Tuesday, 26 September 2017

#GuestPost & #PoliticalSpeak: How Brexit made me even more uncertain about my MS

Can we really ignore the impact that Brexit will have on the NHS? #Brexit #GuestPost #PoliticalSpeak

Summary: A perspective from someone with MS on Brexit and its potential impact on his/her life. The author is a professional journalist, who frequently visits our blog and volunteered this piece; it was not commissioned. For obvious reasons, he/she wants to remain anonymous and has penned this under his/her blog pseudonym iaino.


How Brexit made me even more uncertain about my MS

by iaino

In the far-off Pacific, in the islands of the Trobriands, there is a language called Kilivila. And that language possesses a word that struggles to be translated into English - or any other language, for that matter.

Mokita.

Mokita means a painful fact that everyone is aware of, but which – out of compassion – no one dares mention. The ability of a group to manage mokita is said to be deeply admired. Multiple sclerosis might be a case in point. People may know you have it, and the flip and the flop of your feet on pavement will testify to it, but – like Voldemort in Harry Potter – it is a thing that dare not be named.

There are, of course, words in English that, like Mokita, do not translate easily. Brexit is one of them.

Like Mokita, Brexit slips through our fingers when we truly try to interpret its meaning. Of course, on a basic level, it refers to the prospective withdrawal of the United Kingdom from the European Union. But on a deeper level, it means so much more. To some, it is a symbol of national pride, hope and of better days ahead. To others, it is a rejection of hard-fought liberal ideals, a slap in the face to multiculturalism and a green card for racism and bigotry.

But to everyone Brexit means one thing: uncertainty. Even Boris Johnson, for all his bluster, cannot know for sure what will come of it. And, to people with Multiple Sclerosis - that most uncertain of diseases - it must mean uncertainty layered upon uncertainty.

Why should this be? Well, on a very simple level, Brexit poses great uncertainties to our future health.

First, Brexit raises the issue of who will treat us after the barriers come down? Screeds have been written about how the NHS is staffed by people from across the European Union. Men and women who have travelled here to the UK, to hoist us onto MRI machines, slide needles into our trembling veins, inspect our Babinski reflexes are many. One of my favourite MS nurses is French-Algerian. My Cladribine research hero is a German. My last brain scan was undertaken by a Pole. Not only has Brexit been a slap in the face to them (ask them - yes, they took it personally), but it also raises the question: if they decide to leave our little island (and who would blame them?), who will take their place? Who, indeed?

Second, there is the issue of the pound. A weak pound does not just mean that sangrias at the pool in Ibiza have become eye-wateringly costly. A weak pound also hikes up our drug prices. The policy director of the Health Care Financial Management Association, the professional association for NHS financial staff, has told the BBC he expects there to be an impact on the NHS caused by the increasing cost of imports. "Efficiencies one way or another" are expected. And you know that when someone starts talking about efficiencies, it doesn’t bode well for a disease renowned for making people notably less-than-efficient. In the US, Ocrelizumab (Ocrevus), the first disease-modifying treatment that has been seen to have an impact on primary progressive multiple sclerosis, is tagged at a costly $65,000 per year. Will efficiencies mean that this drug will be restricted in the UK to the very few? After all, only this week tens of thousands of Parkinson's disease patients with a mixture of dementia and psychosis were denied an effective drug due to its cost.

Third, Brexit brings uncertainty to our economy as a whole. Britain’s credit rating has just been downgraded by Moody's. Nobel laureate economist Paul Krugman says there is 'zero chance' leaving the EU will make Britons better off. What impact Brexit might have on employment prospects is – yes – very uncertain. And if you are the person in the office who keeps on having to take time off for duvet days, or neurologist appointments, and all the rest, well… we won’t have the European Court of Human Rights to defend us if we are the first to be sacked.

Fourth, it brings uncertainty to scientific research, and this isn’t just because mice might go up in price. As the prestigious Royal Institution states: “the ramifications of Brexit are still unknown, but it is certain to affect jobs, funding and collaborations for decades to come.” Will funding streams dry up? Will cross-border collaborations wither on the vine? What possible cure might be lost in the maelstrom?

