Posted on Twitter by Jo Walton:
I apologise in advance in case my language in the following post offends anyone’s sensibilities, but I am not going to apologise for the content.
I am experiencing more and more self-satisfied, inaccurate and self-congratulatory posts expressing outrageous joy at the prospect, for this country and its population, of a NO DEAL BREXIT.
I would like those who think it is a good idea to read what follows and take in the implications.
As many of you are aware, our daughter, Sarah, is terminally ill with a degenerative neurological illness caused by a rare complication of measles infection.
She is not going to get better and for the last 15 years the prime role of myself and Mark, her dad, has been to make her passage through what is left of her life as pain free and comfortable as possible.
In addition to the care we give we rely upon a complex combination of meds which deal with and prevent symptoms whilst maintaining her bodily functions. In addition we have a complex nutritional regime which involves baby products and medical food products.
We also need to ensure that her skin remains intact – not an easy task when the person is double incontinent but involves quality prescription emollients and continence products to ensure that her skin does not break down and leave her open to infection.
Infections anywhere in her body can lead to pneumonia which is an extremely unpleasant death being gradually drowned in their own lung fluid.
I undertook a little, although not exhaustive, exercise last night with Sarah’s prescription items and nutritional items. Of the 20 medications which she receives on a daily basis, most of them more than once a day, 11 of them are made in countries in the EU.
Of the 9 remaining, although manufactured in the UK, I have no way of knowing how many of those ingredients are obtained from supply chains in the EU.
We are regularly experiencing issues with some of her medication where the pharmacy is desperately trying to source preparations from elsewhere because of manufacturing problems because the manufacturer has not been able to access one or more of their required ingredients.
We cannot stockpile our medications because Sarah uses what the prescription amount states and the surgery will not issues prescriptions early. This is indeed only fair – if we stockpile someone else will experience a shortage.
Doing without some of Sarah’s meds for a few hours will have a profound effect on her well-being – being without them for days or weeks could cause irreversible issues and will certainly leave her in extreme discomfort if not real pain.
The specialist baby milk which Sarah uses is made in the ROI, one of her nutritionally balanced prescription foods is made in Germany and the other in the ROI.
The medical protein powder which is integral to her diet is made in Germany, the yoghurt, which has become indispensable to her gut health is made in Greece.
The skin around her bottom is particularly vulnerable to break down and we have achieved this by identifying the best possible product for Sarah’s shape and size – her pads are made in France.
The Cover dries which absorb any leakage to prevent her skin becoming wet are manufactured in Sweden and the little soft fabric pads we use to protect some more vulnerable areas are made in Sweden.
Sarah is not alone in her needs – there are thousands of sick and vulnerable people across this country which are reliant on the supply of complex medication and medical products from the EU and disruption will make their lives intolerable and, in some cases, unsustainable.
Hands up – I voted remain, I am aware that the EU is far from a perfect institution but on balance I felt that the pluses outweighed the minuses. I get it – some of you did the maths and came up with a different answer.
We had a vote, the Leavers won; I am a democrat so I respect that outcome. What you didn’t get as a result of that vote though is the freedom to place thousands of sick and vulnerable people at risk in this country by flag-waving us into a No Deal departure.
This is not a playground spat nor is it a game of soldiers on the kitchen table, this is real people’s lives you are so gleefully playing with up and down this country. Open your minds and see beyond the idiocy.
Don’t get me wrong, I do not have any time for those who wish to overthrow democracy and our constitution and impose the opposite will upon the country, from that which was voted for, without due process.
That in turn will cause its own disruption and the rise of forces none of us should wish to see again.
If having read this you still feel the same about the need to send us over the edge of a cliff then you are not a friend of mine, Mark’s or Sarah and I would ask that you unfollow me. I cannot be friends with anyone who wishes harm on my daughter.
For the rest of you please share this as much as you possibly can, pack it off to your MPs and ask them to think about how their behaviour on all sides is affecting those who cannot fight for themselves.
I cannot watch her endure any more pain and I don’t think I will ever forgive any who make her life more intolerable than it already is.
END
hilary772013 said:
Reblogged this on hilary77blog and commented:
Every Brexiteer needs to read this, it’s heartbreaking
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mohandeer said:
I don’t honesty believe that the many NO Deal Brexiteers can be reasoned with on any front and the plight of Sarah will be no exception. It’s a monstrous situation for her and her parents. Between 15 – 17% of the people who voted Brexit did so in the belief that certain promises made by the Brexit (six main ones) would be honoured. This means that the referendum result would have been a minimum of 58% of voters voting to remain had they known that those promises would be worthless lies. I believe in democracy which is why I refused to side with those wanting a second referendum, but all that changed when the result was garnered by false representation. Now it is obvious that a second referendum would overturn the Brexit result which makes the original referendum result a travesty of justice and a devolvement of democracy. Any pro Brexiteers are lying to themselves and the rest of the country who voted to remain or would have had they known the truth of those empty promises if they still maintain that the referendum was an accurate representation of the peoples will. People like Farage have no conscience or respect for democracy as is the case for the mindless imposition of that now unfair result to leave the EU by the almost thuggish Brexiteer hardliners.
