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  • Writer's pictureCrone

Road to recovery?

The first time you see someone after major surgery is always a shock. When it’s a parent, it can be hard to align the on-going vision of superior strength with the vulnerability of the hospital gown, the haggard expression and the mental confusion.

My father was preoccupied by the distended mound of belly; I was looking at the dressing that covered a 12 inch scar. He had endured a long open chest surgery to replace a valve in his heart. The NHS offers some moderately reassuring but factual information about the procedure – after acknowledging that this is major surgery and ‘isn’t suitable for everyone’. The guidance on their website reads that as an aortic valve replacement is carried out under general anaesthetic, ‘you'll be asleep during the operation and won't feel any pain while it's carried out.’ It continues,

During the procedure:

· a large cut (incision) about 25cm long is made in your chest to access your heart – although sometimes a smaller cut may be made

· your heart is stopped and a heart-lung (bypass) machine is used to take over the job of your heart during the operation

· the damaged or faulty valve is removed and replaced with the new one

· your heart is restarted and the opening in your chest is closed[1]

I had been in Paris covering the Women’s World Cup in 2019 when he went into hospital. He called me when he came round from the operation, just to say he was OK. My Stoical father. I remember being tearful, saying, ‘I love you’, feeling rocked by the reality of the thing. I hadn’t read the NHS page and didn’t fully realise the scale of the operation.

As soon as I got home, a few days later, I drove to Addenbrooke’s where he was recuperating. He was suddenly frail. The man who’d helped me move house four or five times, carrying a teak desk, boxes of books, cases of clothes; showing an engineer’s awareness for how exactly to load the van to ensure that everything fitted in. The man who made bookcases and dug gardens. Who worked 10-hour days, six days a week for much of his life. The man who, at 75, still worked full-time, as did his partner.

Kath was there to guide me through the labyrinth of the hospital to his ward. She too had the look of someone who’d survived a hurricane. As I entered the room, I was hurtled into memories of seeing my mother in hospital 24 years earlier. Fainting the first time. Seeing her dead the last time.

My father looked grey, drawn, in distress. The pain in his stomach, not his chest, was troubling him. As were the hallucinations. He was disjointed and distressed, but that core of self-reliance remained in evidence as he claimed to be ‘fine, really’.

His experience in hospital was, on the whole, the kind of thing that leaves us Brits saying, ‘We’re so lucky to have the NHS. Isn’t it wonderful. And the staff are so kind!’ Indeed, he and his partner found the surgeons and the nurses incredibly caring, compassionately reassuring and constantly patient, as well as utterly professional. They are exemplary: superbly trained while retaining the light of humane concern that led to their vocational choice.

In addition, our hospitals – though always in need of more resources and more bed spaces – are superbly equipped, cleaned and maintained. We are, without doubt, so much more fortunate than the citizens of many, if not most, nations.

Of course, nothing is perfect. The few negatives, though, that patients do inevitably experience tend to be pushed aside because we recognise, in our gratitude, that the NHS is always under pressure and underfunded.

So, when my father’s abdominal pain seemed concerning and he was told he’d have a scan, the fact that it was delayed for a day seemed a quibble. The confusion over discharge, when the drugs weren’t ready for hours after he’d been given the all-clear to go, seemed like just a slightly irritating but understandable failure of communication or organisation. My father and Kath’s confusion over that would happen next, once he got home, seemed to me to arise from the unwillingness of an older generation to ask questions and get answers.

After some weeks, he was enrolled in a follow-up programme in the community, where a group gathered to learn about maintaining heart health and the like. Sure, he couldn’t have made it to group immediately after the operation, but by the time he was on the list, he was doing his daily walks and pottering in the garden. It seemed too little, too late. Yet we were all appreciative of the programme. The feeling is that the NHS and the community health care system have patients’ interests as a priority and seek to provide what is required. While they are usually excellent in an emergency, it’s understandable that less urgent needs can be less ideally handled. Resources, as ever, are limited.

