Letter to my GP surgery…hello?

booking

Dear Sirs,

Not for the first time I find it necessary to make my feelings known with regard to the mechanism for obtaining an appointment at Langley Corner surgery.  I’ve heard all the platitudes before, “it works very well”, “other people like the system”, and so on.  It works well for the practice, it does not work well for the patients, their employers or, frankly, any other stakeholders such as the Urgent Treatment Centre, Accident & Emergency Department, etc.

Let me give you some specifics.  In February 2012 I was diagnosed with a NSCLC tumour on my right lung.  By a stroke of immense good luck it was only Stage II and thus, by definition, had not metastasised.  The fact is that I had been putting off visiting the surgery to check out my persistent nocturnal cough because I was too busy to have to take part in the daily gymkhana you organise each morning.  This is the event where patients/clients/taxpayers are supposed to delay or cancel their journey to work so that they can be at home, able to make a tedious series of telephone calls to the surgery, the vast majority of which are greeted with an engaged signal, in a desperate attempt to be one of the lucky ones to a) get their call answered and b) the even fewer to hold the lucky Lotto ticket to get to see a doctor that day.  Of course, having cancelled their trip to work, many then have to take another day off so they can subject themselves to your sordid game-playing all over again, the following day.  Frankly, I consider it abusive and I have no intention of subjugating myself to this despicable practice.  It was eighteen months before I could bring myself to play this silly game and if you think I’m the only one who puts it off, even when it’s potentially as serious as it was for me, you’re kidding yourselves and doing a huge disservice to the very people who pay your salaries.

You eventually commissioned a web site, one using 1990’s technology, and offered an appointment booking system there but that too has strict limitations on how one may book an appointment and we are specifically barred from making an appointment for that day or the next.

bookhere

What a complete waste of money and when, on earth, will someone commission a modern day replacement, something akin to the average two-bit restaurants?

In 2005 I recall Tony Blair being questioned in front of a Question Time audience and discovering to his amazement that one couldn’t simply pick up the telephone and book a doctor’s appointment.  More than ten years later there’s been absolutely no improvement.  There is no commercial enterprise on the planet that would still be in business one year down the line, let alone ten, if it deigned to treat its customers in such a disrespectful and condescending manner as this.  Every business or other organisation in the world manages to organise a working appointment system, I cannot conceive that it is beyond the wit of a group of clever individuals such as a medical practice to achieve the same outcome, if they only put their minds to it.  It is one of the reasons why I so despise the way in which health services are delivered within the NHS.  It’s the attitude that we are getting something for free, that doctors’ needs are paramount and that we, the clients, will just fall into line with whatever arcane process is made available to us.  Well, I pay significantly more to the NHS than I do for my own private health insurance which, as you might imagine, has risen significantly since my two recent cancer diagnoses. I’m paying expensively for your services and then I’m paying all over again so that I don’t have to use them.  I can cope with that but I refuse to be treated like some kind of beggar pleading for the very service for which I am paying through the nose.

I don’t choose to use you, you have an effectively monopoly or near monopoly, I am obliged by your trade union rules to use you.  I can even cope with that, if you would simply do me the courtesy of bearing in mind the incredible competitive advantage you have been gifted rather than abusing it and me with these ridiculous procedures.  So, let’s turn to this week.

On my file you hold several letters from the senior Dermatology Consultant, Dr. Susie Morris, whom I pay privately.  In those letters Susie Morris documents the medications she has prescribed for my psoriasis, the ones I usually purchase privately at my own expense.  Knowing that I am soon to need further supplies of Dovobet gel and knowing that my wife intended to make an appointment to see a doctor at the surgery, I asked her if she would request a prescription for this small but essential item.  I don’t care if I have to pay for it but I can’t get hold of it without a prescription.  My wife wasn’t able to get her appointment (and thus ended up at the Urgent Treatment Centre yesterday for four hours) but she did make a telephone request for my prescription which was accepted.  Yesterday I received a text asking me to call the surgery with regard to this request, which I did.  I was advised that “the doctor” had requested a face to face meeting before agreeing the prescription, despite the fact that my records show it has been prescribed by my consultant who, were there any doubt, could have been called for confirmation.  All of which would have been faster, simpler and less costly for all concerned than a text, a phone call and a doctor’s appointment……  I was told to ring the next day at 8:30, I refused.  I was told I couldn’t have an appointment until sometime in August.  I was told I couldn’t have a telephone appointment until next Tuesday.  I told the lady not to bother.

