In this harrowing and very personal account, David Howell tells of his own recent experiences with the NHS – and how it seems to have lost sight of the importance of care in its constitution.
Imagine you’ve led a dignified life, a long and dignified life, in which you’ve been a really valued member of society, and a cherished and appreciated member of your family. You’ve paid every penny of tax you’ve ever owed, without complaint, and you’ve supported others not as fortunate as you, by donating to charitable causes. Wouldn’t you then deserve – and be entitled to – the best possible care in your latter years? You certainly wouldn’t expect to be treated as if you’re a burden or an irritant. You would assume a civilised society wouldn’t allow such a thing to occur. Sadly, in the UK, in 2021, this is happening on a daily basis. People are being failed by the very institution that was built to protect them, and that they have paid for all their lives. I had heard the stories, and then I saw it happen before my very eyes. And I was appalled.
At the beginning of June 2021, around 14 months since the country, en masse, started to sacrifice their civil liberties in order to “help” the NHS cope with Covid cases, both of my wife’s parents were taken into hospital with serious life-threatening conditions. I had watched them slowly deteriorate for months. Their once active lifestyle had all but disappeared. They used to take regular trips out to the local weekly scrabble club and other social gatherings, and visits from their family gave them that essential lifeblood of human connection. Those experiences, of connecting with people, gave them their essential reason to exist, even as they grow older. In retirement they continued to live with some degree of meaning and purpose, still serving society and adding to the rich tapestry of life. They provided real guidance and wisdom to the younger generations in their family, and liked nothing better than to share a meal with family and friends whilst reminiscing about times gone by or discussing the local football team’s form, and their recruitment of new and upcoming players.
The Covid-19 lockdown, imposed by the government in March 2020, virtually halted the lives that these two people enjoyed. Every aspect of their lives was affected. They were cut off from friends and family; they lost their ability to connect, physically, with others. Some of their most basic human needs were cruelly curtailed and instead they started a sentence of solitude, being told to stay confined like criminals in their own home, being made to feel fearful of venturing out; fearing human interaction itself, something that they had so enjoyed. Their greatest joy turned into their greatest fear in an instant. It is now starkly evident to me that their experience over the past 15 months has aged them dramatically. They have descended into poor health and both display signs of the early onset of dementia. They have been tormented. Robbed of their daily outings, they have been stuck inside with the TV on. Thus they have been bombarded by the constant news of Covid-19 deaths and infections, and the repeated chilling adverts showing the nightmare of Covid sufferers. They were subjected to a relentless stream of messages warning that anyone might infect them, that the disease could be lurking around any corner ready to kill them. So they didn’t go out.
We now know that the fear-mongering messages were designed specifically to frighten people and stop them from leaving their homes. The government’s “Behavioural Insights Team” or “nudge unit” was charged with “controlling” people’s behaviour. Perhaps, pre-pandemic, they were a benign team, delivering positive messaging to help improve people’s health. Perhaps they were behind the campaigns to help people to remember to eat “five a day” and “30 x 3” (thirty minutes of exercise 3 times a week). To “nudge” people’s behaviour with pictures of vegetables and yoga classes, to keep them healthy, seems like a fairly positive thing to do. To nudge people’s behaviour, using fear messaging, to prevent them from doing the very things that could keep them well during the outbreak of a respiratory disease – things like getting sunshine, fresh air, and stimulating their immune system with physical contact, is abusive. Terrorising them in their own homes, increasing their stress and anxiety to toxic levels, is surely nothing short of criminal. What was done to people now looks like a macabre social experiment in which they were unwitting, innocent guinea pigs. My wife’s parents, like so many people, dutifully followed the crowd, obeying all the rules, trusting that their government would only ever tell them to do the right thing for themselves and society as a whole. At the very least, we assumed that our sacrifices would mean that the hospitals would be able to cope admirably and compassionately with anyone who needed healthcare. Nothing could be further from what I have experienced.
On the day my father-in-law was admitted, we received a phone call at 10.45 pm telling us to go to the hospital immediately as his condition was critical. A male physician asked us, over the phone, whether my wife was willing to agree to have a “DNR order” put on her father. This order basically means, “do not attempt to resuscitate” if the patient goes into cardiac arrest. The physician explained that, “jumping up and down on an elderly man’s chest is harmful and unethical” and this was the reason my wife should agree to the DNR. I am still struggling to get my head around that logic. To try to save a man’s life by doing something that could kill him is wrong? How? Reluctantly, my wife agreed to the DNR.