Basically, about ten weeks after surgery, my father had recovered. His recurrent complaints of abdominal pain, about which he’d talked to his GP, seemed like a digestive problem. And so, one Monday morning, he went in for a return to work assessment. Again, he mentioned the abdominal pain, but it was not unduly concerning, and he passed the physio test. His heart rate and blood pressure were fine. He’d regained some of the weight he’d lost. He was designated fit for work.

That afternoon he called me, but was distracted, saying he was now in great pain, his stomach was hurting. Not to worry – but he had to go. I thought he was anxious about returning to work. I felt a strange fondness for this sign of a novel emotional vulnerability.

At six the following morning, I was woken by a phone call. It was Kath. My father was about to go in for emergency surgery. She was controlled and reassuring, so much so that I didn’t really take on board what she said. I didn’t get in the car and rush over. I went back to sleep and called her again later.

He was still in surgery. It was a ruptured abdominal aortic aneurysm. The NHS website has little reassurance to offer on this: ‘If a large aneurysm bursts, it causes huge internal bleeding and is usually fatal.’

Kath told me that the pain was so severe that they’d called an ambulance and eventually he’d been taken to the local hospital, where the doctor gave him pain killers and some indigestion tablets. They went home again. As the night wore on, the pain intensified. Kath said, ‘Give the pills time to work.’ But, after a few hours, my father said, ‘Kath, call an ambulance. I’m dying.’

Luckily an ambulance was relatively close. Luckily the paramedics made an accurate intuitive guess – this is not a frequent condition and, frankly, they usually arrive too late. Luckily they called Addenbrooke’s who got a team ready to act at once. Luckily there were no hold-ups on the journey to the hospital. Kath followed in her car and followed the stretcher to the doors of the operating theatre. She felt that she was being given the chance to say goodbye.

He didn’t die. The NHS, our wonderful NHS, saved his life. He was one of the 25% who survive a ruptured AAA. The rapid and incredibly professional response of the paramedics and the surgical staff was critical.

More hospital visits. Jokes now about how he’s like one of those cuddly toys with a zip in which children put their pyjamas. The two scars joining below the ribs and stretching from groin to throat.

Once again, my father and Kath experienced the generous kindness and exemplary care of the nursing staff. The surgeons, with all their expertise and in-depth knowledge, were also compassionate. The physiotherapists, who helped my father get back on his feet, were wonderful, truly wonderful. And the ambulance paramedic who drove him in to Addenbrooke’s visited him, moved and humbled, saying that my father was the first person to suffer an AAA whose life he had played a part in saving, that he was so thankful to have been able to help. These people, they are special. Words, really, fail me.

So, it could seem petty, perhaps, to fret about the little niggling negatives. Again, there was the delay over the discharge and the drugs that he had to take with him, a few fraught hours waiting uncertainly to find out if his ten-day stay would be extended for another 24 hours.

Of course, he did after the wait, get home. Once more, he was facing the uphill battle to recover. Forced, again, to work up gradually to daily walks around the garden, around the block, around the town.

After six weeks or so, he got back to work, much of the time working from home, while Kath went into the office. Their life regained a kind of normality for a matter of months, until the coronavirus pandemic.

It’s a sign of my father and Kath’s self-reliance that they did their own shopping during lockdown. They couldn’t be cut off from the world entirely, they said; life wouldn’t be worth living. Both of them worked throughout, down to half-days, but they weren’t furloughed. They carried on.

Until Addenbrooke’s got back in touch with my father and said that one of the other aneurysms they’d found, behind his left knee, could now be operated on. They’d put it on hold during the worst of the pandemic, but it was large enough to be dangerous and so he went back into hospital early in August.

I couldn’t visit until he was back at home. My father looked drawn, a kind of yellowish pallor, and that eyes-wide-open look he has when the vulnerability seeks some recognition. We went to sit at a distance outside. He, my house-moving, bookcase-making father, relying on a Zimmer frame. His left leg swollen to twice the size of the other and a fascinating palette of mustard yellow, gentian violet, blood red and greyish white. ‘It’s a lot less swollen than it was,’ Kath said. My father said, ‘But it hurts a hell of a lot more than the other times.’

The story of this operation, this hospital stay, was more troubling. On the whole, he again found the staff to be as exemplary as before: surgeons, nurses and physiotherapists all excellent.

