great ormond

The Immortal Copyright

In 1929 James Barrie donated all his revenues from Peter Pan to the Great Ormond Street Hospital for Children in London. After Barrie died in 1937, the copyright became a major source of revenue for the hospital. Normally in the United Kingdom a copyright lasts until 50 years after the author’s death, so Peter Pan entered the public domain at the end of 1987. But in 1988 the Labour government had added a special amendment to the law governing intellectual property:

The provisions of Schedule 6 have effect for conferring on trustees for the benefit of the Hospital for Sick Children, Great Ormond Street, London, a right to a royalty in respect of the public performance, commercial publication, broadcasting or inclusion in a cable programme service of the play ‘Peter Pan’ by Sir James Matthew Barrie, or of any adaptation of that work, notwithstanding that copyright in the work expired on 31 December 1987.

So the boy who never grows up has a copyright that will never grow old – according to UK law, the Great Ormond Street Hospital for Sick Children has a copyright which extends perpetually from 1988 onwards.

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February 14th 1852: Great Ormond Street hospital founded

On this day in 1852, the Great Ormond Street Hopsital for Sick Children opened in London. In the mid-nineteenth century, despite high child mortality rates, there was little professional medical help available for children, with many parents opting to care for their children themselves. Dr. Charles West identified this problem, and drew attention to childhood diseases in a series of lectures. It was Dr. West who fought for the opening of Great Ormond Street, the first hospital of its kind in the UK. When the hospital first opened its doors, it had only ten beds, and was led by the matron Frances Willey. Great Ormond Street struggled financially in its first years, but in 1858 it was saved when famed author Charles Dickens gave a public reading of A Christmas Carol to raise money for the hospital. With Dickens’s money, the hospital could expand and increase its bed capacity to 75. In the years that followed, Great Ormond Street further expanded and attracted notable patrons who wanted to support its work. Most famously, in 1929 the author J.M. Barrie donated the copyright to his creation Peter Pan to the hospital, which has provided the hospital with a steady income. Great Ormond Street is a British institution, and continues to have a worldwide reputation for patient care.

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We’ve seen those pictures of you when you visit hospitals, you visit schools, and that must be  an amazing gift to be able to give those people. 

I mean, for me it’s the gift. They’re giving me the gift because to go to a place where– you know, I’ve spent time in Great Ormond Street where I was the parent when my daughter was ill and it was… I’ve known darkness in my life but that was the darkest period ever. (…) I’d always kind of done this kind of visits but after that the visits became more and more important because the kids, bless them, they are so strong, they are so courageous, but the parents are the ones who are slowly dying. And to be able to bring a smile or a giggle to these people it means everything in the world to me, far more than making films.

The Charlie Gard story makes one thing clear: If you want the American government to pay for the healthcare of your very sick child, just tell them evil liberal doctors are out to get you.

No, seriously. I’m not making light of this tragically horrific (and complex) situation. At all.

This is literally what is happening. 

The right wing are fine with stripping healthcare from millions of ill children. But this ill child is different because it’s like: “Oh, now we can win some voters!”

And please, let’s not pretend Trump truly cares about this baby or his parents.

How Single-Payer Healthcare Kills: The Charlie Gard Case Study

If you haven’t heard, Charlie Gard’s parents announced they will no longer fight to have him treated for his illness. They have surrendered because so much time has passed, and in that time his condition has deteriorated. Had they been allowed to take him to the United States for treatment when they first wanted to, or even any time during the months that followed, he would have had a great chance. Many doctors who specialize in Charlie’s condition, including leaders in that field, wanted to treat him and said his case was promising. However, because the courts and the hospital refused to let him go, he is now past the point of no return. Time was of the essence, and the courts wasted time until it was gone.

What does this have to do with single-payer healthcare? That’s the system the U.K. has. Some would like us to follow their lead. Here is how that system has effectively killed Charlie Gard (barring a completely miraculous recovery):

Doctors earn less. Under single-payer healthcare, the government takes over. In order to make the costs manageable, doctors are paid lower salaries. Now, most doctors in America make a lot of money. This isn’t about whether they get paid “enough” to meet their expenses. It’s about whether they are paid enough to keep them in the country.

