First things first. I’m sure every reader of this thread will join me in sending their thoughts and compassion to John and Judith. This is a situation many of us have been in and none of us would wish on anybody. John is to be commended for turning their awful experience into a thread which may help others, not least by getting them to see that anybody’s poor experience of the NHS has not been unique.
My own experience of the NHS certainly echoes John and Judith’s, albeit in circumstances less extreme. My mother – then 89 – went into hospital two years ago. What she needed was very simple, particularly when compared to Judith’s need for a haemofiltration machine. My mum simply needed regular doses of oxygen to help with extreme breathlessness and coughing, brought on by emphysema, the result of 50 years smoking.
The ambulance took her to the Accident & Emergency Unit, she got her oxygen and all seemed well. Indeed, within an hour or so, she was sitting up telling jokes and dictating what the assembled family ought to be doing instead of standing around her bed looking doe-eyed. So far, so good.
Later that night, she was transferred, as expected, to a ward. It was spotlessly clean, well-run and her treatment continued as smoothly as it had begun.
Then, for no explicable reason, my mother was transferred to a different ward. I should explain to our non-British friends, that an aspect of British culture writ particularly large in the medical world, is that information about your own body is rarely given to yourself or your family. We all understand that information is power and therefore, bureaucracies hoard information. But believe me, nobody this side of the CIA hoards information like the British medical fraternity. So polite requests as to why mum was being moved to a different ward and why her treatment - which we had been assured would only have to last 24 hours - was clearly going to last longer, were met by stony silence and blank expressions. So we started to worry.
The new ward gave us ample grounds for further worry. It was dirty – there were disused dressing wrappers and piles of fluff and dirt all over the floor – the attitude of the staff varied from professional to sloppy, with most being at the sloppy end of the spectrum and within a couple of days, I realised that some of the staff handling the oxygen equipment did not know how it worked.
It got worse. It gradually became clear that the staff were split into factions, to some extent on racial lines but more on hierarchical lines. They wore different coloured uniforms, utterly meaningless to the layman but desperately important to many of those wearing them. Greys did not talk to blues, dark blues clearly thought themselves vastly superior to light blues and nobody had any time for greens – who I gradually gathered were trainees.
One day, a member of staff asked me to connect the oxygen cylinder to my mum’s breathing tube. I have to say that I did so – although, as a layman, God knows what the consequences would have been if I had got it wrong. But my mum badly needed oxygen at that moment, it was clear from the staff member’s fumbling that she didn’t have a clue how to work the appliance and by pure chance, from repeatedly watching the process, I did know what to do. But what if I had got it wrong? Or if a layman who had not been watching the procedures had been asked?
Incidentally, you’ll note I’ve been saying staff members and not nurses. After one visitor had the temerity to use the term nurse towards somebody on the staff who apparently wasn’t a nurse, we humble visitors were lectured by some senior management figure (colour purple, I think), as to the precise method of address for each rank / colour of uniform. Meanwhile, the dirt accumulated on the floor, the refuse bins for medical debris overflowed, a little knot of Jamaican (staff? nurses?) pointedly talked in loud, incomprehensible patois to the elderly white English patients and on several occasions, the windows next to my mum’s bed – 89, remember - and sitting up in a thin night-shirt and a dressing gown, were frequently left wide open on bitterly cold, windy days.
I could go on and on but instead, I’ll echo something John describes in his initial post, above. Which is that you had to advocate your loved one’s case.
He’s right. In fact, as I think John is saying, you have to advocate, pressurise, lobby, pursue anybody you had already lobbied, keep agitating and above all, build political alliances and represent your loved one if they were to get even the basic treatment and respect. I’ll repeat that: you have to build alliances with selected members of staff to obtain even the most basic treatment. Apart from being obscenely wrong, this meant you had to have the political attributes necessary for all those skills. Having worked at a high level of journalism for 30+ years, I was fortunate enough to have them. But what about those people who don’t? I was appalled to see a gentle, elderly man, desperately upset by his wife’s suffering, being bullied by the middle-management mafia that periodically blundered into the ward and, amongst other things, being scolded for bringing in special food he had obviously gone to some trouble to prepare for her. Disgusting.
By an absolute fluke, I happened to know the couple’s MP – they lived out of the area and part of the reason for their mistreatment seemed to be the politics involved in the hospital “losing” a bed to somebody effectively outside their budgetry control – and courtesy of my MP friend, the lady was moved to what I was assured was a better hospital. But the prevailing impression remained that of a small-minded, fractious and at best semi-competent world, where you might get treatment for your loved one if you knew the name of the game and how to play it. Even then, if you were unable to be physically present for as much time as waiting hours allowed, you probably wouldn’t win the battle.
