Saturday, 7 December 2013

A Slow Burning Tragedy Courtesy of the NHS

I rarely write about things that are deeply personal to me. Certainly, I don’t often write about the important things in my life such as my family. I have never, as I recall, written before about the difficulties those closest to me suffer on a daily basis but recent events have brought me to the point where I’m using my blog to do just that. I want to write about the NHS and its systemic failure to deal properly with one particular case.

My sister has been ill since her teenage years when she had her gall bladder removed. At the time, the surgeon said that my sister was the youngest person he’d known that needed to have their gall bladder removed. After the operation, he told us that he’d found so many thousands of tiny stones that he’d had difficulty getting them all out. He warned us that there was damage done that might cause problems for my sister in later years.

The surgeon was right. There have been brief periods of time when she has been well but ‘well’ is such a relative term. My sister has rarely been so well that she can do any amount of physical exercise or do the things that most people would call ‘living a full life’. Simply travelling on a bus can result in days of illness. Strangely, she can ride a bike which doesn’t bring on the symptoms but that is about the extent of her activity. Bending over, lifting things, or twisting motion around her upper body all seem to trigger flare-ups of the condition, which is symptomized by intense pain and a heaviness under her left side ribcage, nausea, fevers, and other things too unpleasant to describe. Two weeks ago she bent down and she’s now endured a fortnight of pain, sickness, and the rest...

Over the years, the NHS has tried vaguely to understand and treat her problem. It sometimes feels like I have lived my entire life against a background of her hospital visits and the usual disappointment of her returning home after another consultant has passed her over to another department. She once had a test to check how quickly food passes through her digestive system. Hours after she’d eaten the 'special sandwich', the doctor running the examination expressed his surprise that the food still hadn’t left her stomach. It was the slowest example of stomach emptying he’d ever seen. Yet doctors never put a name to it. Gastroparesis was something we only discovered recently but that was only through American websites. Nobody on the NHS has ever thought to refer her to a dietician to see if we can help her through better food. My father also had his gall bladder out but he was on medication to help digestion which doctors, for some reason, have not thought to give my sister.

Occasionally, we get a doctor who is caring and seems interested. One doctor thought she might have something called Sphincter of Oddi but when he left (he was a locum), his replacements didn’t recognise the term or want to follow it up. Another caring doctor (a wonderful young Scot) thought she had the classic symptoms of gall stones. He was fascinated when she told him that she hadn’t had a gall bladder for ten years. He wanted to refer her to a specialist but, being another locum, it never transpired.

Meanwhile, whilst many drugs have been administered, the true reason for her illness has never been explained. Nobody actually seems interested or concerned that a person’s entire life is being destroyed.

In the past two years, things have got worse. Our local NHS practice has changed and new doctors have arrived. One doctor doesn’t seem to believe that my sister has anything wrong with her and one day removed nearly all my sister’s medication. Within a fortnight she was extremely ill. The same doctor took her off tablets prescribed by a consultant for fibromyalgia, leaving my sister in constant pain. Another doctor reinstated the tablets saying she should never have come off them (the closest we’ve ever heard one doctor criticising another). A month ago, one doctor gave her something to help her. It did help her until last week a different doctor took her off the same medication.

This is happening week after week, month upon month, like the system has been failing my sister year upon year and even decade upon decade. One doctor contradicts another but all doctors smile behind their enigmatic silence but offer no help.

Why is that? How could that be allowed to continue?

The cruelty of the NHS is in its general indifference to the individual. The NHS is a faceless entity with no compassion. The systemic failure of the NHS to help my sister is partly down to her not having a regular doctor interested in her case or a consultant willing to investigate it properly. It is now a few years since a doctor properly examined her and, in recent months, doctors have preferred to ask about the state of her mental health. This, I suppose, is why I’m now writing, out of a sense of anger at their negligence and presumption.

The thing is: I’ve never met anybody so strong or psychologically well-adjusted as my sister. She is articulate and clever but damned by circumstance. Despite enduring things I can’t comprehend, she still refuses to allow it to get her down. She is no less intelligent than me except I had a chance to do a PhD whilst she has only ever had the chance to suffer. She is self-taught historian, fascinated by politics. She is a gifted writer but illness prevents her pursuing her love of journalism. Yet through it all she remains strong and cheerful. It’s her who cheers me up when I feel down because of her health and the fact that I feel so powerless to do anything about it.