Finally, Brexit has fostered the shadow child of insecurity: namely, intolerance. It cannot be denied that Brexit was partly born from a fear of ‘the other’. When Nigel Farage stood in front of a poster of male migrants, supported by the tag-line ‘Breaking Point’, he used the age-old trope of ‘the other’ as the threat. The barbarians were at the gates. It’s the daily fodder for the pro-Brexit papers. Refugees are turned into migrants and migrants has turned into a dirty word. To me the issue is this: when we get into the politics of explicit bias – where ‘the other’ becomes a potent symbol for people to be distrusted and reviled, then where does that lead? Because we, people with disabilities, are ‘the other’. We are the ones that need the support of the state at exactly the same time when the state wants to demonise those who might seek support. It begins with migrants, it shifts to people of colour, then the impoverished, then the mentally ill… there is always ‘the other’. And when intolerance becomes a politically acceptable creed, those who should be most concerned are those who are least able.

So, perhaps we should strive not to apply the Kilivilian word of mokita to Brexit. Perhaps those with MS, the charities that support those with MS, the partners of people with MS, perhaps we should really begin to debate more fiercely what Brexit might mean for us. For our access to NHS staff, our access to drugs, our access to employment rights, our access to the benefits of research: all of this is now uncertain.


I do not know what this disease will do to me and I try not to worry about it, but I do worry about what Brexit could do to those with this disease. And you should too.

35 comments:

  1. What a great piece. This sums up a lot of what many of us fear for the future, regarding not only the impact of Brexit on the treatment of MS but also its effect on future research into MS and more generally.
    Thanks iaino.

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    1. Yes, absolutely. And pwms who voted leave obviously have a lesion in their prefrontal cortex.

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    2. Come on - I passionately voted remain, but I wouldn't accuse someone who disagreed with me of doing so because of their MS or any other disability. That's abusive, vulgar and predjudiced.

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  2. The people spoke and more people voted Leave than Remain. As we live in a democracy we need to accept the result and move on. The UK existed before we joined the EU and we will thrive after we leave. Don't fear change. Focus on getting the best treatment for your MS now. Do you expect the decision of the people to be overturned? I have MS and voted leave for various reasons. A key reason was uncontrolled immigration which has put huge pressure on housing, health and education. Sucking in doctors and nurses from other EU countries also raises moral questions about the healthcare in the countries they left. The future (after some bumps in the road) may be brighter than you fear.

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    1. Why should not a decision made for a variety of reasons, many spurious, be able to be overturned when it is not only apparent that it will have a negative impact on the country but demographically the mood of the country may well change. For many who chose to leave, they are in favour of democracy (referendums in fact are anything but) when it suits them.

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    2. Re: "As we live in a democracy..."

      Precisely. A democracy should allow the people to change their minds. I am all for second referendum after a deal, or no deal, has been negotiated with the EU.

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    3. Thank you for your comment anonymous. Of course, I appreciate that there was a referendum. My argument is not one of usurpation against that will, my argument is that those with the most to lose (and having a progressive, neurological condition places us in that group) are exquisitely vulnerable to the insecurities that Brexit will create.

      Leaving aside the decision on whether we voted for or against Brexit, the issue is that the thing that we, as patients, need most is reassurance that things will be better for those with MS after Brexit, not worse.

      You say there will be bumps in the road - enough to knock someone out of their wheelchair? As for the morality of labour immigration, I hear you - but it doesn't raise the question of who will replace those who may leave. A few days ago I spoke to a neurologist in London who had handed in their resignation in April. The post remains unfilled.

      What I think we should demand are political assurances, financial guarantees, moral leadership and - above all - truths. I am sure many people with MS found the £350 million figure attractive enough to vote to leave. But now we have a situation where that figure is denied or obfuscated. My article does not call for an end to democractic process, my article calls for certainties. I see none.


      Peace.

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    4. Re: "As we live in a democracy..."

