September 1, 2020

It’s become the thing to do after any interaction with the NHS, be it a broken wrist or cancer treatment, to post about our experience with a hashtag. During the pandemic, public displays of NHS love have soared — with murals, flags, homemade posters and, of course, communal clapping on Thursdays. For many, it was a source of solidarity; no matter how bad things get, at least we have the NHS. That’s what we do in public, anyway. In private, even the most progressive people, solid Labour voters, will share stories about incompetence, bureaucratic indifference, misery and tragedy. We hold two contradictory thoughts in our head: celebrate “our NHS”, but for God’s sake, try to have as little to do with it as possible.

I have two personal stories to tell, one short, one long. In 2015, my aunt, who was in her 70s, was meant to have an operation on her jaw. This was to correct an earlier operation that had been botched so badly that she could barely open her mouth. It was repeatedly postponed but finally the day came: she was on a bed, about to go into theatre when she was informed that there had been a mistake and it had been postponed again. She went home in bewildered tears.

Eventually she did have her operation, which involved a tracheotomy. After a long convalescence, she was discharged from Guy’s Hospital in London. A few days later, my aunt heard a pop and noticed that her tracheotomy had started weeping blood. The visiting nurse looked it over and said it was fine. That night, she bled to death while a friend watched helplessly.

My wife’s story is longer and more involved, but in its way equally damning. In 2016, she developed intense chest pains. She began to lose weight rapidly, couldn’t climb the stairs in our flat and was coughing up blood. She visited the GP three times but each time was told there was nothing serious wrong; the blood was from a raw throat from repeated coughing. The symptoms did not go away, so she went to A&E at Lewisham hospital.

Here, after a scan, she was diagnosed with pulmonary embolisms: blood clots in her lungs, a potentially fatal condition. She was put on blood thinners to break the clots down and prevent more from forming. Since then she’s had constant problems with her lungs, including pneumonia, but despite being passed from haematologists to pulmonary specialists to neurologists to more respiratory consultants, nobody knows or seems to care what caused the clots.

When Covid came round she was deemed high risk and we have been doing our best to isolate — which is not easy, as she became pregnant in November. She was referred to a high-risk obstetrician, who told her that the William Harvey hospital in Ashford would be informed of her condition.

We had a healthy baby girl at the end of July. I won’t go into too many details about the birth, only to say that it was traumatic and not handled well by the midwives. One of them, rather than waiting for the placenta to come out naturally, was tugging at it, despite my wife in agony pleading with her to stop, until it tore. Our daughter was whisked off to the resuscitaire twice because she was having trouble maintaining her body temperature. In fact, the room she was born in was freezing because the window was broken. Later she developed an infection from a botched cutting of the umbilical cord.

Because of the danger of blood clots and the pain she was in, my wife needed a doctor to see her, but 10 hours after giving birth, neither my wife nor our daughter had been examined. By this time, she needed her blood thinners, but despite asking for them repeatedly, they never came. She was meant to stay in hospital overnight but we didn’t feel comfortable being repeatedly ignored in the stifling hot ward during a pandemic, so went home.

We came back the next day. Our daughter was checked over by a pediatrician. But still nobody would attend to my wife, who could barely walk and was terrified of blood clots. A midwife asked her lots of questions, mainly about breastfeeding. My wife’s concerns about her insides were dismissed as “anxiety.” We went home again.

The pelvic and abdominal pain had increased the next day, my wife couldn’t walk and was worried she might have an infection from the torn placenta. She contacted her midwife who told her to call 111. My wife spoke to a doctor who said, no, she should speak to the midwife. Eventually she was referred back to William Harvey hospital’s Ambulatory Care, but nobody there knew what to do with her. They ran blood tests for infection which came back negative but also indicated high D-dimer levels, suggesting potential blood clots. They scheduled an ultrasound for DVT for five days later then sent her to Maternity Daycare because of her pelvic and abdominal pain. The team here also didn’t understand why she had been sent to them. Eventually a young Greek doctor took pity on her and conducted an examination. He then took a swab, a urine sample, and consulted some surgeons on her behalf.

The following Monday, when my wife called the hospital for the results of a swab and urine sample, she was told they had no record of her. The women on the phone didn’t understand why someone in my wife’s position would have been sent to Maternity Daycare and more or less implied that she was delusional. More than a week after giving birth, she had a scan and, thankfully, did not have blood clots.