I mentioned the middle-management mafia. This was the icing on the whole sick cake. Periodically - but not too frequently, so as to not get themselves embroiled in the reality of ill people - small brisk squads of fast walking, power-dressed management types, clearly born with clipboards in their hands, would briskly descend on the ward. Again, long experience of the media – wherein accountants and middle management Non Jobbers / Non-entities, have long since ruled the roost – meant that I recognised the type on sight. But God help any patients or relatives who didn’t recognise the type and therefore know how to deal with them. These middle management raiding parties walked and talked in hierarchical formation and ever-conscious of hierarchy, even stood in formation, with the Head Nonentity standing a step or two ahead of his / her minions, while they listened intently to No 1’s management-speak as it was unleashed on staff and on rare occasions, on actual, err…. patients.
These conversations - in which the words access, task and source were relentlessly used as verbs in that irritating rising and phoney Question? intonation used by most bureaucrats and all teenage girls - would have been painful to behold had they been comprehensible.
One of these scenes, though, produced a wondrous moment. One day, a squad of four – they were always in fours, goodness knows why – middle management Mafioso descended on an elderly lady in the bed opposite my mother’s.
Clipboards clasped close to their sharp suits, their earnest task of the moment was to persuade this lady of the benefits of sleeping downstairs when she returned home, her having been good enough to recover from whatever ailed her, thereby releasing that most prized of hospital management assets, a bed. The lady was in her early 90s and said she wanted to die in her bedroom, surrounded by pictures of her family and other momentos. A reasonable wish, one would have thought. But the clipboards – average age 20-something - found this utterly incomprehensible. Sleeping downstairs would allow her to access (sic) the kitchen. Sleeping downstairs would make it easier for visitors to access (sic) her. And so on and so on, about the glories of access.
Well, access or not, the old girl was having none of it and told the clipboards that she liked her bedroom, felt perfectly happy there and that was that. They eventually retreated, beaten and bewildered by someone by finding somebody over 65 who knew their own mind. No doubt, they discussed her Attitude Problem at great length at a subsequent Task Force De-briefing Session. Watching them shuffle out of the ward while the old lady regained a twinkle in her eye – she knew she had seen them off – was a joyful wonder to behold.
As so often in these situations, it was the lowliest member of staff who was the most helpful. A woman who was a trainee and thus, one of the great unwashed - the green uniforms - went out of her way to help not only my mother but the other women on the ward. She stayed beyond her normal hours and did all sorts of small things that made a big difference to those under her care. As did a man with a rank so low that as far as I could see, he wore no colour at all. He gladly escorted my mother to the toilet many times while the bickering blues / greens / purples, engrossed themselves in their form-filling.
However, we did get a break from the second doctor who saw my mother. The first deserves a thread of his own, but I’d be done for Grossly Incorrect Political Attitude if I started describing his behaviour. But the second doctor actually gave out information. We had to catch him just as he left mum’s bedside and you needed your questions to be sharp and to the point, but if you managed all of that, this man actually told you things. Yes, he actually gave out information.
Again, for the benefit of our non-Brit readers, let me explain that a British medical figure volunteering information on a patient is equivalent to a CIA Suit inviting a posse of JFK assassination researchers into Langley’s inner sanctum, throwing open the files and apologising for keeping the world waiting for 44 years.
So what conclusions are to be drawn from this sad shambles? Firstly, that John & Judith’s and also my family’s experience, are far from unique. Since mum recovered and gave the state back its (?) bed, I have relentlessly questioned anybody with a hospital experience that has crossed my path and believe me, what I have described above is par for the course. Indeed, many, not least John and Judith, have worse tales to tell.
Secondly, I don’t think any of these symptoms arise from the British system being free. I’ve worked for some of the most viciously capitalist companies in the world and every idiocy I encountered in the NHS was highly familiar to me. Neither capitalism or socialism eradicate human stupidity, believe me. Which of them best moderates it for how long, is the realistic issue.
Thirdly, John’s point about resources being rationed is clearly true and here, both political parties have let us down badly. More money poured into the NHS does not equal more facilities. It never has. My medical friends tell me that the best thing that could happen to the health service would the immediate introduction of a strict ANC policy – Absolutely No Consultants, meaning management consultants, with which the system is dripping – and also that the health service is groaning under the weight of middle management and Non-Job Suits of the ilk referred to above. Cut out the blubber and more resources might – might – reach the patients. But even then, nothing is guaranteed.
Again, this will be a common experience for anybody who has worked in the private sector. But at least in the public sector, you had a chance for criteria other than profit being used to determine organisation and policy. I say had because the other point my medical friends make is that the creation of NHS Trusts has immeasurably complicated matters and blurred the private / public lines within the health service.
Fourthly, the incompetence beggars belief. As does the cover-up industry that follows in its wake. A distant relative of mine died in a local hospital a few years ago. There were strong grounds for suspecting incompetence, but as soon as we asked for the files on her case – a long-established right for relatives – they were “lost” faster than you could say well, that’s highly convenient.