      Precisely. A democracy should allow the people to change their minds. I am all for second referendum after a deal, or no deal, has been negotiated with the EU.

      I love your approach to democracy i.e. if the result doesn't go your way have more referenda until you get the result you want! I hope you don't use the same approach to running MS drug trials!

      Brexit is going to happen despite attempts to undermine the majority who voted to leave. The "we know better that you", "you didn't really understand what you were voting for" brigade bring shame on our democratic process. What do you want to see for future general election? Those without a university degree not permitted to vote? Votes of Professors have twice the weighting of white van drivers?

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    5. That is let's not forget a slim majority to leave. A braver PM than Cameron, who let's not forget called the referendum to assuage his more swivel-eyed back-benchers and hoover up some UKIP votes at the 2015 election, should have stipulated there should be a clear majority of at least 10% for Brexit to be binding. He was of course too much of a political coward to do that. It was apparent from all opinion polls that this matter was way down the list of most people's priorities. That said, the damage has been done and at the very least a second referendum needs to be called on the terms negotiated (if in fact such a deal materialises, the omens ain't great so far)and one option on the ballot paper should be to cancel the whole sorry process. As it is, so far, all this has achieved is to bitterly divide the country and "taken back control" of inexorable economic decline.

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    6. Actually since reading 'Adults in the Room' by Yanis Varoufakis I have a lot of sympathy with Brexiteers position on the EU not being a democracy, but a technocracy. The way the EU has treated Greece is atrocious and does not augur well for the Brexit negotiators. I suspect the UK is going to get very little if anything from the EU. It is not in the EU's interests to give the EU a good deal. Why should they when they are trying to protect their own interests?

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    7. Maybe from now on all MS treatment for the rest of your life should be based on one assessment made at the start, because the Consultant spoke and a choice was made.

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    8. "A key reason was uncontrolled immigration which has put huge pressure on housing, health and education".

      But lets not forget that this is a product of UK governments actions and their desire for a cheap labor force to grease the economy.

      Let's also not forget that there were and are mechanisms to remove people and other barriers, enacted by other countries within the EU, that were not discussed at the time......why not

      Yet our politicians kept this a moot point and this immigrant argument was not effectively countered, because both sides were part of the cause.

      The whole campaign on both sides was a sorry dogs breakfast and Corbyn needs to take culpability for a disunited remain front as for Cameron and Johnson, what a pair of plonkers.

      However, sad to say I am not holding my breathe for a satisfactory solution any time soon, we only have to look at EU and Switzerland to see the level of flexibility to expect.....Will we belly up like the Swiss did?...The button in pressed and the clock is ticking down.

      However what of the NHS..they are already bringing more and more nurses from the Philippines and if they paid more they would retain more UK trained nurses.

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    9. The real Greek tragedy was Greeks paid little tax and they had a huge civil service (many civil servants had two jobs and many got a retirement package at 50 with a pension the equivalent of their salary). Other EU contributors had to bail Greece out.

      A Secretary General of the UN was once asked how many staff worked at the UN and replied "about half of them". I feel the same applies to Team G. Too much time worrying about other things rather than getting on with research (what you are paid to do).

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    10. "I feel the same applies to Team G. Too much time worrying about other things rather than getting on with research (what you are paid to do)."
      We can multi-task, you know ;-) and a glance at our publication record indicates your feeling is fallacious.

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    11. "I have MS and voted leave". You idiot . You clearly don't appreciate the depth and breadth of scientific collaboration and research between UK and Europe.

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    12. "A key reason was uncontrolled immigration which has put huge pressure on housing, health and education".

      ... No it wasn't. The key reason was the underfunding of these by the UK gvt in the first place

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    13. With the Greek situation you appear to be mixing up the EU with the Euro zone. The punishment was from the Euro zone,the EU is still investing in Greek infrastructure. Note the UK is not in the Euro zone, which is why we give the banks a fortune every time we withdraw money in Europe.

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    14. Bearms, I don't think it's acceptable to call someone an idiot on a forum for having a different opinion. However uninformed the opinion may be.

