This is in effect two uncensored pieces I’ve written about being with my mother as she passed away in hospital. The first part comes from witnessing the state of the NHS up close. The second part was hard to write, but necessary (for me) and is much more personal. Writing it has been cathartic; I’ve got a lot off my chest, not least anger. I’m hard pushed to know where the anger comes from but I do know that a lot of it is aimed at the appalling state of our National Health Service. Maybe that’s just me projecting my feelings somewhere or maybe it is because what I saw made me angry.
‘Nurses are human cogs in a machine that’s being patched up with sticky tape and good intentions…’
My mother’s funeral was held on Friday 6th July 2018, one day after the 70th anniversary of the formation of the NHS. Unless we act now it won’t be around to celebrate its centenary. Spending mum’s last days beside her in hospital really brought home to me how much we’ve let the NHS become so neglected that it is essentially running at full speed just to stand still. Years of political incompetence, under investment, deliberate sabotage and our love of low taxes have left it in an ever decreasing spiral of decline.
It won’t be long before a tiny cog in the machine breaks and brings the whole thing grinding to a halt. The corporate vultures are already circling, sharpening their smiles along with their knives as they prepare for the kill.
What we, Alison and I, witnessed wasn’t unusual by any means; in fact my mum was probably lucky compared to many. At least we could be there and the ward team weren’t unkind or without considerable skill and knowledge, but they were overworked. Nurses and all the others who make up a ward team are not angels. Angels are heavenly beings who presumably don’t require paying or proper rest breaks and one assumes are sufficient in number to ensure that they can do whatever job it is that angels do properly. Nurses are human cogs in a machine that’s being patched up with sticky tape and good intentions, forced to put up with crap conditions and harden themselves to the daily indignities that the lack of money or any credible plan of recovery forces them to accept.
In a moment of weakness I picked up a copy of the newsletter for the hospital trust responsible for the hospital my mum was in and it was full of inane corporate claptrap that said nothing of any substance. For example: ‘Strategic Ambition 7: Make the best use of our estate and infrastructure’, which rather begs the question (to a cynical old bastard like me anyway) in what sort of business would you ever consider not making the most of your estate and infrastructure? No wonder the NHS is in crisis when the managers don’t consider looking after their property as an ordinary part of their business.
Just to add insult to injury, in 2017 the hospital’s Team of the Year was – wait for it - the Car Parking Team. In a hospital of around 500 inpatient beds and goodness knows how many outpatient services, catering to a resident population of over 230,000 people and unpredictable numbers of holiday visitors, that employs over 3,000 staff in accident and emergency, critical, intensive and high dependency care, general surgery and medicine, maternity, paediatrics and neonatal services in a hyper-busy resource starved NHS, the team voted the best by ‘a record 460 nominations from both patients and staff’ were the ones responsible for ensuring that your precious Ford Escort would fit neatly between two lines on the tarmac.
‘When my Johnny was born 8 weeks prematurely and I needed 6 pints of blood and then our Derek only goes and ends up in A & E because he fell off the ladder and broke his leg I was so pleased to finally come out and find Aunt Doris could park the Skoda outside for 3 hours while we all waited for Sharon to finish her appointment at the clinic.’ said a completely fictitious person I just invented to make a point.
Still at least the team responsible for erecting the information signs didn’t win. The ward my mum was on was mysteriously absent from them. Only on closer inspection, of the sort not entirely unrelated to waiting for ones wife to use the lavatory, I realised that they hadn’t been updated since 2015. And when mum’s care home telephoned the hospital they were put through to the early pregnancy ward. I wish I was joking.
Mind you we often place an unnecessary burden on the NHS ourselves. Taking a break outside the ward was illuminating and saddening in equal measure; heavily pregnant smokers wheeled out to quench their addiction, people using the A & E department to get their grazed knee treated, waddling children constantly drip fed confectionary and so on. I don’t want to blame anyone; goodness knows people have enough to deal with in life without strangers like me judging them without knowing their circumstances but if just a few of us took more responsibility for our own health there might be a few quid left over to improve healthcare and provide better staffing on the wards.
Where mum was they had a canteen for visitors and patients run along traditional lines; a choice of foods heavy on the brown end of the spectrum, relatively healthy options, variety and grumpy staff. By contrast Addenbrooke’s Hospital in Cambridge has a food court that last time I visited sported a branch of Burger King. I’m sure that selling concession space helps the hospital budget but condoning fast, greasy, fatty fried food really doesn’t send the right message. The hypocrisy in promoting public health, healthy eating and reducing weight from an office permeated with the odour of deep fried cow is astounding.
