If you are of a squeamish disposition, best you push off now. Come back another day. Not all of us can live in a fluffy dream with a happy ending, some are chosen to face reality.
I have been delving into aspects of the NHS that I had never researched before – frankly it never crossed my mind that these situations existed to be researched.
I was born on the same day as the NHS, it is all I have known for my entire life until I came to France. Living in France, contracting a rare cancer in almost unique circumstances, did open my eyes a little, that perhaps the NHS was not quite the ‘envy of the world’ that the British public are regularly told it is. I have had phenomenal treatment and care in France, and yes, I am now thoroughly biased in that I firmly believe I would have been pushing up the daisies two and a half years ago had I still been in the UK.
As it is, yesterday my calendar told me I had had an extra 1,000 days precisely to enjoy, to write, to annoy, and to spend with Mr G. The cancer has spread in that time, but not to my fingers nor my brain and I have learnt to be grateful for what I have, not to dwell on what I don’t have; to enjoy what I can do, not mourn what I can’t. It is standard advice, printed poetically on many a souvenir plate at the sea-side, but I was as guilty as anyone of not taking it to heart until I was forced to.
If you heard me rabbiting away in French these days, you might imagine I was fluent – and I am on a social level, or ‘pre-prepared’ level. By ‘pre-prepared’ I mean if I am going to the tax office, I rehearse and refresh my mind of all the tax type words I might need to say. Put me under stress, or veer into an unexpected sector of the dictionaire and we might as well be be trying to communicate in Polish. The same thing happens in reverse to those few Doctors who lay claim to speaking English. They can say things like ‘what seems to be the problem’, or ‘how are you today’, ‘where does it hurt’ or ‘what happens if you bend over’ – but then either don’t understand your answer or struggle to find words to answer your question. The end result is that very few questions ever get asked or answered.
Which is how I came to wake up one day to find that that my surgeon had very unexpectedly, and quite literally, ‘ripped me a new ar*ehole’ -in a most inconvenient spot. (I did warn you to turn away today if you prefer to live in fluffy land). I had been happily under the impression that they were just going to take away yet another tumour. I said ‘inconvenient’ because I was about to learn that the world was designed around those who crap out of their backsides, whereas for the foreseeable future, Ms Raccoon was doomed to merely talk out of hers. She has been amusing herself the past few months perfecting the art of talking out of all three simultaneously – yes, I do have three, and yes, I can do synchronised rubbish spiel! To an olympic standard, as you have probably noticed.
That then, is the background for how I came to be exploring previously unnoticed areas of the NHS. I wanted to come to England for a week. A simple enough wish you might think – the NHS, envy of the world; a British passport holder, the problems with the NHS we are told (certainly by UKIP), is the number of ‘foreigners’ availing themselves of this magnificent pillar of British life, what could go wrong?
My first port of call was to try to join an English helpline for the particular rare sub division of an already rare genre of cancer that I have. I felt sure that they would hold all the information I would need to make a mere seven days in England as trouble free as possible. They wouldn’t let me join – ‘it would confuse their other members’ they said. How very odd! What could be confusing about an English woman asking inane questions about where to get hold of essential surgical supplies in the event of say, Ryanair sending my suitcase to Sebastopol or somewhere equally salubrious. You will learn the answer to that one. Patience.
A few weeks later, they wrote to me again; by ‘odd coincidence’ they had been contacted by another English woman living in France, with the same cancer – would we like to be in touch? As it happens, I was aware that there was another, obviously female, person who had managed to contract this cancer of the womb despite not having a womb (I lost mine in a surgical mix-up some 40 years ago, enough said); the global sarcoma world is small, that of leiomyosarcoma even smaller, and that of leiomyosarcoma of a non-existent organ positively microscopic. She could have been anywhere in the world, of any nationality; that she turned out to be British, living in France and less than a 100 miles away from me, nothing short of miraculous. There was one important difference between us – schooled in France, she spoke utterly fluent French.