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  3. What nonsense. I don't blame its author for wanting to remain anonymous.

    The EU sucks. It is an un-reformable, undemocratic mafia.

    Let me tell you where the EU is right now: Greece has cut its total health GDP by 34% due to the fact that it's being inscrutably economically punished for defaulting on a debt it can't pay back; youth unemployment in Spain is at 27%, Hungary is contravening Schengen by building borders but is being overlooked; Poland is being sued by Brussels for not taking in any Muslim refuges.

    Nothing about the EU works. This post is anecdotal rubbish, bruh.

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    1. Oh my days!!! Dre is back!

      Missed your bluntness. Much needed, man. Where have you been?

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    2. What does any of what you said, Dre, have to do with EU and MS? Yes, this journalist has presented a very weak argument about Brexit (I am a remainer, too), but at least they talk about MS.

      You remain such a rebel, but good to see you back.

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    3. I didn't want to stuff it with facts, as that just is hard to read. So, some facts that you might want to read if you don't agree with my argument. Let the light of others illuminate.

      So, if you want facts... here are facts....

      Almost 10,000 EU health workers have quit NHS since Brexit vote
      https://www.theguardian.com/society/2017/sep/21/almost-10000-eu-health-workers-have-quit-the-nhs-since-brexit-vote

      Number of EU nurses coming to UK falls 90 per cent since Brexit vote
      http://www.telegraph.co.uk/science/2017/01/25/number-eu-nurses-coming-uk-falls-90-per-cent-since-brexit-vote/

      The pound has fallen 9.5% since 23 June 2016
      https://www.theguardian.com/business/2017/sep/26/how-has-brexit-vote-affected-uk-economy-september-verdict

      70% of employers have received concerns from staff about job security or right to work in the UK following the vote to leave the EU.
      https://www.cipd.co.uk/about/media/press/200716-brexit-pulse-survey

      Workers choose job security over pay amid Brexit worries
      https://www.thetimes.co.uk/article/workers-choose-job-security-over-pay-amid-brexit-worries-t6zrhxt7c

      NHS 'could go under' if EU staff are not assured job security post-Brexit
      http://www.independent.co.uk/news/health/nhs-could-go-under-brexit-without-staff-assurances-nurses-midwifery-council-royal-college-nursing-a7879056.html


      Etc etc.

      But, rather than me presenting an argument supported by truths - why doesn't someone with MS write to Prof G and ask if they can pen a response? And show - with the same sort of facts that I present above - why Brexit is going to be great for people with MS.

      If you can prove it to me, then I will both be very happy and will aknowledge so.

      I am not talking about usurping the will of the people. I am talking about how MS and Brexit equals insecurity.

      The doctors and neuros and nurses I have spoken to all seem to be in agreement.

      It is easy to fling s+++t, Dr Dre, but to fling it without even offering a coherent response is, frankly, boring. And I get the impression that you would hate to be seen as boring.

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    4. Dear iaino, I don't think you know what you're arguing.

      The UK's decision to leave the EU is a rad choice, bredrin. It gives us sovereignty, blud, just like mamma used to make it. We're gonna be flyin', kid. Just you wait and see.

      Look, the pound is an over-valued currency as it is. It needs some rockin'n'rollin. It'll be good for us.

      And Greece, a paragon of EU efficiency, has the most shafted MSers. Big Pharma says its credit line is exhausted therefore patients are dying and relapsing. The EU couldn't give a hoot. Mandem wants to get paid, homie. Things are getting way bad. We're best off fleeing.

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    5. Yup, I'm bored. Pass the Modafinil.

