Choke for all the NHS care

Experiences of the NHS can vary widely. Some find themselves well treated, while others have a bad time. One HOT reader with chronic health problems, who wishes to remain anonymous, sent us the following account.

I despair at what NHS mis-management is reducing skilled, dedicated practitioners to.

I have three chronic conditions, one of which, day and night, inhibits my breathing. ‘NO CURE’ is the verdict from the few practitioners across the country who know anything about the condition. One that used to be called ‘perennial rhinitis’ – is now minimised into ‘post-nasal drip.’ It isn’t serious. Just a runny nose. It could just kill you overnight, that’s all. Nothing to worry about.

The severity of the condition may differ per patient, but mine is unceasingly chronic. Symptoms vacillate between flooding mucus that fills throat and breathing passages rapidly, so rapidly you can hardly catch your breath expelling it, to mucus the consistency of set silicone, which if you are lucky doesn’t choke you in your bed (chew menthol and eucalyptus gum through the night if you can take the risk of not choking on that), and may only fill your sinuses and chest, giving you migraine headaches and coughing fits that can make you collapse and convulse in a fit, at any moment. But don’t lose sleep over it. People reading this will come up with all sorts of options that you may have already tried but they haven’t tried, as they haven’t suffered it. But be kind, they mean well.

Over seven years of a hellish struggle and at great cost, I have changed my environment, relocated to a better climate – Hastings – and through trial and error managed this last year to have a stable year of health. It entails not socialising in homes and venues where there are carpets and fabrics, remodelling your home so it is hypoallergenic with all hypoallergenic accoutrements.  Relocating 350 miles away from your relatives and friends, just for warmer temperatures and daily sea air, which can make the difference between whether you are only spitting and coughing all day, or being hospitalised in A&E on a nebuliser. Drastically altering your diet and cooking methods to exclude even some healthy fruits and vegetables that exacerbate the acid generated by the necessary medication. Obviously don’t smoke (I never did, thankfully), and that goes for anyone’s tobacco; don’t drink alcohol much and stop dairy and wheat intake completely. Take calcium to minimise the effects on your bones thinning (nothing can be done about the skin thinning).

I have managed both this and the way it affects my view on whether or not life is worth living and preventing slipping into a deep depression and no longer spending winter nights out on the street for air; I am self-managing and low-maintenance, hardly seeing my GP except for the occasional crucial fine adjustment or emergency. So, what is my current state of affairs?

Ask my GP. I did. I had to when my medication was stopped. Full stop. No advance warning. No consultation. A medication I was told by my previous GP I should never just stop but wean myself off, gradually. Simply stopped without thought for whether or not I had enough breath in me to make an appointment to contest the decision. When I could actually get anyone to answer the phone to make an appointment – dozens of attempts over three days and giving up until the following week, breaching the blockade of being considered an encumbrance. That is what you have to do now, not cooperate, contest.

Now I am told, over part of my brief consultation, there are legal reasons for stopping the medication. But there are no legal reasons preventing the NHS from making someone dependent stop breathing? I think you’ll find there aren’t. The law will back neglect by the GP if – and this is the crucial point – if you trust this professional with your health interests and do not voice your objection within the five allocated minutes.

To save time, you might produce video diary evidence of how chronic your condition may get if their preference was indulged, to save explanation that frankly will be disbelieved.  And on that evidence, you may get a prescription, like the one I got for an infection that affected me when the video was taken, three years ago. But you cannot object even to inform them when the video was taken – no time for dilly-dallying.

How can GPs be expected to listen when they have such a huge workload? I was told by a practice manager that a GP has to process 140 patient-consultations per day. If a GP works 10 solid hours without any lunch, that leaves each patient four minutes 20 seconds to be listened to. Practicing psychiatrists that I helped train in 2005/06 told me they had to assess a mental patient in crisis and diagnose what might affect them for the rest of their lives, within 20 minutes.

What kind of people make these kinds of demands? The same people, I can tell you with authority, who will spend thousands on lavish presentations, networking parties and £250-per-head conferences promoting not new practices but new published books they could have bought and read and statistics reports. Including lunch, of course. I hope they ch….

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