Doctors leave. The highest-skilled doctors, the leaders of the various fields, the experts. They will leave. Other countries will offer them higher salaries, better conditions. Others may leave the system, choosing to work in private practices and accept only out-of-pocket fees from wealthy patients. Others may leave the profession for something that is less demanding or better paying. Still others may never enter at all, realizing the government-regulated salaries will not make their years of school and massive debt worth it in the long run.

The system overloads. With more patients than ever and fewer doctors, plus the inefficiency of any government-run program, we encounter a shortage of medical care. This results in long wait times for routine procedures, or even just for a check-up. Patients like Charlie with time-sensitive conditions may not see the right specialist until it is too late. Just like we saw with the poor management of the VA hospitals, patients may die waiting for care.

Innovation grinds to a halt. With the leaders of medical innovation moving to countries that offer better working conditions and salaries, and with remaining doctor prioritizing efficiency and standardization in order to see as many patients as possible, medical progress will become stagnant. Hospitals in a country with single-payer healthcare cease to be state-of-the-art. They fall behind on new treatments and procedures. 

Patients leave. Or they try to. Those with complex conditions requiring skilled specialists, who can afford it, will head to other countries to find those specialists. They’re not in the local hospitals. They were driven out by bureaucracy and stagnation.

This is where Charlie Gard comes in. His parents knew that doctors in America had treated similar conditions and were willing to treat Charlie. All they asked was for permission to try. They were denied, first by the hospital, then by the courts. Why?

The hospital first said the treatment was futile. Charlie was too far gone. We know this to be false based on the reports of other doctors who examined Charlie and his scans. The treatment had a reasonable chance of working. Then they said he wouldn’t be able to survive the trip. Both of these arguments make no sense, as the alternative was to let him die. Even when doctors in America offered to send the treatment and protocol to the Great Ormond Street Hospital, where Charlie was, they still refused. They went back to claiming it was futile, and was only prolonging Charlie’s suffering. Only all medical evidence said he wasn’t in any pain or suffering in his current condition. 

Why, then, did they refuse? A few reasons:

Single-payer systems offer no incentives to save lives. Lengthy hospital stays and complicated treatments are a drain on the system. To the bureaucrats, a patient with a severe condition and a low chance of recovery looks like a waste of resources. Better to say the condition is irreversible and untreatable.

Single-payer systems offer no incentives for patient-centered care. In order to keep up with demand for care with a shortage of doctors, single-payer systems turn to a maximum-efficiency model. Patients receive standardized, one-size-fits-all care, whether or not it’s what they need. Giving Charlie Gard an experimental treatment doesn’t fit in that model.

Losing patients to other countries makes the system look bad. When patients start leaving the country to seek high-quality care, the international community is forced to recognize that the system has failed, and that other systems with less government involvement are leading medical progress. This can exacerbate the problems mentioned earlier, especially the problem of doctors leaving the system. If you are specializing in your field, and you realize that patients in your field are leaving to go elsewhere for care, where will you go? As doctors leave or lower their standards to keep up with demand, wait times increase and patient care suffers. 

Once again, patients find themselves in a system where anyone outside the very wealthy receives either substandard care or no care at all. Except now, their incomes have been slashed to pay for this poor or nonexistent care, and they are no longer given the choice to leave. Now, bureaucrats are deciding who gets life-saving treatment and who dies while waiting to see a specialist. Courts drag out appeals until time runs out. 

Your rights are gone. The government now controls your life: your income, your health, your freedom. 

Charlie Gard is a victim of government-controlled health care. Let him be the last. 

So what system do we need instead?

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On Tuesday, whilst at Great Ormond Street Hospital getting treatment,
Ollie and Amelia got a very special personal visit from Prince Harry. 
For an hour Prince Harry sat with us talking and playing with our children, laughing and making memories. The very thing our children want the most in life, to be happy and having fun. We feel so much pride knowing that Ollie and Amelia are touching the life’s of the people they meet, with their love and their strength. The love, the support and the laughter within that treatment room on Tuesday will stay with us forever. From the bottom of our hearts we thank Prince Harry for his support, his time and his kindness towards our family and our journey with Batten Disease. It was truly incredible to watch him with our children and to have the opportunity to talk with him about our journey with Battens.