Unfortunately, during the procedure the surgical team had cut a nerve and he’s lost feeling in his lower leg. That is unlikely to recover. The swelling seemed to have worried the staff, who’d ordered a scan, which found nothing. The greatest irritation was that, once again, the discharge was a feat of disorganisation. He was told he could leave at two, and the scan would be done at his local hospital; then he was told the scan – which was meant to have been the day before – would be done before four at Addenbrooke’s; he was eventually scanned after five; the drugs still weren’t ready, but would be in two hours; he and Kath finally left at nine, with the pain killers couriered to them the following morning.

Of course, the NHS is under even more pressure now – trying to make up for all the cancellations and delays. Trying to keep down the cost of the coronavirus, in terms of non-Covid deaths due to undiagnosed complaints and postponed procedures.

But this is our flagship. The one thing that has united the dis-United Kingdom in the years since Brexit, which has become all-the-more precious during the pandemic. The coronavirus creed wasn’t so much about saving lives as about protecting the NHS. That, if not our neighbours, we could all rally around. Thank you! #OurHeroes! They have been heroic. I have clapped – not because I felt I ought to but because I have felt humbled and grateful for all those people willing to and capable of doing their utmost for the public.

So, this is not to denigrate or demean the staff, nor indeed to denigrate or demean an institution of which we as a nation are justly proud.

The fact of the matter is, though, that this fine institution, for various reasons, is not perfect. Further, this institution has some systemic problems which hamper consistent improvement.

To start with my father’s bugbear, which is far from life-threatening and could be seen as minor, but which has repercussions that can have negative consequences.

Research suggests that memories of an event are heavily weighted to reflect the emotional impact of the last or latest episodes. (The peak-end rule[2].) Thus, my father is inclined to recall his hospitalisation through the lens of a seven-hour wait. He was fortunate in that his partner was with him and able to take him home at nine in the evening; for other patients this could have proven particularly challenging.

Nonetheless, when he struggled out with his Zimmer frame, experiencing considerable pain as he attempted to put weight on a leg very swollen, badly bruised and with a slowly healing sixteen-inch wound on the back, Kath, of a similar age, had to carry his bags and medications. Hospitals are maze-like and the distances from wards to exits can be long and confusing. In the pressured conditions of the post-lockdown world, there was no one to help them, let alone push him in a chair.

One of the most upsetting images in East Asian culture is that of an elderly fatherly figure, sick or wounded, left to navigate the world on his own. That image cannot be so profoundly disturbing in the UK, which begs the question: have we lost a moral compass? Because the policy of the NHS has long been to push the elderly into the community once their lives are no longer immediately threatened and, with the backlog of procedures caused by the postponement of surgeries, this policy is even more in evidence now.

James Meek, in a carefully considered and well-researched piece for the London Review of Books, analysed both the NHS and the WHO in the light of the pandemic. He writes:

[I]n Britain, […] the expectation each winter is that hospitals will struggle to treat the surge of frail old people; the elderly are pushed back into under-scrutinised private care homes, or into a community care and public health system whose budget to help them has been cut to the bone. When the virus came, this dynamic intensified. Tens of thousands of old people were sent home or into residential care without being tested for coronavirus. They infected others. Many died. […] [D]espite efforts at reform, politicians and public remain complicit in the fantasy that ‘healthcare’ equates to hospitals, doctors, drugs and machines, and ‘community’, meanwhile, has become a euphemism for ‘You’re on your own.’[3]

Meek’s view is that the emphasis on ‘tech-fixes’ and hospitals, while playing down the importance and cutting funding for social care, leaves public health in not just a sub-optimal position but one that is not fully fit for purpose. The devastating crisis in care homes over the past months is just one, and now by far the most salient, example of the failures of the communal health system. Laurie Garrett, a pandemic expert through decades of investigative journalism, has made similar critiques of the situation in the USA. ‘America has never been sufficiently invested in public health. The riches and renown go mostly to physicians who find new and better ways to treat heart disease, cancer and the like. The big political conversation is about individuals’ access to health care.’[4] As Meek says, ‘The divide between communal health advocates and tech fixers represents a deeper choice: between actions that aim to help an individual, so may indirectly help everyone, and actions that aim to help everyone, so may indirectly help the individual.’[5]