I was pleased to discover that the ward team still runs on toast though. In my days in the NHS somewhere around 11am a stack of steaming toast limp with butter would be produced and with a cursory wipe of our hands down our uniforms (hygiene taking a distant 2nd place to free food) we’d all dive in. I learnt to love toast spread with Bovril and strawberry jam. These days I substitute Marmite for Bovril, preferring yeast to the juice of a pressed cow in my diet, although I suppose yeast could pass as a primitive life form, like protozoa or Jeremy Hunt.
Oh I know Jeremy is an easy target but what galls me about him and his buddies is the stealthy way that they are dismantling the NHS while claiming to support it. Any observer, whatever their political views, will know that the NHS cannot carry on as it is. The reasons are well researched, argued and known to almost everyone so I won’t rehash them here; suffice to say living longer is costing us a lot of money. There is waste in the NHS and yes we could manage it better but ultimately it comes down to two choices:
1) Raise tax (and/or divert it from elsewhere but let’s not get side tracked by detail).
2) Dismantle it and opt for a private system along the lines of the USA.
I may subscribe to option 1, but I understand, albeit begrudgingly, that option 2 is a choice. My loathing of Jeremy Hunt and all the other baying suits on the right of the house is that they want to put mini malls and food courts into hospitals, commercialise everything possible, pull it to pieces and sell it off in bite sized, profit making chunks to the highest bidder. If only they’d have the courage to stand up and say so we’d all have an open and honest debate.
Which they won’t because it would be massively unpopular and they suspect they’d lose the argument along with their comfy seats in parliament. So instead they sing the praises of the NHS, wear shiny badges proclaiming their support and pop into the nearest private hospital to have their shame surgically removed.
So we have the shambles that heath care is becoming today. There are some fantastic services and we are indeed lucky to have it and the myriad staff who stick us back together when we break or deal with all the squishy, smelly and slimy bits that ooze out or grow without our permission inside of us. But routine care, of the non-sexy everyday kind is stretched to near breaking point and much of our beloved NHS is barely fit for purpose.
And that is what makes me angry. It’s one thing protesting about a democratically elected American president (albeit one that may not have been democratically elected and is a prize klutz), but when it comes to saving the one public service we cherish above all others, the one that unites class, race, religion, sexuality, political views and gender will we take to the streets or will we be watching TV?
‘A strange twilight existence that contained memories and stilted conversations behind plastic screens...’
I used to be afraid of death. As a child I’d have moments of inarticulate panic when I’d swear my heart had stopped, despite all of the evidence to the country.* My mother would offer me the type of comfort that she was good at, generally a variation on the theme of ‘oh for goodness sake Raymond, pull yourself together, you’re not dying…’
This didn’t prepare me for the moment 80 or so years later when I sat beside her death bed and told her that it was okay to go; after we’d told each other, possibly for the first time in our lives, that we loved each other. We weren’t close, not in the conventional sense. I suppose we did always love each other but feelings, affection and human contact like hugs and kisses just didn’t feature in our relationship. At least we had the opportunity to say it before she died. We so nearly didn’t.
Working on the Isle of Mull has its drawbacks and one of those is being over 500 miles away when you get a call to say your mother has been admitted to hospital in Norfolk and isn’t expected to last long. Aside from its remoteness another feature of Mull is its propensity for its own weather system. While most of England melted under tropical skies we had the remnants of Storm Hector to contend with, which meant winds that could pick you up like an empty crisp packet and deposit you in the next village, and then cancel the ferry over to the mainland.
After some debate and confused calls we managed to get an evening sailing and eventually pulled in to a budget hotel just outside Glasgow at around 9.30 pm. Once settled in we spoke to my children, the hospital, Alison’s parents, and my children again, and then we had a call from the doctor who’d admitted mum. He gave us grave news, honest and straight talking but compassionate; he wasn’t sure that we’d make it in time even if we left right away.
Already exhausted and emotional we had to choose whether to set off and drive through the night or get some rest. We knew the answer was rest; to go on then would be foolhardy and risk our lives, and probably those of other motorists too. But not to do so might mean missing the opportunity to say goodbye.
We compromised by setting the alarm for 3am so that we could get on the road after a rest. Alison talked to the ward staff and they promised to let mum know that we were on our way. Meanwhile for some peculiar reason I had an episode of Top Gear in my head with Jeremy Clarkson wittering on about a particular car and how he used it to drive through the night from Cornwall to Yorkshire to get to his father on his deathbed. Oh great! I had an oaf in a sports jacket making me feel guilty.
Somehow though, just as I was thinking that sleep would be impossible I woke as the alarm went off and we headed out into the strange twilight of a mid-June morning in Scotland where the sun barely has time to set.
