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.