Dr. Camara Jones and her colleagues use a ‘Cliff analogy’ to illustrate ‘three dimensions of health intervention to help people who are falling off of the cliff of good health: providing health services, addressing the social determinants of health, and addressing the social determinants of equity. In the terms of the analogy, health services include an ambulance at the bottom of the cliff, a net or trampoline halfway down, and a fence at the top of the cliff. Addressing the social determinants of health involves the deliberate movement of the population away from the edge of the cliff. Addressing the social determinants of equity acknowledges that the cliff is three-dimensional and involves interventions on the structures, policies, practices, norms, and values that differentially distribute resources and risks along the cliff face.’[6]

This analogy demonstrates where public health, even in the UK where the provision is socialised, lets down the very people it is designed and funded to serve. The high mortality rates in this country generally and particularly among certain more disadvantaged groups of the population can be seen to stress the absence of a comprehensive culture of health care.

In the UK, social or community care is funded predominantly by local councils. While the Government has called for nationally consistent levels of care across councils, their support for the local bodies has been cut. In fact, adult social care spending fell 6% between 2009–10 and 2016–17.[7] That might seem a relatively small decrease, but the spending was already at the bare minimum. With an aging population, increasing rates of chronic disease (diabetes as one notable example) and mental health disorders, there are ever greater demands on the system. Now that obesity has been seen to be so damaging to long-term health (it has taken COVID-19 to make a well-known fact amenable to public policy-making), the UK government has demanded action - which local councils will have to bring into force.

In addition, public health outside hospitals would, in an ideal environment, play a preventative role – helping to reduce rates of drug dependency, certain mental health complaints, obesity and other related diseases. A properly functioning and well-funded communal health system would take the pressure off the hospitals by helping to enhance the general health of the population. The problem is, according to Meek, that tech-fixes are sexier. And not just to governments, but to taxpayers.

This is an on-going systemic problem. But it really is a problem: the big democracies like the UK and the USA have suffered shocking high mortality rates during this pandemic. Part of this may well be due to poor decision making, inadequate responsiveness and a certain amount of failure among some members of the community to co-operate, but the fact that poorer nations with good grass-roots, low-tech community health schemes have fared better is a sobering reality check. Meek writes in his London Review of Books article, ‘The formerly colonised countries, with their thinly resourced health systems, have been spared the worst; it is the old colonisers, with their ventilators and ECMO machines, that have suffered. Senegal has had far fewer deaths than France, the Democratic Republic of Congo far fewer than Belgium, Kenya far fewer than Britain.’[8]

My father has been at the receiving end of the lack of funding: his surgeon asked that a District Nurse attend him at home to change the bandage on his legs. The visit was booked for the Sunday after his discharge from hospital, but no one turned up or contacted him until the following day. When the call came, they asked if he could get into his local doctor’s surgery. He said he could, but that his surgeon had wanted him to remain at home for a few days. The District Nurse did visit him – next time, though, he will be heading into the GP’s surgery.

There are further issues in the UK, than the lack of community health provision, however. The NHS is not just one institution, with a single figurehead or decision-maker. Nor is it a series of devolved bodies responding to local needs. It is a fragmented kaleidoscope of inter-dependent and overlapping entities. Just a glance at NHS Providers report[9] into the various bodies and their different responsibilities, in addition to the conflicting and unrealistic statements made by the government with regard to workforce serves to demonstrate this beyond doubt.

This complexity and lack of coordination makes any form of systemic improvement or general strategy challenging. One pertinent issue in the response to the pandemic was the lack of PPE. It was generally understood that the UK was a world leader in pandemic preparedness.[10] So how did this deficit come to pass? The BBC’s Panorama programme investigated the problem[11], with the end result appearing something of a perfect storm. Money saving, miscommunication, confusion over responsibility, mismanagement – the responsibility lies more in disorder than individual failures, though that was also in evidence. The government’s own explanation for the problem[12] further highlights the fault-lines in the procurement process. Not the Leviathan but disorganised fragments.