On we drove, exchanging pleasantries, admiring the early morning sun piercing the clouds over the Pennines, stopping for coffee and constantly checking phones to make sure we weren’t missing any calls from the hospital. We made good time, even across the drudgery of Lincolnshire’s endless flat and featureless landscape, down through Kings Lynn and then with a heavy and anxious heart we were suddenly in Great Yarmouth and pulling in to the hospital. As Alison applied the handbrake I leapt up and out of the seat, afraid that if didn’t move immediately I’d never get out of the car. Fear, a companion since yesterday’s phone call surfaced along with all that my imagination could throw at me. The realisation hit me that I might be saying a final farewell to the person who, against all medical advice, brought me into the world; stubborn, single minded and frankly reckless with her own health she gave me life. Maybe she wasn’t the touchy feely type but she was responsible for my existence.
My words cannot do justice to finding that strong, independent woman laid helpless in a hospital bed; paper thin ivory skin and shallow breaths from sunken lips, a shadow of her former self surrounded by hustle and bustle, by busy people and bored patients. I held her hand, talked to her, saw her pain and felt powerless and impotent. In those minutes that became hours my mind wandered to happy Christmases, to family holidays and silly games, to the person who was always busy and who never accepted no as an answer, and then to the woman holding her young grandchildren with tender love and huge pride. Thankfully they too made it in time to see her and say goodbye, fine young men now with red tear-stained eyes.
We sat, talked, slept, talked, ate, took breaks, went for walks and talked to mum; a strange twilight existence that contained memories and stilted conversations behind plastic screens. I found I would often zone out and let the hubbub of a busy hospital wash over me. It was in these moments that I saw the reality of the horrendous mess we’ve allowed our NHS to become.
In a bay of 6 older ladies one was often crying or calling out for help, one lay with sad eyes watching us and when we took a break my mother lay dying in full sight of her. Still, on the bright side we got to hear all about Eva** in the next bed and how her son left the toilet window open when he called in to get the pressure washer from her neighbours. Her visitor had the type of voice that could etch glass and was clearly under the quaint illusion that a plastic curtain suspended 10 inches from the ceiling was soundproof.
We were also treated to the oral delights of nurses talking in loud voices to deaf old ladies about ‘cleaning you up because you need to be changed’. There was no sense of dignity, no thought for the sensibilities of those they were sharing the ward with because, well because flitting about in a rush was all that they had time to do. If we weren’t present there was no one on the ward who could spare the time to sit with a dying woman or spend a little while consoling a patient whose dignity was left at the front entrance when she was admitted.
One team who really stood out was the hospital chaplaincy who were truly amazing. They were kind and considerate, knew exactly what to say, gave comfort even to a grizzled old cynic like me, prayed with mum, offered respite and a calm space for private thought and reflection and didn’t once shy away from being honest.
The hospital chapel is shared by all faiths and is a beacon of cooperation and mutual respect. There’s no room for the luxury of theological debate when you are on the sharp end of human existence. In a building where fragile new lives struggle into the world and where loved ones exit it no one cares how many angels you can fit on the head of a pin or if you are Catholic or Protestant, Sunni or Shia. When you’re comforting a mother who has lost her daughter it doesn’t matter if you don’t eat pork, eschew all animal flesh or think that all God’s creatures are here for your tasty delight. What matters is the love, compassion and grace you show them and if that isn’t what religion is about then it means nothing.
Up and down the country volunteer chaplains, of all faiths and none (humanists usually) demonstrate exactly what is good and worthy in human beings and do so with scant recognition. No Team of the Year award for looking after your immortal soul when there are more worthy causes, like looking after your precious Audi.
The one thing the chaplains couldn’t help mum with was the physical pain, but that was when the nursing team really came into their own. What I had no concept of until then was the dilemma that her pain presented. While she was sedated on medication she was peaceful but semi-conscious at best. When the medication wore off or if she was moved by the nursing staff she became more lucid, the pain jolting her back to the here and now. How fucking awful is that choice; pain but the chance to say goodbye, a few comforting words, a prayer from the chaplain or just to reminisce … or no pain and no words of comfort or awareness of your surroundings?
Finding her in discomfort the nursing staff gently steered us towards pain relief and we willingly let them. By then mum was in a side room and fading. It was as if there was a celestial holding pattern, like planes circling an aerodrome until a slot becomes available. As she became less responsive and the inevitable end of her journey, at least down here on earth, was in sight Alison and I spent the night taking turns by her side while the other kipped on a sofa in a side room. In the morning around 10am we shared a joke, something of no consequence, and mum passed away while there was laughter in the air.
We cried, placed the wooden cross she’d been given on her chest, and sat with her. After a minute, an hour or a year, I gave her a final kiss and said goodbye.
In a world where we put money before care, political survival before compassion and cars before people death no longer holds any fear for me…but I am now terrified of dying.
For Iris Olive Rose Canham (nee Edgar) 14/08/1929 – 18/06/2018
* Like it beating so fast inside my chest in panic that it threatened to break free.
[** Not her real name.