‘Save Our NHS’ screech the placards! Who exactly is that ‘Our’ referring to?

‘Our’ as in ‘Our’ union ridden, hidebound, monolithic organisation that can keep endless middle managers in work writing reports, attending conferences, following the politically correct line?

Or ‘Our’ as in the recipients of health care?

They surely cannot mean the latter – for no one is suggesting that people be left dying in the streets as a result of reform.

The reform that is suggested is a part-privatised service. As we have here in France.

The Unions recoil in horror – ‘patients will be little more than consumers‘ they say. ‘Live consumers’ say I.

I had a phone call late last night. It was my friend Jane. Let me tell you about Jane.

We met because we had both written – from France – to the national health service’s ‘Sarcoma help line’. We asked to join their forum, which promised plentiful advice and support. We did so because we are both english, we both have leiomyosarcoma, and we were both becoming overwhelmed by the task of deciphering from the quick fire French which treatment from the array of treatments on offer to us, we should choose.

We were both turned down. We might be British nationals, we might both have subscribed for many years to the national health service, but ‘it would be too confusing’, I quote, for us to be allowed to view the conversations on that forum concerning treatment methods.

They offered to introduce us to each other, we could be our ‘own support group’. So we have been.

Incredibly, it turns out that we are the only two people in the whole of France that have this particularly aggressive form of cancer in the specific circumstances that we ‘enjoy’. We have, so the latest statistics tell us, a 14% chance of surviving to the five year period that is graced by the term ‘cured’. 14% sounds pretty good when you compare it to the alternative of ‘not surviving’.

Personally, I like it even better than 13%, and a whole lot better than 12%.

However, our personal circumstances are very different. I am on a collision course with the proverbial ‘three score years and ten’; I have had a damn good life, done all the things I ever wanted to do, and have the endless support of Mr G for when the prospect of a foreshortened future gets me down – and it does from time to time. If you have never had the ‘palliative care’ conversation with a Doctor, you cannot begin to understand how it strikes fear into your heart; how it is endlessly repeated in your brain during the most mundane conversations – ‘I couldn’t start work on it for three months’ says the builder, and your brain goes into free fall – ‘have I got three months’ it says?

I had the ‘palliative care’ conversation last October; it came as part of a range of options, which included mind bogglingly expensive surgery and further treatment with a prognosis roughly equal to that 14% that sounded so good a couple of paragraphs before.

A ‘range of options though’. I had already had extensive surgery; already had the chemotherapy, did I want to continue the fight, or give in gracefully? My choice, my body, my life. Not my cost though; I have paid my tax dues to France – in return they delivered every treatment I needed without question.

‘Jane’ went about things very differently, for very different reasons. She is the 40 year old single Mum of a ten year old boy. She speaks perfect French, she was married to a Frenchman, and so understood these conversations very differently. It wasn’t ‘A’ or ‘B’ for her, it was ‘ignore ‘A’ and let’s get on with the best possible options for ‘B’. For her son’s sake, she had to be in that 14%, there was no ‘choice’.

She flew off to Germany, to have the surgery done by the Doctor with the best reputation in the world for ‘success’; she paid for it privately, her friends and family raised the money. So far so good. The surgery was a huge success, leaving her with some tiny ‘mets’; small embryo tumours that were beyond the reach of the German laser gun. Chemotherapy was the answer. She flew to England, as she is entitled to do, having been a contributor to the national health service for most of her working life. The Royal Marsden Hospital. Envy of the world and all that.

The main reason for having done so was that she was now weakened by surgery, and facing Chemotherapy, she needed the help of her family to care for her son. One of the worst features of leiomyosarcoma is that when it decides it is ready to cart you off, it happens in days not weeks. You can be fine on Monday, overwhelmed on Thursday. We have both seen it happen to too many people. You don’t hang around doing the things you want to do; you don’t plan long term projects. So, England, and a home counties cottage and off to the Royal Marsden she went.

You have to wait for an appointment with a consultant in England of course; but the waiting list wasn’t too bad. Letters went from a GP to a consultant, and back to Jane. Royal Mail dragged their heels. Finally she saw the consultant. They agreed to give her chemotherapy. Not the full whack that had been given to me in France; just a ‘palliative dose’ – ‘you know we can’t cure you’ said the nurse as she set up the equipment. Jeez, thanks for the encouragement!

Incredibly, even the palliative dose has had a dramatic effect. She is left with just two tiny – 1cm each – ‘mets’. Nothing like the 50cm monster the Bergonie managed to rid me of, nor its offshoots – but is the Royal Marsden elated and looking to the next stage – radiotherapy?

No. It’s ‘not policy’ apparently because she has evidence of leiomyosarcoma in two places, and thus ‘only’ palliative care is on offer. Not as part of a range of options. She’s had to wait three weeks for that decision. It takes that long to get to see the consultant again.

This is a 40 year old single parent with a young child.

Last night she rang me; she wanted to know the details of how many different places I had ‘mets’ last October, and how big they were – and what the consultant had done about it. And I’m not a young single mother.

Suffice it to say, she was on the phone to my consultant this morning. What? Wait for a GP to write a letter – don’t be silly – she phoned him directly, that’s what you do here. We’re little more than consumers, right? She explained that she was currently in England and what had occurred.

‘How soon can you get here’, he said. ‘I can get a flight on Tuesday’, she said. Naturally she now has an appointment for Wednesday morning; I’m meeting her there. I don’t know what the outcome will be – but I do know for certain that palliative care won’t be the only option on offer. Fortunately she is the Mother of a French citizen, and she has paid her dues here too. She is entitled to the best France can offer.

They don’t give up on you here. They certainly don’t give up on young mothers. They don’t have ‘a policy’ on when it is worth ‘trying’ and when it isn’t.

They don’t have a committee that vets whether new treatments are cost effective or not. NICE, the anything but nice committee that does that in England has just refused to license the eighth consecutive cancer treatment they have turned down on the basis of cost.

Yet the Royal Marsden can find the money to fund a 48 page exhaustive inquiry into a third hand allegation where neither the name of the victim was known, nor the current name of the ‘second hand’ informant was known, regarding alleged abuse by Jimmy Savile. Turned out he’d never set foot in the place.

That’s political correctness for you. The British are repeatedly told that ‘The problem is that there is only so much money to go around and that therefore you have to allocate the scarce resources to the benefit of the most people possible’.

This statement then continues ‘Inevitably this will mean some treatments are declined’.

That shouldn’t mean life saving treatment – that should mean that first you limit the number of politically correct projects you undertake, like tying up a senior manager writing 48 page reports when ‘Operation Yewtree police searches have been unable to trace the potential witness referred to within the original allegation’; then you limit the number of ‘highly paid’ managers you employ; then you limit the number of non-life saving operations – like pinning back someone’s ‘traumatising’ ears from sticking out – unless they part fund it by holding an insurance policy.

No wonder they didn’t want Jane or I to have access to that forum – it would, I agree, have been too confusing to the British patients to have learnt that in the rest of Europe they don’t have a policy that a 14% chance isn’t worth taking.

Tagged as: #Cancer, Breast cancer, Leiomyosarcoma, National Health Service, NICE, Royal Marsden