The large-scale strategy failures impact the potential for smaller scale improvements, too. Let’s return to my father’s long wait for his prescription. The Care Quality Commission’s research in 2019 found that although the vast majority of patients felt that they had been shown care and respect by staff, that they had been treated professionally and trusted the doctors and nurses, there remained areas for improvement:

Patients consistently reported less positive experiences for the themes of: communication at the point of discharge and consideration of the support they will need after leaving hospital.

Results for information sharing in relation to medicines, including: explaining the purpose, being told about possible side effects and being given written or printed information all declined this year.[13]

Indeed, 71% of inpatients were delayed on discharge because their medication was not ready.[14]

Dive into this further, and you find that hospitals manage prescribing in various different ways – sometimes with designated pharmacy staff for individual wards and so on. The pressures, which were felt well before the pandemic, to free bed-space with increasing patient demand, lack of social care and limited resources, meant that hospitals as well as patients suffered as a result of these delays.

One NHS Trust, though, has mitigated the problem: North Tees and Hartlepool. ‘The answer lies,’ according to the Trust’s Director of Medicines Optimisation, Mojgan Sani, ‘in pre-labelled packs stored securely on the wards in automated Omnicell medication dispensing cabinets.’[15] This is a technological fix, which has cost money to implement, but Sani says that it has dramatically reduced the delays. And freed bed space. More importantly, perhaps, it has also freed up nursing time – instead of chasing prescriptions or collecting them from the pharmacy, staff could focus on caring for the patients.

A win-win solution – but considering the finite-resource that is the NHS, fragmented as it is into regions, overseen by overlapping bodies, one wonders how likely this solution is in the current emergency climate to be generally adopted.

It seems to me that restructuring could be advantageous – and indeed the government has recently scrapped Public Health England, one of the various bodies involved in the health system, and replaced it with a new body, a National Institute for Health Protection, formed from a merger of PHE, the Joint Biosecurity Centre and NHS test and trace. This has been greeted with shock and dismay. Not least because it comes in the middle of the on=going pandemic. Surely, this presents a task like rebuilding Neurath’s ship: plank by plank while on the water. It is especially concerning in that, at time of writing, according to The Guardian, ‘the government admits it does not know who will take forward PHE’s work in tackling obesity, reducing smoking and tackling health inequalities, as the new institute will not be responsible for them under the current plans.’[16]

Whatever the structure, additional funding – no surprise or contention in making this claim – would also help. Not just, though, to the NHS – for which the public would support, if not call for, a greater share of the pie – but also, as critically, for community health. Less sexy, less campaign and manifesto friendly, but just as if not more important for the future health of the nation.

It is a shameful truth that false promises to divert extra money to the NHS added weight to the Brexit campaign. Now, with the service having coped with an unprecedented crisis – albeit in part by putting the responsibility of some aged patient onto an ill-equipped and severely under-funded social health system – and having become a far more precious and heartfelt icon in the minds of the public, it seems likely that politicians will see the NHS as crucial factor in their plans to regain or retain popular support.

This, frankly, is terrifying to me. While extra funding for public health would be excellent, the use of the NHS (one can’t imagine that community health will be granted the same prominence) to manipulate voters is potentially hugely detrimental. Our flagship health service must not be used as a political football. We, the public – whose taxpayers money funds it and whose lives can often depend upon it – and they, the superb, the heroic, staff, deserve better than that.

Firstly, one can imagine that promises to invest in tech-fixes would be seen as vote winners, when space, beds, staff and reorganisation to promote smoother running (not greater efficiency) would surely prove of more benefit to those working in and those using the system. It should be the case that both staff and users are involved in conversations about what would help, rather than politicians making electoral decisions based on what appear to be the best PR.