When we got to the hospital, which is about 30 miles from our house, only my wife was allowed to go into the ward. I had to wait outside and sleep overnight in the car. We were told that “Covid restrictions” were still in place and most patients were not allowed visitors at all, but my wife’s father’s condition made him a special case. Despite having been warned, on the phone, that she’d have to take a “Covid test”, once we got to the hospital, this was never mentioned again. She spent the night at her father’s bedside. The drugs he’d been given to regulate his heart had put him into what can only be described as a state of psychosis. He was hallucinating, he was agitated, he was confused, and he was extremely hyperactive all night. My wife had an extremely stressful time sitting with him through the night, often having to prevent him, physically, from getting out of bed, and restraining him on numerous occasions when he attempted to remove wires and tubes from his body. Thankfully, he made it through the night, but he had developed urinary problems and had to be transferred to another hospital to have those treated before he could have the surgery that had been offered to him, to fit a pacemaker. This hospital was a further 10 miles away. Fortunately, my wife was still able to accompany him, providing him with comfort and reassurance at a very distressing time.
Once my father-in-law had been transferred to the original hospital and his pacemaker had been fitted, my wife was abruptly told that no further visits would be permitted. Why was that? Her father still needed her, nothing had changed, but she was denied access. In the first two days, she had effectively acted as a support staff member for the NHS. She had been their “eyes and ears” while her father suffered the effects of the administered drugs. She freed up the hospital staff to carry on with their duties instead of having to sit with a distressed man. Once my wife’s services were not needed, she was frozen out. Suddenly she was treated like a hindrance, or an annoyance. And not being there severed her communication. Having seen his reaction to the first drugs he was given, she desperately wanted to keep tabs on what treatment her father was receiving, and to check on whether he was getting enough physiotherapy, and whether he was being mentally stimulated and well fed. She had been taking care of him on behalf of the NHS; she wanted to continue. However, every time she tried to phone to get information she was “fobbed off”. She was told to call back later (that is, if she could even get the phone call answered, most of the time it rang out), or that they would phone (they never did). She was told that there was a shift change, or that the nurses were doing the drugs rounds. She was told they were busy and that the person looking after her father was engaged with looking after someone else. She was tortured by being unable to ascertain whether her father was receiving good treatment. She had no reason to believe he was, and every reason (since she had been doing most of his bedside care herself to this point) to believe that he wasn’t. At every turn, she was made to feel that she was not entitled to any information; that she was a nuisance. This is a terrible thing to put onto someone’s concerned next of kin. And it was counterproductive. Had she been allowed to stay and look after her father, she would not have been calling and bothering them. A lack of information triggers suspicion and anxiety; and eventually leads to conflict. This has been going on for five weeks at time of writing. He is currently still in hospital having now developed a urinary tract infection.
Throughout this ordeal, my wife has never been without the additional stress and worry over her mother’s condition. My mother-in-law was admitted to hospital a few days after her husband. She has not been 100% since having a triple bypass operation, and is only semi mobile as she has severe back problems. However, the fear and anxiety of being unable to get a face-to-face appointment with her GP for over a year did far more damage to her health than anything else. After her husband – her designated carer – was taken into hospital, her condition got worse.
For several weeks, two people, who have been married for over 40 years, lay in the same hospital, forbidden to see each other. I just weep when I think of their emotional pain. And they were not allowed visits from the closest family members. I will never come to terms with the cruelty of this.
My mother-in-law was eventually discharged a week ago. She was offered a “care package” that guaranteed she would be visited four times a day. When her son, my brother-in-law, saw her, the first time any family member had seen her for nearly a month, he was horrified at her condition. He said she was in a terrible state; she looked as though she had “aged 10 years” and he wondered how on earth she had fitted the criteria for discharge. She had lost weight and was no longer independently mobile. Unable to get up her stairs, a commode was put in her lounge for her to use. When he voiced his concern to the care worker who arrived that evening, he was told, “I’ve seen a lot worse.” We all immediately agreed that, if people were getting discharged from hospital in a state a lot worse than that, there was something seriously wrong in the “health service”.
During her first night at home, my mother-in-law developed chest pains and phoned for an ambulance. But when it arrived, the paramedics who examined her declared that she was not “bad enough” to be admitted to hospital but that someone should remain with her. Which, again, seemed to put a lot of responsibility on a family member – in this case, to be my wife’s brother. She got through the night and the next day, but the following night had a fall. The carer found her on the floor in the morning and an ambulance was called again. This time she was admitted to hospital to examine whether she had hurt anything during the fall.