I emailed my consultant and within five minutes a prescription was winging its way to me in the post.  Sure, it cost me another twenty pounds but I’d happily pay fifty to avoid being subjected to this demeaning process of yours.  That said, I do resent it.  I pay enormous amounts of tax to support your income, I pay again for my health insurance, I pay for my own consultants’ visits and for my medications – even though I have an exemption card as a result of my cancer.  All I asked for was a wretched piece of paper and mountains had to me made out of molehills.  People wonder why the NHS is so desperately short of cash, you don’t have to look very far, do you?

I am sure you are all very lovely and well-meaning people.  I’m equally sure you will not appreciate the tone of this letter.  I’m afraid I don’t have the time or patience to waste time on frivolous pleasantries when I’m already annoyed that I should have to waste more time writing the darn thing.  Perhaps, once you’ve put your own considerations to one side you might stop and think about the nuggets of crucial information I am delivering, free of charge and recognise that there are better ways to do things, that your current ways are self-serving, disrespectful, offensive and wasteful.  I just happen to be in the minority of people that will bother/dare to tell you so but I’m also the tip of an iceberg.  A little business-like attention to such matters would improve your lives as well as ours.  There would be less time wasted in the workplace, less burdens placed on A&E and other facilities, more money in your pockets.  It’s not rocket science.

….if I get a reply I’ll update this blog….yawn….

Advertisements

X-Rays for Cancer? When a scan is a scam

X-Rays for Cancer? When a scan is a scam

So when my Oncologist tells me that my brain is “excellent”, I decide to take that as a compliment to my intelligence.  Why not, it’s not every day anyone says something quite so flattering but, of course, he wasn’t referring to my intelligence.  He was thinking of it from a purely professional perspective and his profession is that of a doctor.  As a doctor he was referring to the lack of shrinkage or other signs of age-related deterioration but it was nevertheless very comforting when he described how many of his patients’ scans appear, by comparison.  The general review was part of the reason he was feeling so positive but most of all he was focussed on the speck, for that’s all it was, that was the remnant of my three year old tumour.  The precise definition of a speck was, apparently, 0.018cc.  As I said, a speck.  A pea, for the purposes of comparison, is approximately 0.20 cc in size whereas this white fleck on the monotone picture in front of us was nearer that of a mustard seed, though not quite as uniform given that mine is made up of the jagged remains of a dead alien lifeform.  Regardless, the point is that whatever the precise size of the speck, three years down the road what we can say for certain is that the tumour is dead, gone, finished, finito and that, quite frankly, is amazing both technologically and emotionally.

I’ve got used to Connor over the years so I know that good news always comes first and the more difficult stuff is pushed further down the queue. This in spite of the fact that he was emphatically instructed on that very first day that I only take good news, so good news is all he’s allowed to deliver. For the most part he complies but on occasion he has little choice but to tell the truth. One such day was the one where he reviewed my thoracic CT scan and spent some time sharing the good news. My right lung may have said goodbye to one half of its former substance but, aside from the obvious scars of emphysema he focussed on the lack of any new lesions (tumours) and the fact that the remaining tissue had expanded fully to become the same size as the original whole lung, yay! Then his demeanour changed for the worse as he prepared to show me the second CT, the one I had asked for of my head and neck. I couldn’t say for sure why I asked for it, I think I was fearing Oesophogeal cancer, following the departure from this mortal coil of the wonderful Christopher Hitchens courtesy of that very thing. Whatever the trigger for it, it turned out to be the best call I’ve ever made in my life even though that wasn’t how it felt in that moment as Connor announced that the 21mm diameter spherical object in the centre of my skull was not supposed to be there. It was so perfectly formed and so centrally aligned that it looked as if it belonged. It didn’t. Not a brain tumour, per se but rather a lung cancer tumour in my brain, one that likely grew from a single, solitary cell that found its way into this cosy, protected womb and decided to set up home and raise a family of other little cells just as all living things are wont to do when good circumstances such as this contrive to provide a protective, nurturing environment. My worst nightmare.

A recent article from Yale University  states: “Most patients with non-small cell lung cancer (NSCLC) that has metastasized to the brain have a dire prognosis.” It goes on: “NSCLC accounts for 85% of all lung cancers, with 30%–50% of patients developing metastatic disease to the brain. Typically, patients with this diagnosis die of the disease within seven months.” So, yes, I do feel lucky but it’s a relative term, I assure you. What the article doesn’t mention is the benefit of Gamma Knife treatment to destroy these critters incredibly effectively so I’ve written to them to tell them of their oversight. The other thing this article and most medical practice overlooks is that if 30-50% of lung cancer patients develop a metastasis in the brain, why isn’t a follow-up MRI of the head a de facto part of the standard treatment plan. Oh, that’s right, it costs a little money….and I suppose that if general wisdom is that the prognosis is “dire” and the average life span just “seven months”, then why bother?