Secondly, where will the money come from in an economy reeling as a result of the pandemic? Schools, which need support themselves – and probably also require substantive reorganisation? Not community health, surely? The right-wing press will no doubt call for a transfer of resources from the International Development Fund (which is currently equivalent to 10% on the NHS’s budget per annum). I have argued strongly for the importance of that allocation[17] and will not cede that here. Likewise, I would argue that the Arts, too, should be supported to ensure that the UK’s wonderful cultural heritage lives beyond Covid-19 and the resulting depression.[18] Structural projects and the like will be seen as sacrosanct in the effort to retain jobs, support the construction industry and so on. Taxation? In a depression? Well, I would contest that the highest-rate taxpayers could be required, in line with Daniel Markovits’ suggestion of a one-off wealth tax in the USA[19], to provide some short-term assistance to the nation in this time of need. For the richest few to show that, yes, we really are all in it together, could be not just a valuably pragmatic solution to real-world problems, but also help to heal some of the psychological effects of the systemic injustice of severe inequality[20] in society which have been exacerbated by the coronavirus pandemic.

As for my father, he has all he needs for now. The pain, despite slow release opiates, is intense as, for the third time in just over a year he begins the arduous process of recovery from major surgery. He knows that in the not too distant future he will be called in to have a similar procedure carried out on his other leg. That prospect, I am sure, he and his partner will keep in the back of their minds. For the time being, his will is strong, Kath’s love and care for him is powerful and, today, the sun is shining.

[1] https://www.nhs.uk/conditions/aortic-valve-replacement/ [2] “[Daniel Kahneman] attributes this cognitive tendency to evolutionary purposes. He states, ‘Memory was not designed to measure ongoing happiness, or total suffering. For survival, you really don’t need to put a lot of weight on duration of experiences. It is how bad they are and whether they end well, that is really the information you need as an organism.’” – quoted from https://positivepsychology.com/what-is-peak-end-theory/ [3] The full article can be found here - https://www.lrb.co.uk/the-paper/v42/n13/james-meek/the-health-transformation-army [4] This quotation is taken from a piece in the New York Times, which you can find here - https://www.nytimes.com/2020/05/02/opinion/sunday/coronavirus-prediction-laurie-garrett.html [5] As before - https://www.lrb.co.uk/the-paper/v42/n13/james-meek/the-health-transformation-army [6] Jones CP, Jones CY, Perry GS, Barclay G, Jones CA. Addressing the social determinants of children's health: a cliff analogy. J Health Care Poor Underserved. 2009;20(4 Suppl):1-12. doi:10.1353/hpu.0.0228 [7] See Institute for Fiscal Studies report here - https://www.ifs.org.uk/uploads/BN227.pdf [8] Again, this is taken from his article in the LRB - https://www.lrb.co.uk/the-paper/v42/n13/james-meek/the-health-transformation-army [9] You can see the relevant page here - https://nhsproviders.org/a-better-future-for-the-nhs-workforce/fragmented-responsibility [10] In 2017, the NHS published a comprehensive document on how it would deal with an influenza pandemic. You can read it here - https://www.england.nhs.uk/wp-content/uploads/2017/12/nhs-england-pandmic-influenza-operating-framework-v2.pdf [11] A detailed report on its findings is here - https://www.bbc.co.uk/news/newsbeat-52440641 [12] The Institute for Government published the explanation, with neat chunks for politicians to Tweet, here - https://www.instituteforgovernment.org.uk/explainers/nhs-procurement [13] The summary and full reports can be accessed here - https://www.cqc.org.uk/publications/surveys/adult-inpatient-survey-2019 [14] Ibid. [15] Sani explained the system in a piece for Hospital Times, responding to another patient survey suggesting that 73% of patients were delayed by the prescription process - https://www.hospitaltimes.co.uk/how-pharmacy-can-reduce-discharge-delays-and-free-up-bed-space-across-the-nhs/ [16] https://www.theguardian.com/politics/2020/aug/18/matt-hancock-unveils-national-institute-for-health-protection [17] My blog post is here - https://www.coronaandthecrone.com/post/othersism [18] I offer one view of the importance of the Arts here - https://www.coronaandthecrone.com/post/high-culture-vulture [19] Markovits explained his proposal in a piece for the New York Times - https://www.nytimes.com/2020/04/21/opinion/coronavirus-wealth-tax.html [20] My response to Richard Wilkinson and Kate Pickett’s powerful indictment of inequality, The Inner Level, is here - https://www.coronaandthecrone.com/post/the-problem-of-tall-poppies

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