Thus she had been asking questions and demanding answers from day one. She had researched information in French from all over the world. It sent me into a spiral of self-doubt. Had I been too complacent? I had done what is intuitive to anyone brought up in the UK under the NHS which is basically been grateful that you have got an appointment to see a consultant, not doubted for one moment that he knew best, not tried to second guess his decisions (partly through language difficulties, admittedly) and turned up and accepted whatever he did to me. I did all that despite having every reason (see earlier regarding surgical mistakes putting me in this position in the first place) to mistrust every last Doctor and double check everything they planned to do. I did it because I was British, because that is what the NHS demands of us; and because we don’t know, are not allowed to know, that there is any alternative. It is against the law, a criminal offence, to advise us otherwise. Did you know that?
Within days of being told that her sarcoma had returned, she had discovered that there was a surgeon in Germany who had the world’s best record for treating sarcoma that had travelled to the lungs (mine hasn’t, fortunately) with minimal invasive surgery, raised the 14,000 it was going to cost via her Facebook page; she was off to see an alternative therapist in Northern France the following day who specialised in a complementary dietary treatment of sarcoma and was off to Germany the day after. She had told the French Doctors that they would have to hold off with the chemotherapy until it suited her to return, and then she would require treatment at the same hospital as me, since I had vouched for it so comprehensively. They agreed, naturally, she is the patient. No nonsense about signing forms to ‘discharge yourself’ and thus being prevented from having future treatment…I was fair gob smacked, it would never have occurred to me to be so, well, demanding. Not very British is it? Life saving though…3 weeks later she is doing well, enjoying a holiday in England, and will be returning for her chemo on a date that suits her.
Meanwhile, I had gone to England. Now, sorry to give you the gory details, but they matter. Travelling with your ar*e in front of you instead of boringly behind you takes some organisation. You meed a bag full of mini-field hospital such as you would cart about with a new baby – you have to be self sufficient. You need a suitcase in the hold, if for no other reason than that you must carry with you a specially curved pair of scissors to cut a fresh hole in the base plate of your equipment depending on how your stoma is feeling that day. Needless to say, you can’t have a pair of scissors, even a special pair, in the cabin with you, so that’ll be an extra £50 please. You need to carry your own water supply with you because the idiots who design public toilets put the sinks in an ante room, so you need your own. Not that you can carry your own through security, because you can’t have more than 50ml of liquid with you. Then again, you need to change the equipment just before you go through security because otherwise you could very well have more than 50ml of liquid ‘concealed about your body’ in a secret pouch, whoa!
So, pay Ryanair 3€ for another bottle of water exactly like the one you just threw away 10′ before – but hey! you’re British. But you can’t afford to put all your equipment in the hold in case Ryanair manage to lose your case. You can’t afford to lose your case because no, you can’t just buy extra equipment in England, because although it is English, you need permission in the form of a prescription to buy it, and to get a prescription you need to get to England first and register with a Doctor, which you can’t do unless you can get on that plane. Hospitals don’t carry the equipment because it would be an unnecessary strain on the NHS…they have translators in case you speak Kurdistani, but no, it would be an unnecessary expense to carry a spare set of essential equipment for some of the 100,000 people in the UK for whom a toilet is an impossibly designed piece of equipment that is of no conceivable use to them when they need to perform that most basic of tasks for the rest of you. Every couple of hours, since you asked.
Thus it was that I found myself lying on the floor of the toilet cubicle in an expensive restaurant in Norwich. You need to lie flat. With your legs half way up the wall, since there is no room to do anything else. Oh, and your head wedged down the side of the toilet pan, nowhere else for it to go. Scrabbling in my mini-field hospital for my own water supply since the idiotic architects had decided that the only possible use anybody could have for a sink was out in the main ‘powder room’ as something to lean over whilst you touched up your lipstick…I walked back to the table five minutes later to be greeted by a chorus of ‘say cheese’ because people wanted to take photographs – I have never felt less like having my photograph taken. But we’re British, we don’t bother people with our troubles, we smile and we don’t complain, and that made me reflect on why that is – and the surprising answer is that it is partly the idiotic ideology of the hypocritical NHS.
I had to let go of all sense of dignity that day, and every few hours of every other day I was in England, because I wasn’t entitled to use the ‘disabled toilet’. In order to do so, you either need a special key, or a card proving your entitlement to do so. You get the card or the key by applying through your Doctor to the NHS enclosing proof that you are fully entitled to receive National Health Services. People were up in arms at the hoax suggestion that Ryanair was considering charging for use of the toilet, yet the NHS considers it perfectly reasonable to completely bar you from suitable toilets unless you can prove that you are entitled to the full range of NH Services, which as a British citizen living abroad you can’t…yes, that is the same NHS which recoils in horror at the idea of enquiring of the man in bed B4 whether he is actually entitled to the several thousand pounds of medical treatment he has just flown in to avail himself of. ‘We’re not immigration agents’ they say. Yes, they are, but not where the media might get hold of the story….