New Labour’s solution to all of this, which seemed sensible at the time, was to put a high proportion of the last big surge of extra money into the NHS into salaries instead of into facilities. In the naïve belief that investment in facilities was on-going and that increasing salaries could only improve morale and self-respect, most of us thought this was the right thing to do. But on the basis of the un-professionalism, lack of care and downright sloppiness I witnessed, I cannot see how the salary increases made any difference whatsoever. Although I am told – I don’t know this for a fact, but my sources are good – that the extra money went to the higher end of the system. Well, no surprise there.
So where do we go from here? Not, absolutely not, into another review of the NHS. Few West End plays have been reviewed less times than the NHS. On the basis of what I witnessed, I will never vote Labour again and those of you who want to get a flavour of how awful the system is before you learn first hand, might want to take a look at this site:
My family’s story ended happily, but this too, throws light on the state of the NHS. I said that my mother’s being taken into hospital was caused by breathlessness, brought on by emphysema from 50 years smoking. This, though, is not the whole picture.
In 1985, I worked with an American photographer who had lived in the far east and parts of the third world. No Ugly American, this one. He had absorbed a lot of Buddhist teaching and developed an immense knowledge of traditional medicine, knowledge that far pre-dates the product-dispensing industry that much – not all, but much – of western medicine has become. This in turn, had led him to use homeopathy, one of the major self-healing disciplines and I was so impressed by his experience, that I too saw a homeopath. I haven’t seen a doctor since – ie: in 22 years – and nor have any of my family, who also switched to homeopathy. It was a homeopath who got my mother off smoking – at 70, after 50 years of smoking – and my mother’s only time in hospital since 1985 was this time she needed oxygen, which was at the insistence of the homeopath. The homeopath’s view, which I have since had confirmed by a world expert on emphysema, was that a week’s supply of oxygen was all she needed – not the drugs they pumped into her in the second ward.
In the two years since this occurred, the homeopath has given her natural remedies which have almost entirely lifted the emphysema off her chest and are currently draining it out of her throat via a series of sweat, sneezing and coughing expulsions. The smokers rattle on her chest, built up over a lifetime of smoking, has virtually gone. According to conventional medicine, all of this is impossible, but anybody reading this who has used so-called alternative medicine will recognise the logic.
Exactly what element of which condition is brought out – literally brought out – of the body at what time, varies from individual to individual, as alternative practitioners work on the presumption that each person’s constitution is different as are their medical, emotional, family and intellectual histories, along with every other aspect of their DNA. So treatment is extremely individualised. Those American cousins who dread our socialised medicine (it isn’t, but it would require a book, never mind a thread, to explain that) should take heed. Alternative medicine is based on individuality – you know, that value your country is meant to respect.
I say so-called alternative medicine because most alternative knowledge and practice far pre-dates conventional western medicine. But the power of the drug companies and their political allies means that we assume the western way is the only way. It isn’t. Both systems, or more accurately, ways of thinking, have much to learn from each other. Most alternative practitioners readily accept this, but few practitioners of western medicine do other than grudgingly accept that their might be something in acupuncture, herbalism, homeopathy, etc.
The hospital my mum was in had a resident homeopath and the administration had asked the staff to respect patients who had a history of using alternative medicine. Well, that was the theory. When I took some homeopathic remedies in to the ward and attempted to leave them with the nurse (staff member? Grey? Green? Blue? Pink?) on duty that evening, she looked at me as if I had asked for carnal knowledge of her youngest daughter.
When she finally grudgingly, accepted them, she left the remedies next to a computer – homeopathic remedies must not go near computers, microwaves or mobile phones, as these disrupt or totally destroy, their potency - so I started smuggling in remedies and sneaking them to my mum when the staff were not around, which was most of the time.
I am absolutely convinced that it was the remedies that led to my mother’s recovery from her breathing difficulties. Indeed, one medical man I subsequently consulted, the emphysema consultant I mentioned above, told me that one of the medicines she had been put on in the second ward, had a long track record of becoming addictive and would have done untold damage had she remained on it thereafter. As it was, the moment she got her out of hospital – or McDonalds, as we christened it, due to their doling up exactly the same medicine for patients, regardless of their age, build, history, etc – my mum dumped the pills and switched to homeopathic remedies that undid the damage the pills did. She is currently 91 and out shopping, burning up my credit cards as fast as she can pull food off Marks & Spencer’s shelves.
One final point. My mother’s experience matches something else Judith has endured, which is that after the necessary politicking, whole chunks of the actual treatment can - my comments about alternative medicine notwithstanding - be fine. Now, don’t we all recognise this? Is this not the syndrome whereby the actual work is the easy bit and the problem is the political nonsense that intrudes on it? The only remedy for that is constant exposure and so I return, full circle, to where I began, to John’s general belief in the vital importance of the internet in exposing bad, poor and corrupt practice within institutions and to his starting this particular thread, for the benefit of others, in the face of appalling treatment from those whose mission is meant to be healing. How many of us would have such generosity of spirit in similar circumstances?