Prince Harry made a surprise visit to the Hospital where Ollie and Amelia were getting treatment, after their mother wrote to the Prince to let him know her children were garanted their treatments. 

Chapter Sixty-One

A/N: I know it’s not seven o’clock yet, but I thought I’d share the chapter with you early (tbh I thought you could schedule a post so that it was posted at a specific time, but apparently not, so I doubt any of my chapters will be posted at exactly 19:00). I’m sorry it’s been so long, but there’s a good fifteen chapters coming your way now :)

I hope you enjoy it. Please let me know - nothing means more to me than all your opinions 💖

Emmy walked beside Harry, both hands resting on her bump, as he pulled his suitcase along after him. They were in Heathrow Airport, where Harry would be catching his flight to Brazil for the Olympics. They had told no one about their little baby girl yet, and Harry had demanded that Emmy wait until he got back before she told people, because he wanted to see their reactions. Claire and Edward knew, as did the POs, but that was about it.

They were escorted to a private waiting room, and Harry collapsed onto one of the seats there, before gently pulling Emmy down onto his lap. He nuzzled into her throat as she loosely draped her arms round his neck. She felt slightly sick – she didn’t want him to leave again.

Claire was stood at the window, looking out, hands on her hips, at the miserable grey sky. She huffed. “Ed, you sure you don’t want to stay with Emmy this time? I’ll go with Harry.”

Edward raised an eyebrow. “No chance,” he grinned.

Emmy pouted. “Why does no one want to spend time with me?”

“It’s not personal, Emmy,” Edward laughed. “It’s just that it’s between you and a very hot country.”

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devilinhighheels  asked:

Mags I'm so pissed people use the case with that dying baby to shit on social healthcare. Like that child wouldn't have survived anyway, it would just suffer. EVERYONE would euthanize their pet if it was in a similar state because they don't want it to suffer but a child should live in pain? Why? It's like Americans use it to push their agenda about how much better it is to use a gofundme when you need surgery than not having to worry too much about the costs while grieving about their baby

“Um, sweaty, but the American doctor that wants to treat Charlie Gard has said that there’s a 10% chance of there being any “meaningful success” when it comes to treatment – nothing can cure him and that means there’s only a 10% chance of slightly prolonging his life or allowing him to maybe smile – because there were some positive trials on mice that had a different condition to Charlie, so, checkmate, we know what’s best!”

It’s such bullshit. 

I honestly feel terrible for his parents. Of course they want to believe that he’ll survive, but it’s just not going to happen. He’s currently in one of the world’s leading child hospitals, under the best possible care, but, hey, “socialised medicine,” am I right?

Oh. Wait. Great Ormond Street Hospital isn’t just NHS, it’s a famous registered charity to provide the best possible, state of the art care for children.

The amount of deliberate lies spread by American users on this site is absolutely appalling. 

Nothing is going to help Charlie Gard. He’s dying. There’s no cure. Nothing is going to save him. That’s the cold, cruel, bottom line here. And, to be blunt, his parents are delusional because they want their only child to survive. All of this deliberate lies on the internet? They’re fuelling that delusion. And that, to be frank, is one of the most disgusting parts of it. The parents are online, looking for support, and seeing all these people saying, over and over again, that the reason that their son will die is down to the hospital, which isn’t even remotely true. That’s going to mess them up for the rest of their lives, and make their child’s inevitable death even harder for them to deal with.

I’m just beyond sickened.

Princes William and Harry will honor their mother Diana tomorrow in the White Garden at Kensington Palace

Princes William and Harry will visit the White Garden on Wednesday afternoon, a space their mother cherished while living at Kensington Palace. In commemoration of the late ‘People’s Princess’, the garden was redesigned earlier this year with 12,000 of her favorite flowers now on display.

William and Harry will meet with six of the charities Diana was patron of including the National Aids Trust, Great Ormond Street Hospital and Centrepoint.