A long-standing friend and member of PR has died through lack of medical support

[aaron_c]

I am so, so sorry @Countrygirl. The most frustrating thing about it (to me) is that is seems like your friend might still be here if only the doctor had given them sympathy. Not a cure, not a treatment, just sympathy.

What a...tragedy? Travesty? Both?

Will the doctor even find out that their patient died? If they aren't automatically notified by someone, it might be good for them to know what happened. I would like to think that, given a chance they might change their ways.

 

[mfairma]

This is very upsetting. I'm sorry. It is a horrible system.

 

[waiting]

@Countrygirl I am so sorry for your loss. What happened to him is so very, very sad.

Good on you to speak up for him, both before he died by suicide & now again to help him get some justice for the system's outright negligence.

 

[Daffodil]

I am trying so hard not to explode with anger as I need to keep cool if I am to be able to give a statement. It is important not to show emotion as it undermines your case............so thanks for saying it for me Daff.

Many thanks for your kind words @Bob and @ScottTriGuy

well I had to hold off posting cuz I wanted to say a lot more stuff that would have gotten me kicked off the board

other places are awful too but somehow the UK is the worst of all. I don't understand why. I cant believe the shrinks there are that much more powerful than anywhere else. it simply makes no sense. its like someone in power has a personal vendetta against people with this disease?

 

[Cheshire]

This is so sad, shocking and appalling... I'm really sorry @Countrygirl

 

[snowathlete]

I am very sorry to hear this @Countrygirl, this makes me feel so so sad and I can only imagine how bad it is for you as you knew him personally.
I am so ashamed of my country.

 

[Kalliope]

How heartbreaking. My thoughts are with you @Countrygirl

 

[Countrygirl]

You have all been so kind and I do appreciate it on this sad day.........too many of you to mention......please consider yourself thanked.........and hugged.

My friend came to see me a few weeks ago when I nearly turned up my toes after an attack of 'crescendo' (new one to me) angina as I had been too ill to speak on the phone for a few weeks. At least I am glad that I saw him in person then.

I have mentioned this on another thread, but when I was taken into hospital with the chest pain a few weeks ago to the town where my friend lives a doctor stood beside my bed and warned me that I would be treated 'unkindly' if the other staff became aware that I had ME. He informed me that ME didn't exist. This is the same hospital to which my friend would have to seek help. He didn't .stand a chance.

 

[barbc56]

So very sad. Again.

Condolences to his family.

@Countrygirl

You were a good friend. I'm sure that meant a lot to him. We need more people like you in this world.

Take care.

 

[Daffodil]

we clearly need to organize and do something. there is no other way. people in the UK have to demand changes and be aggressive. I don't know...but something major has to be done here

 

[undiagnosed]

we clearly need to organize and do something. there is no other way. people in the UK have to demand changes and be aggressive. I don't know...but something major has to be done here

Another thought I had is that we should hold the doctors involved accountable. The legal system may not provide justice as is often the case with medical negligence claims. However, if we knew the doctors we could list their names in an uncensorable public database and the outcome. There would be somewhat of an issue regarding patient anonymity as the doctors would be able to deduce who is involved based on the specifics of the case.

 

[alex3619]

uncensorable public database and the outcome.

It is not clear how this could be done. This idea is not new. Websites have done similar things, especially in the UK, and been shut down. Remember the long list of who died in the UK from medical and social neglect? It no longer exists. Threats of legal action were made against the ISP if I recall correctly. This didn't even list the doctors, just the deaths.

PS I think we should move discussions of advocacy elsewhere. They do not belong here.

 

[Gingergrrl]

@Gingergrrl Yes, he was a current but fairly new member of PR although I think he had exchanged PMs with some people here. I certainly recall him mentioning Hip on a number of occasions. He didn't tell me his PR name, and he had become too ill to communicate much recently.

How incredibly sad and I don't need to know the name. I was asking b/c I've been worried about a few people here lately and was wondering if there would be a memorial or charity or anything we can do in his honor. I will say a prayer for him and his family and you.

I hate writing this................she jeered when I said I believed my friend needed urgent intervention.

That is absolutely sickening and appalling.

I am trying so hard not to explode with anger as I need to keep cool if I am to be able to give a statement. It is important not to show emotion as it undermines your case............so thanks for saying it for me Daff.

I agree with Daff, that the UK has blood on it's hands. I've never heard of any other system with medical and social services so abusive, it should be criminal. I read this stuff and feel completely powerless.

 

[undiagnosed]

It is not clear how this could be done. This idea is not new. Websites have done similar things, especially in the UK, and been shut down. Remember the long list of who died in the UK from medical and social neglect? It no longer exists. Threats of legal action were made against the ISP if I recall correctly. This didn't even list the doctors, just the deaths.

No, I wasn't familiar with those websites. However, you'd do it the same way you do for file sharing, peer-to-peer using bittorrent. I'm using ZeroNet for another project I'm working on and it could also be used to accomplish this idea.

 

[Dechi]

I am so sorry for your loss, Countrygirl. What a tragic and useless death. May your friend rest in peace.

 

[Daffodil]

I guess the only way you can sue the gov't is if they refuse to give disability since the disease is classified as a real physical disease by WHO and other organizations. you cant really sue anyone else because there are no agreed-upon treatments for the disease. only those with money can fight until the money runs out.

we just aren't used to seeing money mean life or death here in the west I guess.

 

[perrier]

well I had to hold off posting cuz I wanted to say a lot more stuff that would have gotten me kicked off the board

other places are awful too but somehow the UK is the worst of all. I don't understand why. I cant believe the shrinks there are that much more powerful than anywhere else. it simply makes no sense. its like someone in power has a personal vendetta against people with this disease?

Sadly, Canada is probably worse. People die here because when they go to the Emergency they are not seen soon enough. A friends nephew died at 26 from meningitis because they didn't have equipment.

 

[Gingergrrl]

we just aren't used to seeing money mean life or death here in the west I guess.

I am used to seeing it mean life or death when someone's insurance flat out refuses to pay for a life-saving treatment or medication and the person cannot obtain it in any other way. But I am not used to seeing the overall attitude of neglect and abuse that just seems pervasive in the UK. I learned of it on PR and every day, it sounds like it is getting worse. I don't want to take the thread away from the beautiful soul and comrade that we lost today but am left with this icky feeling that the UK has blood on their hands and there is nothing we can do which makes it feel like two traumas instead of one.

 

[alex3619]

If someone hasn't started a thread on UK advocacy to discuss the advocacy stuff by the time I get back from my hospital appointment and a nap I will start one. We need a spin-off thread.

 

[Gingergrrl]

If someone hasn't started a thread on UK advocacy to discuss the advocacy stuff by the time I get back from my hospital appointment and a nap I will start one. We need a spin-off thread.

Agreed and it definitely needs to be started by someone within the UK but then let us know how those of us not in the UK can help. I feel very strongly about this but lack any real knowledge of how the UK system works (or in this case, doesn't work). I feel one of the biggest differences with the US is that here doctors are very worried about being sued and have very expensive malpractice insurance. So even if they do not give a Sh*t about the patient, they still care about being sued. But it seems in the UK, the doctors are untouchable and the threat of a lawsuit holds no power.