When Lost Humanity Breaks Down Healthcare
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As you linger through the endless dull hours that make up most of life on a hospital ward, great significance is attached to the slightest things and also to those who are suddenly close.
Nurse P was always late with the drugs trolley, but her kindness and her fastidious approach opened up conversations during my stint in August. However, as my consciousness came back with the realisation of delays, so did my awareness that the ward was understaffed. If you are the nurse who administers drugs and there are too many patients on a particular day, then hold-ups are inevitable.
I found out Nurse P was from Nepal. This fact excited me, and was a reminder of how much the NHS has always relied on immigration to ensure its smooth running. But Nepal? Intriguing. I admit a hundred muddled cliches of Kathmandu – of beautiful people and Buddhist monks – consumed me. Nurse P was likewise genuinely fascinated when she found out I am a writer, including for Byline Times, which she looked up on her first break.
The usual experience for a disabled person in hospital is one where you grapple with the constant curse of pity. Every day: poor you, how long have you been like this? As I got better, my well-known teasing wit returned. What – sorry for me after wild times in a London punk band and writing a sex book, not to mention several fiancés and two husbands? I would counter. Sometimes this works. But after the brain bleeds, this approach often jumps to a peculiar rabbit-hole of more pity and one that feeds the tiresome ‘brave’ and ‘courageous’ disabled trope.
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Nurse P, however, was that wondrous rarity: she immediately read my column and spoke to me about it the day after, telling me she would buy my memoir First in the World Somewhere. I’m sad that the new challenges I face have crushed my energy, meaning that I’ve yet to return to the hospital and thank her with a signed copy.
Another reason the drugs trolley was often late is plainly down to the despicable, self-interested approach the Tories have to running – ruining – the NHS.
Abuse I witnessed from male nurses on night shifts is surely an echo of the culture in which they thrive. A shortage of decent staff, often poorly paid, creates a cascading effect. Older women on this ‘frailty ward’ were easy targets for a type of toxic masculinity I will always find shocking – particularly as a disabled woman – when a patient opposite me was abused. Highly vulnerable and with dementia, she was what the news likes to term a ‘bed-blocker’, and these men tormented her as a source of sickening entertainment.
I went through the night time hell in a hospital ward for just under four weeks. On those dark nights, I wrestled with thoughts of medical ghouls – Harold Shipman, Beverley Allitt and, more recently, Lucy Letby. Not forgetting the long, loathsome reign of Jimmy Savile who still at times despoils the innocent memories of my childhood.
I'm sharply aware of my own near miss now, hearing of the toxic culture of cover-up from the recent Newsnight exposure of Royal Sussex County Hospital in Brighton. That management is poor with the only concern hitting targets was one whistleblower’s take. Another report stated that “police investigations involved alleged mistakes in the treatment of more than 100 patients from 2015 and 2021, including at least 40 who died”.
Why a near miss of my own? The investigations are largely focused on Brighton’s neurology department, of which, in August, I was under its remote care. Some of my loved ones urged the ward doctors to send me for treatment at Brighton but ultimately decisions were made on brain scans and I stayed in Hastings. With hindsight, I’m very thankful.
However, a mistake was made upon my discharge. The accompanying letter stated I would hear from neurology for the follow-up and, after a three-month delay, this happened by accident when my next of kin contacted a support service which wrote to neurology on a completely different matter. I have no idea of any long-term effects of this, although, as is often the case – and it’s important to say it – my personal neurologist shows compassion and genuine interest in my recovery. He noted the error and I now have that in writing.
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Yet again, authorities are scrutinising another medical scandal. I’ve seen it all my life. But it sits alongside the compassionate salve of patience and humanity of those who’ve travelled far to work for the NHS.
As a child, I met nurses from Jamaica on the tail-end of the Windrush Generation. Young Irish women are still here and remain stalwarts for our health institution. This time there were people from South Africa, Zimbabwe and the Philippines, alongside lovely Nurse P, who had worked in the NHS for 21 years.
But I saw more of the NHS struggles by the petty failures that occurred to me after my four-week stay. No more caring staff, but fractured primary care services. It was as if the Tories had set up some vicious cost-effective ‘needs-o-meter’ where there’s a level one cannot go over. The day I left, everything began to collapse within these services that were supposedly there for my rehabilitation and recovery.
I am far from alone in this struggle and, as long as I breathe, I will fight. As despicable truths emerge from the Covid Inquiry, my resolve is never stronger. Particularly as, let us not forget, that six of every 10 Covid deaths were disabled people.
I hold Nurse P deep in my memories, to remind me of the best we have within a service that, as flawed as it is, we simply cannot lose.
Penny Pepper is an award-winning author, poet and disabled activist whose work focuses on identity, difference and what makes us human