NSCLC

So, when the focus this time was all about the good news evidenced by the MRI of my brain, my natural caution had me, well, trepidacious of the prospect of reviewing my thoracic CT. I needn’t have worried. The news there was every bit as wonderful. Given that my whole body PET-CT, just six months ago, was all clear there were no rational grounds for my concern but when you’ve trodden this path a while you come to recognise that the brain, even one in excellent condition, doesn’t always obey the entirely rational when it comes to the fear created by cancer. So, three years for my brain, four years for my lungs, that’s almost a clean bill of health and, whether it is or not, that’s the way I chose to interpret it. As Connor said, nothing’s changed, Robin. You still have the same DNA, the same physiology. In short, all the same circumstances that attracted the alien in the first place and if another passing alien happens along there’s nothing to say it won’t choose to stop over and stay a while. That’s the reality. Sure, the fact that I’ve since stopped smoking must help, but the previous fifty years of inhaling carcinogens have already had their effect on my cell structures in such a way as to open them up to the possibility of mutation into alien form. My fault entirely but that doesn’t lessen the impact, believe me.

So there it is, I’m healthy from head to toe. I’m sort of happy about that, relieved. So why no euphoria? Difficult to say, everything about this whole journey is difficult to describe, emotionally. It’s literally life-changing, obviously but ever so confusing.

And while I’m getting my good news, my lovely friend and Irish earth mother/grandmother/wife of my good friend is recovering in ICU in Ireland following a full pneumonectomy. That’s a whole lung removal as opposed to my lobectomy. In some respects she’s in exactly the same boat as me. A life-long smoker, approximately the same age and with the exact same type of non-small-cell carcinoma in her right lung. The difference, mine was Stage II, hers Stage III. Hers was once Stage II of course and her experience could have been the same as mine but for the criminal failures of her consultant and GP. She presented in June 2015 having had a sequence of chest infections, one a month for several months, which had not responded to antibiotics. That’s about item #1 or #2 on the list of top ten symptoms of lung cancer. So, what does the consultant do? He orders an xray. Now, for those who aren’t familiar with all this medical technicality, here’s the thing. Some tumours show on an xray, many don’t. So if, like me, it shows then you’re sure of the diagnosis and you get on with it. If you’re like my friend and nothing shows on the xray there is only one thing you can deduce and that is that you know no more following the xray than you did before and so you need a CT scan. But there is always the other option, I suppose. You could be a dumb, lazy, negligent twit who’s in the wrong job and you could just deduce that because my friend was a smoker and you have no evidence of cancer then, well, it must be emphysema, right?  (COPD as it’s now defined). No need to rush now, just advise the patient to give up smoking and Bob’s your uncle. Or, as is much more likely, your Stage II/III tumour turns into Stage III/IV as it did for my friend. I told Connor about it. He shook his head and gritted his teeth. He sees it at least once, often twice a week, every week. A patient presents with clear symptoms that could indicate lung cancer and off they go for the xray. That’s fine as a cost saving exercise if you assume that 60% of cancers will show up on the xray thus saving the cost of a CT but against that has to be set the additional cost of sending every one who has a clear xray for a secondary scan by CT in order to rule out the inability of xrays to show many tumours. These people have to get with the programme and if someone is presenting with symptoms then get them to a CT straight away. That way there’s no guesswork, there’s no ifs, buts or maybes. Whatever you do, you don’t let your own prejudices get in the way of your diagnosis and, if the xray is clear then, AS A MATTER OF ROUTINE, you go for a CT without hesitation. Why does it matter? It’s simple really. My Stage II tumour, precisely because it was Stage II, was a nicely behaved alien keeping itself to itself and once removed by the lobectomy left me with no need for chemotherapy given there was no metastasis and the tumour had not spread to the lymph system. Give it a further six months to gestate and you get yourself a Stage III tumour which might well metastasise, though my friend’s hasn’t, or it’ll grow until it takes in a lymph node, as hers has. Now you need chemotherapy, for sure, and the chances of a full all clear are greatly reduced – not entirely, she has a very good chance with the chemo of making a full recovery but if she does, it’ll be no thanks to her negligent doctors. Six months after that xray, my friend starts coughing blood. That’s the Stage III, right there and it should never have happened, damn them.

So there I am digesting the complicated and confusing news that I might just live forever, or thereabouts, whilst worrying about my friend who has a terrifying ride ahead of her with no guarantee as to outcome. A bit like survivor guilt, I guess. I just want her and everyone else to have the quality of care and the luck that I’ve had. You can’t distribute luck fairly but you can damn well make sure that everyone gets the same quality of care. Unfortunately the Irish health service is not even as good as the British NHS, and that’s bad enough in this respect, but there’s is some years behind that and, consequently, patients will pay with their lives. If one person reads this, patient or doctor and acts accordingly, I’ll have lived my extra years for good reason.