Most days I sit here trying to draw funny cartoons or just to ‘be funny’ when a few rooms away, one of the people closest to me is suffering with intense pain, sickness, and fever. She can go days without eating, the pain under her rib cage only made tolerable by a Tens machine sometimes at full power. Today the pain is radiating up into her shoulder and I suspect it’s another attack of pancreatitis (one of the few words doctors do occasionally mention). Locally, the doctors don’t seem concerned. They don’t seem to even believe her. I think they have us marked down as problematic, worse than the drug addicts and benefits scroungers they normally see.

The saddest part is that we’re now considering paying for a private consultation but this is now a state of desperation. It’s £150 for 30 minutes and I don’t know if it would help given that she would then be left back in the NHS system for tests. We’ve paid before. Doctors took an interest until the money ran out. Then the general indifference of the NHS took over as it always does.

People often tell us to ring for an ambulance when the attacks are at their worst. We did that a few years ago. A doctor at the local hospital examined my sister and told her that he was amazed that nobody had felt the ‘something’ in her side which he suggested might be a cyst. He pushed it so hard he later suggest it burst or removed whatever blockage was causing her trouble. She was violently ill that night but so much better the next morning that they discharged her. She was well for a couple of months and it was as if the problem were solved. Except it wasn’t. It comes back every month or three and now doctors won’t even examine her. They just ask ridiculous questions as if suggesting that she’s making all this up. They even suggest she is imagining her problem when I’ve sat beside her mopping the sweat from her forehead. I’ve seen the readouts on the thermometers, the violent sickness, her terrible pallor, and even her fainting when the pain is at its worst. Sometimes even a cup of soup can make her violently ill. She hasn’t eaten a proper meal in months yet doctors have the temerity to suggest that gluttony might be her problem because she’s not stick thin. That’s not just insulting but it’s downright neglectful.

I suppose that’s why I’m writing this. I would like to think that somebody out there reading this has advice or medical experience to know what to do or where to turn. But perhaps that’s just a ridiculous hope and a sign of my frustration. At the very least, I just want to write this now to put it on the record to say that my sister is terribly ill and nobody on the NHS seems concerned or even gives a damn.

After decades of living with this, I’m beginning to feel at my wit’s end. My recent blog silence isn’t just down to working on other things but trying to look after somebody left stranded by the system. There is no pleasure in life when all you see on a daily basis is suffering and you are helpless because the system doesn’t care. I often joke that I should have trained to be a medical doctor than waste all those years becoming a useless Doctor of Philosophy. Then I could have helped her. As it is, I dream of a gastric consultant taking an interest in my sister’s unusual case but that’s fairy tale stuff. It’s the stuff of newspaper stories where something rare is finally diagnosed when the run-of-the-mill medical professionals don’t care to look. In the past, appointments with consultants end up with five minutes with junior registrars, passed back to the doctor, who simply say ‘keep drinking the morphine when the pain is at its worst and don’t bother us again’.

This is a slow burning tragedy of living with the NHS. It’s the tragedy of anybody stuck with complicated symptoms under a system made for the routine. The NHS works wonderfully for the average complaint: a sprained knee or a broken wrist. It appears unfit for purpose when somebody requires investigation and specialist knowledge. We’re so utterly lost in the system, passed from one faceless doctor to the next, that I even found myself suggesting we walk into a Chinese medical centre yesterday. That’s right. Me, a man who believes in neither Gods nor magic, has started to wonder if there’s something in the ancient medicine. Yet modern medicine is failing us. The medical service is failing us. The only chances that seem left for us are those offered by charlatans and mystics and that makes this feel like a very bad place to be.



  1. I am very sorry to read this. The reason that this situation has arisen is the changel of the relationship between a doctor and his patient to that of a civil servant dealing with a parking permit or roadside waste.

    This happened because people were unwilling to accept that medical treatment costs money - big money, in many cases. By burying the burden and raiding the Exchequer's coffers, the problem went away, didn't it? (Oh no, it didn't!)

    My training is in physiology, and I don't do this professionally. However, there is a widespread belief that medical problems can be overcome. I know someone who was the senior doctor at a major hospital who became ill more than ten years ago. Despite every accommodation and advantage having been afforded him, he's still stuffed. Unlike an artifice, which must, ipso facto, be capable of being fixed by repairing or replacing components, the human body is full of mystery. And doctors, who are more than happy to proclaim anything that the like, are reluctant to say "I don't know".