It’s not as shocking as my aunt’s story but my wife was in pain, needed help and had a potentially life-threatening condition — yet she was passed around with nobody taking responsibility. She spoke with dozens of people who all gave her differing advice. There was no communication between the consultants who knew my wife’s case and the hospital staff. With every person she dealt with, she had to start from the beginning.

Anyone who has any experience with the NHS would see this as fairly routine, bad but not shocking. My wife’s American family finds the whole thing baffling: why can’t you make an appointment with the specialist you saw before? They don’t understand that once you have been discharged from one department, then it’s go back to Old Kent Road. You must start again with your GP, a call to 111 or a visit to A&E. Our Polish friends think the whole thing is a joke and go home for any medical treatment.

But at least it’s egalitarian, right? Not like that awful American system. Well, it is and it isn’t. Money won’t get you very far but getting to see the right person takes an enormous amount of time, persistence and ideally a sharp analytical mind and a good grasp of the English language. My wife keeps detailed notes of everybody she speaks to. Our recent experience took the best part of a week, and I’m lucky to be in full time employment, meaning I get two week’s paternity leave. I can’t imagine that an Uber driver or small business owner would find the time.

Several doctors have suggested my wife file a complaint, but if we didn’t complain about the death of my aunt, which we should have done, then we probably won’t about this. The ultimate arbiter, the Parliamentary and Health Service Ombudsman (PHSO) has a woeful record: it had 103,965 enquiries in 2019-2020, of which it investigated a mere 1,493 complaints. The maternity ward at William Harvey has been a scandal for a number of years now for its “outcomes” — i.e. babies dying. It’s an almost heretical thing to say but I’m now at the stage where I simply don’t trust the NHS.

From talking to friends, family and neighbours, our experiences are not unusual, so why do so many British people regard the National Health Sservice as something close to a religion? Well, it’s there at the most critical moments in our lives: births, illnesses and death. With the BBC going the way of the Church of England in relevancy, the NHS is one of the last things that binds us together. If we admit to ourselves that it isn’t very good, then what else would there be?

But also, NHS worship does have a grain of truth in it: many doctors and nurses are heroic, delivering great care under difficult circumstances. When I was treated successfully for testicular cancer by the team at St Bart’s in London, it was like getting the keys for the executive washroom. Blood tests came back in half an hour rather than a week. The cancer nurse gave me her mobile number and said I could call any time if I had any concerns. The chemotherapy was awful, but knowing that I was in good hands was reassuring. That was 15 years ago but they still check up on me every year.

Why can’t it always be like this? Of course, more money would help, but anyone who has had regular dealings with the NHS knows the organisation has severe bureaucratic problems. There are lots of people working in the healthcare system who seem to consider the patients the problem, and all the money in the world isn’t going to change the culture in some departments. The inefficiencies are hugely expensive: think of all the highly-paid professionals my wife spoke to and how much it cost the NHS (that’s you and me).

Who would even attempt serious reforms when previous attempts at reorganisation such as the Conservative’s market reforms in the 80s or Labour’s PFI by all accounts made things worse? There are no votes in it and so, after years of being accused of trying to privatise the health service, the Tories have seized their moment with the pandemic and wrapped themselves in the NHS flag, all the better to hang on to newly-acquired working-class seats. If I hear Boris saying “our NHS” one more time, I will throw a brick through the television.

Bizarrely, during the early days of Covid-19, the message was to protect the NHS, not the people which it is meant to serve. This led to patients who had not been tested being discharged from hospital into old people’s homes, and so spreading the virus among the most vulnerable. It also led to cancelled operations and cancer treatments, and people afraid to come forward with ailments, some of which might be serious, for fear of overloading the system. Sentimentality towards the NHS costs lives.

At some point, with our ageing population and the increasing costs of healthcare, we will have to have a grown-up debate about how this is to be paid for. Once we accept that the NHS is not a deity, we stop clapping and painting murals or sharing stories about Donald Trump trying to buy it — when we’re honest about its failing as well as celebrating its successes — then maybe one day we’ll have a health service that befits one of the world’s wealthiest countries. I fear it won’t be for some time.

One encouraging thing, however, is the growth in low-cost private practices, mainly catering to East Europeans who don’t have time to deal with the NHS. Maybe this is the way to improve things: the gradual development of a parallel system for routine ailments with the full NHS for more serious stuff — perhaps, and this is a shocking thought, with some kind of insurance that covers both private and public care. If there’s any hope it lies with the Poles.