, they insist.
But care home managers are not stupid and they don’t want the extra work. She’s on three waiting lists, but hasn’t had the assessment and they may reject her too. One care home has a four-year waiting list! My mum is 91. So I’ve had to search further and further away from where she and her friends live. It’s taken a huge amount of my time. If I don’t find somewhere soon the hospital threatens to “place her” wherever they can find availability, invariably with dogs and enemies.
My mum hasn’t been fed. They just leave her food in front of her and then take it away if she doesn’t eat it. But I had already told them she couldn’t eat without help. She’s too upset to care.
Only the regional BUPA homes have availability. Not surprisingly. They look nice and offer nursing care, at £950 per week they should. That is £49,400 per year (Eton is just under £34,000 annually, but it gives a future). My parents have savings from a life of stale food and no holidays and I can remortgage if necessary, using my access to debt to fund her care. My local London care home is £1,500 per week. Yes per week, that’s £78,000 per year, more than double the cost of Eton. But it’s full and my mum doesn’t want to move to London as she thinks everyone will speak cockney and she won’t understand.
Finally, a regional BUPA home review and accept her. My mum is still mentally sharp “you’re abandoning me for your work” she charges. She’s never understood what I do and for her me going to university was the worst thing that ever happened. Just like the women working in care in my research, putting work before family is a cardinal sin.
Driving her there is horrific. She sobs all the way. I tell her it’ll be like a 5* hotel then realise that she has no idea what that means as she’s never stayed in a hotel. The staff give us a lovely warm welcome and then we walk into the main lounge and every person but one cannot speak. They are mainly stroke patients. Thank goodness my mum can’t see. It feels like entering a horror film. She doesn’t understand why they aren’t talking.
The staff are really busy with intensive nursing. But she’s given a cup of tea and they make a list of what she likes to eat (bacon sandwiches, chips and corned beef). I stress that she needs help to eat and write in it big capital letters on her food list. She has a lovely room but it’s freezing. I finally abandon her and break my heart driving back to her home. I’ve already broken hers. I decide I can’t do this to her and I’m going to give up work and look after her. I’ve no idea how but I’ll manage. I go back to London to try to sort things out. Her friend visits her in the care home and rings me, worried. My mum hasn’t been fed. They just leave her food (the food that she likes) in front of her and then take it away if she doesn’t eat it. But she can’t eat without help. She’s too upset to care.
Then they forget one night to give her the button to press for help to the commode. That really upsets her. Just as my dad was totally invested in dignity, my mum’s source of value is respectability. Her friend rings again “you have to rescue her, she’s starving and going downhill rapidly”. I do. It’s been four days, she hasn’t eaten, now she can barely speak or walk. I get her home, feed her and tell her I’ll look after her. She smiles. She’s put into palliative care the next day and dies a week later.
In this destroyed system with so little humanity, only profit, where those who want to care are so dispirited and exhausted, I was privileged, I could afford to pay for care. My mum wasn’t allocated to the space only fit for dogs and enemies. But ultimately, and this is what the privileged politicians need to realise: even though I was paying more than I would for Eton, there is not time to care, anywhere. Neglect by design is the name of the game. This is an institutional condition that even the middle class cannot defend against or ameliorate with money.
Bev Skeggs is Editor At Large of The Sociological Review. She tweets at @BevSkeggs.