    In your situation, I would consider, if your sister is well enough, a nice long holiday in France or Germany. Pack her EHIC card (and yours, just in case). The costs are charged back to the NHS - don't try it on travel insurance.

    And even if it doesn't help - at least you've had a holiday. I hope you work something out.

  2. Thanks for the comment and you're right, of course, that the body is still very much a mystery. Yet I certainly don't expect miracles. The problem is that there's just nobody there to help. The NHS is a faceless bureaucracy with very few doctors willing to take an interest in a patient and those that do are prevented by the system from seeing that patient again. You can go into A&E, be admitted to a ward, and then thrown out the next day if you can walk. We see locum after locum. Some offer to help but they're rarely here long enough. There's just no interest in the individual. What I see every day is somebody enduring a horrible condition but because she can grit her teeth and endure it, nobody wants to actually get the root of the problem.

    What's upsetting is that I know there are people able to help and who could help. When my father suffered a brain aneurism a few years ago, he received amazing care from the NHS. It was genuinely humbling to see how he was looked after at a research hospital. He underwent cutting edge surgery that saved his life. However, as his condition improved, he was sent back to the local hospital where he was largely ignored, left to sit in a bed, and where he eventually contracted pneumonia and died. And that's my experience of the NHS. Sometimes you're just not quite ill enough for them to really care.

  3. Love for you and your sister. Specialist consultants are greedy bastards. As with all professions these days ITS ALL ABOUT MONEY, its not enough to take pride in doing a job well, no status in that anymore. Best wishes, Sam

  4. I like the idea of a trip to the sun and a visit to the local hospital. Try Torrevieja --probably the best hospital in Spain. Privately run from top to bottom including the clinics in outlying villages under contract to the regional government. The food is raved about as well.
    I found your blog very upsetting. And shaming. Best wishes to you both.

  5. Many thanks Sam. I tend to agree but only because I've tried very hard to make my life about the work and not the money but look how I've turned out. That said, I have nothing but admiration for those at the top of their profession and I don't begrudge them their large salaries. As I've said in a previous comment, I was left humbled by the dedication, skill and care of the people at the Salford Royal when they treated my Dad in their specialist unit for brain injuries. It was when he was moved back into the regular local NHS hospital when trouble began and the reason why he eventually contracted pneumonia and died. My sister, on the other hand, is stuck trying to get doctors to listen: plagued by ill health, unable to get attention or treatment, but just meant to bite her lip and suffer for decades on end because she's not quite bad enough to be considered an emergency.

  6. Thanks Matt. I like the idea of a trip abroad except that foreign food would probably do me in. My father was coeliac and I'm not entirely sure that my sister's problems aren't linked to something like that given that I also can't touch modified corn starch without my insides exploding. Hmmm... Am I being too flippant about what might be a good suggestion? Perhaps I am but it never occurred to me that becoming a health tourist might be the answer when all I want is for her to see a sympathetic doctor who will examine her when she's having a flare-up and send her to be examined before whatever causes this disappears for another few weeks or so. I will, however, run this suggestion past here. Many thanks. ;)

  7. One aid I suggest your sister compiles - and this is essential to a decent diagnosis - is a diary of what's been consumed - both solids and liquids - how she feels, what the state of her stools are, and so on. This should be done religiously.

    When a decent practitioner is found, this will be invaluable to a workup of her problem and will help substitute for the considerable time under observation it seems she cannot get.

  8. Many thanks. I'll pass that along (no pun intended). Actually, a diary is something I've been suggesting for the past few weeks but she's been hesitant to compile one since last time she tried it. Some doctors seem to think you're crazy if you keep a diary of this kind of thing and they begin to say that you're obsessed with your condition. I disagree. A diary seems sensible to aid diagnosis but that kind of response is symptomatic of the attitudes we have to combat on a sometimes weekly basis and why I get so angry about the whole situation.

  9. any updates on your sister's condition?

  10. Thanks for asking. Some progress but without going into too much detail it might well be some problem in her sympathetic chain. Seems that it can cause all manner of strange but hard to diagnose symptoms. Currently waiting for tests but, as always, these things take such a *very* long time, especially on the NHS.