I fervently hope that those who steadfastly reject the will of the now apparent majority will suffer the consequences as Sarah and her parents will have to endure and I will be happy to lay the blame of those consequences on their doorstep and rejoice in their mewlings of despair, regardless of my own difficulties.
Much as I despise the corruption within the EU it pales to insignificance compared to the corruption within our own parliament and that includes worthless shits like Chucky and Jo Swinson who are stepping on the faces of others to climb that greasy pole.
My heartfelt sympathies to Jo and Mark and their beautiful daughter.
Reblogged and shared.
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pauljcharles said:
Hi I wondered if you could do anything with this information.
This year I was diagnosed with Microscopic polyangiitis (MPA) the treatment is steroids and rituximab (rituxin in USA) my doctor told me without the rituximab the illness would shorten my life significantly ( within months)I have added a screen shot from a closed Facebook group for MPA of an American sufferer who has been refused the treatment by her insurance company.
I am worried that brexit/ trade deal with USA means we will move to an insurance based health care system and even if you could afford insurance ( I couldnât) there is still no guarantee of treatment.
[image1.jpeg]
Paul
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Meryl Davids said:
This is what happens when the losers spread false information, some people believe it then panic.
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brettghartmann said:
@Meryl Davids
What you are supporting is the “Dictatorship of the Majority”.
Which is OK until YOU are part of a minority and have your rights and opinions swept to one side by this Jack Boot Government.
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June said:
So nearly 2 million have signed the petition now….if we could get even half that number of people to protest in front of parliament, holding banners of those who have died because of this government, and chanting this chant. How bloody powerful would that be.
This protest needs to happen. People NEED to act NOW!
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randombloke said:
I care for a person with Lesch Nyhan syndrome, a highly destructive, life shortening, x-linked recessive disorder which affects roughly 1 in 2 million children (boys) born in Britain with a global average of 1 in 400000.
The author’s concerns are very real as we have been experiencing much of the same problems over the last several years with even the most “boring” of medications (only gets worse where oral suspension is required due to dysphagia)
In an environment where the very safety nets put in place to protect the most vulnerable in society are crumbling down around us.
People providing this level of care to a person often have the best insight into their needs, and even medically where rare disorders are concerned, are the ones the real medication professionals (doctors and consultants) will actually turn to, because they will had dedicated themselves to understanding properly the mechanics of the disorder to know best how to care for that person.
Without people like the parents of that child in the article, our care system would fall flat on its face several times over.
It is close minded, ignorant and outright callous to dismiss those concerns as panic irrespective of your political alignment
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randombloke said:
p.e. sorry for the grammar errors I am not typically afforded the luxury of time to be when it comes to expressing my opinion least of all politically, I just emphasise very strongly with the plight the family is facing
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Mr. Magoo said:
The people of this country need not worry about a no-deal Brexit. Too many powerful people are against this happening. It’s true the prime minister wants the UK to crash out of the EU, but he is just one man. A lot of big businesses; the Queen; and a majority of MPs are all against a no-deal Brexit. John Major has even threatened to take Boris to court over this (and I’m sure Mr. Major would win that court case because to crash out of the EU is against international law).
To the people advocating a second referendum – I ask: what would be the options on the ballot? In my opinion, Parliament should revoke Article 50, and the Tories should apologise to everyone and then make it up to us by ending austerity.
Brexit has distracted us from the insanity of capitalism; a system which has the means to provide food and medicine for every man, woman, and child on Earth – but doesn’t because that wouldn’t be profitable. Also, it is a system that puts profit before planet, which is driving us towards climate armageddon (a much more realistic threat to Sarah’s future than a no-deal Brexit).
Only socialism, a society that puts meeting people’s needs and sustainable development before making profits for a few, can save the world (in more ways than one). https://www.worldsocialism.org/spgb/pamphlet/from-capitalism-to-socialism-how-we-live-and-how-we-could-live/
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jay said:
Where will all those brexiters we have to listen to as they celebrate their ‘win’, dismiss the expert warnings as ‘project fear’ and cry ‘just get on with it’ hide when the consequences of this folly hit home? It was a bad idea to decide a complicated issue by a referendum. When elected representatives vote, how they voted is visible and recorded. They can be held to account. This doesn’t happen in a referendum. We’re seeing the effects of divorcing power from responsibility. Our family has some issues with similarity to this family, there are many people who dread Brexit, especially No Deal, with good reason. I see no hope of quickly bringing the country together, too many people will be badly hurt. It isn’t a game.
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Perry said:
Jay: I used to agree with your comment that “It was a bad idea to decide a complicated issue by a referendum”.
However, it has become manifestly clear to everybody that our elected representatives are incapable of deciding complicated issues.
Personally, I have more faith in the Great British Public. So perhaps we should actually have more referenda……
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