I had to cart round a field hospital with me because the NHS isn’t ‘free at the point of delivery’ for thousands of people with a temporary stoma such as mine – that’s why they don’t have supplies in hospitals, it’s not to do with prescriptions, it’s because they come from a private company – and the NHS only pays for those who have cancer or a permanent stoma. These people are hopelessly over prescribed. For everybody else they say that paying for a £104 a year pre-payment prescription may save you money. These are people who have no choice in the matter – a Doctor has ordained that this should happen to them, they have complied, and now they have to pay a minimum of £104 a year – just to go to the toilet, something the rest of you take for granted, probably never even think about. Probably wish I hadn’t forced you to think about now. ‘Free at the point of delivery’ is only true in the bits the media get to talk about…
So to return to my new friend who whizzed round the world availing herself of the best of everything. As it happens, I have no complaints regarding my treatment in France, they have been fantastic, but I still had a nagging thought in my head. What was it about being British that it had never occurred to me to do the same sort of research – research is what I do all day! It is because of a piece of legislation I had never heard of. The Cancer Act 1939.
Nine years before the NHS came into being, the government lent money to the National Radium Trust to finance a new initiative – radiotherapy – that promised hope for those suffering from cancer. This being back in the days when the government felt it had to guard against losing money on such investments (those were the days, eh?) they promptly passed an act making it illegal to:
4 (1) a) containing an offer to treat any person for cancer, or to prescribe any remedy therefor, or to give any advice in connection with the treatment thereof; or
(b) referring to any article, or articles of any description, in terms which are calculated to lead to the use of that article, or articles of that description, in the treatment of cancer.
The expression “advertisement” includes any “notice, circular, label, wrapper or other document, and any announcement made orally or by any means of producing or transmitting sounds”.
That Act is still in force. The National Radium Trust was absorbed by the NHS. Which effectively means that you cannot advertise or in any way refer to any alternative other than dutifully handing yourself over to the NHS for treatment.
Over the years I had seen the odd, what I assumed was charlatan, prosecuted for offering some herbal cure, there was another one today and took it for granted that we were being protected from quacks. It is only on closer examination that you realise that these differing cures are not being evaluated and found lacking – the offence is committed by merely advertising that you may be able to offer an alternative to the NHS.
Publication of such advertisements is permitted to a very restrictive group comprising members of either House of Parliament, local authority, governing bodies of voluntary hospitals, registered or training to become registered medical practitioners, nurses or pharmacists, and persons involved in the sale or supply of surgical appliances. A very tight grip, therefore, is exercised on information that is fed to citizens of Great Britain; interestingly, the Act does not apply to Northern Ireland.
The law equally applies to private hospitals, even though they may use NHS facilities, such as the Christie Clinic. they aren’t allowed to tell you what they might be able to do for you either. A couple of years ago another enterprising blogger wrote to them and enquired how they managed to avoid getting prosecuted. This was their reply:
We consider that The Christie Clinic’s website merely states the existence of a joint partnership to deliver a specialist cancer clinic for private patients and provide information regarding the services available at The Christie Clinic. The information available on the website is not considered by us to strictly fall within section 4 of the Cancer Act 1939 as no specific treatments are promoted on the website, rather the clinic decides the appropriate treatment for each patient on an individual basis following in depth clinical considerations and in accordance with appropriate guidance and regulations.
So Christie’s have managed to neatly sidestep falling foul of the act – but it would account for the fact that you don’t find information on British web sites concerning other hospitals, such as those in Poland which have a remarkably impressive track record, with conventional medicine, we are not talking alternative treatments here. It seems the NHS would rather you died waiting than become aware that the NHS are not the only people who can successfully treat you for cancer.
No wonder I never looked around to see what else might be available, or more suitable, or even quicker – I had grown up in a country where such research is criminally prohibited.
But where the NHS thinks that using aborted babies to fuel its central heating system is perfectly reasonable.
Evil empire? Tomorrow I might tackle Russia….