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  4. i feel for all of you brexit opposers, i really do (i find it sad)... but it's a bit like a trump thing and ya know, ya brits have never really embraced the eu... you kept the pound, you kept half your independence... briton pollies, it seemed, wanted to have the pie and eat it too....

    i was relieved when france voted against what's her name, for the time being at least, putting aside another exit and an eu crumble.

    the war in the former yugoslavia started with slovenia (who felt wronged by cos it supported the less prosperous states and territories) wanting to disengage itself from the rest of the country.

    my point... i know it's difficult but surely more energy should be put into trying to work out solutions instead of crying over spilt milk.

    if i remember it correctly (and no offence meant) eu didn't really want you back... so if you want back in the eu it seems revolution is the way to go.... but the problem could possibly be islamophobia and racism: do majority of brits really want to be part of EU, the botched campaign and all? pity for all the brits i've known throughout my international skiing days were peace loving progerssives... good luck, do wish you and all the brits with ms all the best in this strange world we live in. steven pinker reckons we are living in our most peaceful times... he may be right currently, but wonder if that will change during his lifetime.

    lol - for identification purposes

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  5. Firstly if we need foreign people to work in the UK, we will issue work visas that part is simple. No need for drama.

    The EU deal is bad for the UK and there is no good time to leave. Ripping off the bandaid is the right thing to do. The NHS is open to all within the EU without reciprocity! My Father rents a house to an Eastern European gentleman that runs a pregnancy and delivery business for women from his home country. My sister had to wait for her 1 year old's check up because a translator had arrived and the foreign patient went first because the translator was being paid by the NHS!

    When I lived in London I worked with many Europeans that didn't speak great English (their English would be A2 or B1 level). But we worked as a team and delivered the software. What do you think happened when I tried to get a job in France with my B2 (that's higher btw) level French? No job, you don't speak French. Oh and you need to buy health insurance too.

    You split people into them and us, very natural human response. What is wrong with 'us' that we must defer to 'them'? Do 'us' have no rights? Must 'us' give of ourselves until we are overwhelmed?

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  6. if this was medium would it have been so much fun, I'ld be clapping so much I'ld need a dose of penicillin by now:-0

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    1. I wish I could clap. You need to get a techie to code a clap-o-meter for the blog.

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  7. I just can't fathom why anyone who has a serious illness would vote to leave. Everything from the European Medical Council, to research grants and expertise is utterly reliant and benefits from the EU. It's just incomprehensible.

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    1. I didn't vote to leave but I can see things from both sides.

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  8. There just wasn't a mandate - if only 3 people had bothered to turn and vote, would we still abide by the outcome because a majority voted for an outcome?

    The UK electorate for the referendum was 46,501,241 and the number of voters who voted to leave was 17,410,742 - that's just under 37.5% of the electorate - not the turnout, the whole electorate - it's just NOT a mandate for such a major change when over 60% of those eligible didn't vote for it.

    I really do think the brexiteers are protesting too much - are you scared that a second referendum will overturn the result? If you're so convinced you'll win again, why aren't you just egging the government to bring it on, as you have nothing to fear...

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  9. It's all so disturbing that my only option is to switch off news - otherwise I can feel MS symptoms turning on like a tap. Of course I'll vote for a second referendum if I get the chance, but in the meantime I'm in denial - as are ALL my non-MS friends. Brexit was presented as the solution to immigration and was also (in my opinion) a reaction to the sillier elements of multiculturalism and political correctness e.g. National Trust volunteers compelled to wear Pride badges, no 'Easter' in egg races. All good fodder for the Daily Mail, of course and conflated into the Leave argument for 'taking back our country'. I feel strongly about issues like this too, but leaving the EU is certainly not about to address them!

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    1. You're so right - we all know the EU is a deeply flawed institution - and that there are stupid elements of multiculturalism that annoy all of us (anyone else remember "baa, baa green sheep", or was that just aphocryphal?) - but it's like getting a divorce - no marriage is perfect, but most of us just acknowledge that the benefits far outweigh the downsides, and that to get the good, we have to either put up with the bad, or attempt to reform our partners, knowing that it might not be successful - but we can try to mitigate their worst excesses at least.

      And I'm sure some people walk out of their costy, painful divorce wondering what about the status quo was so very bad that it was all worthwhile.

      I hadn't noticed that the Uk was so perfect it couldn't do without some reformation, but I'm not declarng UDI!

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