Why hadn’t the original ambulance call out resulted in her being readmitted? Well, we later found out that ambulance staff are encouraged not to take recently discharged patients to hospital because it would be registered as a “failed discharge” and be a black mark on the hospital’s records.
Our relief that she was back in hospital being cared for was soon shattered. Just over 24 hours later, my brother-in-law, after a terrible ordeal trying to get information about what ward his mother had been admitted to, discovered that she had spent her first day back in hospital lying on a trolley in a hospital corridor with no food, no water, and no company. Before he received this devastating information, he’d been given the usual run around on the phone, unable to speak to anyone for hours. At one point he was told his mother was okay and then the person on the phone admitted that she hadn’t actually seen his mother, she just “knew” she was okay! When he finally got through to someone in charge, and voiced his concerns that his mother had been mistreated, he was told, “We’re not a care home.” Clearly the hospital felt that only “care homes” need provide care; hospitals are not required to provide care… or food… or water.
Where, as a society, have we gone wrong, when a man can complain that his elderly mother has been abused – denied comfort, food and water from an institution she had invested her hard earned money into all her life – only to be told, “We’re not a care home.” Have we totally dehumanised the NHS? Is this what everyone was coerced into clapping for? Perhaps, when a society deems it acceptable for a 100-year-old man to “raise money” for an institution that we have all paid for, the perception will be that anyone receiving any treatment from it should count themselves extremely lucky and not expect luxury extras like care, food and water! What next? Should we clap for the Bank of England as they raise our interest rates? Cheer for HMRC as they chase near-bankrupt businesses for tax payments? Draw rainbows for the Home Office as they introduce legislation that will all but ban our right to protest?
My in-laws are both still in hospital. My father-in-law is now battling with a new urinary tract infection in hospital. He’d been there for four weeks when we discovered, to our horror, that he still had a DNR order “on him”. By this time he was certainly out of danger, but if something had happened to him, the hospital would have had no legal duty to try and resuscitate him! It happened to be a Sunday afternoon when we suddenly thought to check that the DNR order had been lifted. When we got through to the ward sister, we were told that we’d been very inconsiderate for calling on a Sunday and that the DNR could only be overturned by a doctor, and that could only be done the following day. She treated us as if we were asking for a very inconvenient favour! To add insult to injury, one of the nurses went and discussed this matter directly with my father-in-law. He obviously had no idea he’d been placed under a DNR on the night he’d been admitted to hospital, because he’d been so unwell. He became extremely distressed and when my wife spoke to him, later that day, he was very confused and upset. Can you imagine discovering the existence of a legal document declaring that, if you went into cardiac arrest during a stay in hospital, they were not required to try and save your life?
During the discussion with the ward sister, it became apparent that she blamed us for not “remembering to cancel the DNR”. It wasn’t a wine club subscription! Surely a medical professional caring for my father-in-law should have taken responsibility for questioning the DNR. Or perhaps they just didn’t notice it themselves. Perhaps it was just too much hassle to raise the issue. Again, what kind of society allows this from medical professionals?
Conway’s Law, commonly known as the “mirroring hypothesis” is based on the work of Melvin Conway, an American computer scientist and programmer who came to prominence in the 1960s. He stated that, “Organisations which design systems are constrained to produce designs which are copies of the communication structures of these organisations.” In other words, organisations tend to create systems that mirror their own communication structures. So we can assume that the behaviour of the staff in the NHS is a reflection of whatever has been communicated by the administration and leadership. For example, if they have been told they will only be judged on how many “failed discharges” are recorded and not on the number of complaints made by relatives of patients, then we know where they will put their efforts. How can we square this up with the Hippocratic oath, “First do no harm?” I’m sure it does not mean, “First do no harm to your KPI targets.”
The NHS is not a business. The NHS is a service that most people in the UK spend all their lives paying into on the understanding that they will receive the best care in their twilight years. If the NHS can no longer provide that, or no longer wants to provide that, then it has failed us. Give us our money back and let us build our own health service based on the principles of “people first”; that is the very least our elderly and infirm deserve. As Gandhi is reported to have said, “The true measure of any society can be found in how it treats its most vulnerable members.”
David is a retired UK Police Sergeant. He worked in police aviation for many years, specialising in training and crew resource management. He is now a training consultant, with his own business, and is an advisory board member of Conduct Change.