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Author Topic: Abandoned by my country  (Read 2971 times)
WfMonkey
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« on: May 19, 2011, 08:42:40 AM »

So I flew to England yesterday to visit my parents and go for testing with my wonderful brother who is risking his life to save mine. We went to hospital this morning and met with the transplant coordinator and both had a lot of blood drawn. The coordinatortold us the blood was being couriered to London for same day testing and walked us through the various stages of the transplant process and what to expect. We are scheduled to meet tomorrow with the nephrologist that I have been seeing on and off for the past 2 years for results and next steps.

About an hour after I return from the hospital, my parents' phone rings and it's for me. I get a woman on the phone asking me about my citizenship. I was born and bred in England, and paid tax there for many years. I offer my passport number. She asks where I work and I tell her that I work in the US. She asks if I am paid in the US and I tell her I am. She then tells me that unless I can produce an employment contract from a British company from the past 5 years, I am ineligible for treatment in the UK. I tell her that I can't  do that, and she tells me that I will be billed for my visit to the nephrologist tomorrow. I explain that my entre family lives in the UK, my donor (brother) has lives here all his life, and that my only chance for long term survival is my brother's kidney. She actually said "I don't make the rules I am just doing my job", an hung up on me.

I was so shocked I didn't even get her name. I've been receiving treatment for my kidney disease in England for almost 2 years now. I've seen several doctors, all of whom know I work in the US. They did compatibility testing for me and my donor THIS MORNING Nobody has ever mentioned anything about residency.

I think this bureaucrat just signed my death warrant.
« Last Edit: May 19, 2011, 08:45:23 AM by WfMonkey » Logged

2009: Diagnosed with FSGS, GFR=40
April 2011: GFR = 12
Pre-Dialysis. LD in place, testing underway
Willis
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« Reply #1 on: May 19, 2011, 12:14:19 PM »

All I can say is to try someone else. I had to call our Social Security office here in the US and some dingbat said I didn't have enough work credits to be eligible. Had that been true I'd be sunk. But I knew that wasn't right so I hung up and called again (waiting in the queue for a half hour). The second time I got someone who seemed to care and she confirmed that I was eligible after all and professionally answered a lot of other questions.

Since you've been working up to this for 2 years already with no one bringing up this issue, that bureaucrat may be mistaken or have you mixed up with another account. I'd go back to that office to confirm your rights and hire a counselor if necessary.

 
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greg10
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« Reply #2 on: May 19, 2011, 01:40:52 PM »

WFM, I am sorry to hear about your situation. You probably know all the conditions by now, but perhaps it is worth going through the following list again and see if you qualify for any other conditions.  Perhaps you will now need to live in the UK for 12 months before going forward with the transplant:


Free NHS treatment at hospitals

Even if you’re entitled to free GP treatment in the UK, medical treatment from hospitals will not necessarily be free, unless your condition is considered to be an emergency. You can receive NHS hospital treatment for free if:

You’ve been living legally in the UK for at least 12 months (temporary absences of up to 3 months are ignored).
You’ve come to work in the UK, either as an employee or self-employed person. This does not include people on short business trips, and it only relates to people who are actually working, not just looking for work.
You’ve come to permanently live in the UK, and have had an application for permanent residence approved.
You’re studying in the UK on a course that lasts 6 months or more, or which, if it lasts less than 6 months, is substantially funded by the UK government.
You’re a refugee or asylum seeker, or are waiting for your asylum request to be considered.
You’re a UK state pensioner that spends up to 6 months a year living in another European Economic Area (EEA) country, but are not a resident of that country.
You’re working in an EEA country but are paying compulsory UK national insurance contributions.
You’ve been working abroad for no longer than 5 years, but have lived legally in the UK for ten continuous years at some point.
You’re from an EEA country but are referred to the UK for specified treatment with an E112 or E123 form.
You’re an unpaid worker with a voluntary organisation that offers services similar to those of a Health Authority of Local Authority social services department.
You’re employed on a ship or vessel registered in the UK or working offshore on the UK sector of the Continental Shelf.
You’re a member of the UK armed forces, or a UK civil servant working abroad who was recruited in the UK and employed by Her Majesty’s government.
You were recruited in the UK but work abroad for the British Council or the Commonwealth War Graves Commission.
You receive a UK war disablement pension or war widows pension.
You’re a diplomat, or diplomatic staff, working in embassies or Commonwealth High Commissions in the UK.
You’re working abroad in a job financed in part by the UK Government in agreement with the Government or a public body of some other country or territory.
You’re a prisoner, or detained by the immigration authorities, in the UK.
You’re serving NATO personnel, posted in the UK, and are not using your own or UK armed forces hospitals.
You’ve been referred by your home country for specified treatment in the UK under the terms of a bilateral healthcare agreement.
You're a missionary working overseas for an organisation principally based in the UK, regardless of whether you are receiving a wage or salary.
You have been formally identified or suspected as being a victim of human trafficking.
You are the spouse, civil partner or dependent child of anyone who is exempt under the above criteria, if you are living permanently with the exempt person. Coming to visit the exempt person for a few weeks or months does not give exemption.
If you don’t fit into any of these categories, you will still be able to get NHS treatment for conditions that occurred after arrival in the UK only, if you fit into the following categories:

Anyone who normally lives in another EEA member state but is visiting the UK.
Anyone, or the spouse or child of anyone, receiving a UK state pension who has either lived legally in the UK for 10 continuous years at some point or has worked as a UK Civil Servant for at least 10 continuous years.
Anyone, or the spouse or child of anyone, who is a national of a country that has signed the European Social Charter but is not entitled to be provided with services under a bilateral agreements (currently Turkey and areas of Cyprus not covered under the EEA arrangements) and is genuinely without the means to pay for their treatment.
Anyone, or the spouse or child of anyone, who has lived legally in the UK for 10 continuous years at some point but who is now living in another EEA member state or in certain countries with which the UK has a bilateral healthcare agreement.
Anyone who is entitled to receive industrial injury benefit from Israel if the treatment is in connection with the industrial injury.
Anyone living in a country with which the UK has a bilateral healthcare agreement.
So, what happens if you don’t fit into any of the categories that we’ve listed? Well, technically, you should then be charged for any UK medical treatment that you receive. If a hospital thinks that you need to be charged for treatment, you will usually be interviewed by an administrator. They will probably ask for any evidence that you’re entitled to free NHS treatment.

If you think that you will be charged for medical treatment, but can’t afford to pay, then you should still talk to a hospital administrator as they may be able to help you. The NHS is supposed to treat its patients in confidence, so even if you’re not living in the UK legally, your details should not be passed on. You could also contact other organisations for help, such as Citizens Advice Bureau. The Citizens Advice Bureau provides free information and advice online, over the telephone, and in person at many locations around the UK. In some places they even operate from within local surgeries and hospitals.

For more information about who has to pay for NHS hospital treatment in the UK, and for other information such as which countries have reciprocal/bilateral healthcare agreements with the UK, see the Department of Health Website.
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
-Lady Noir-
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Where's your will to be weird?

« Reply #3 on: May 19, 2011, 05:03:04 PM »

That is SHOCKING!! Hope this all gets sorted and everything works out for you and your brother   :beer1;
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free

..Nik..

Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with  IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009


Started CAPD June 2009
Stared APD September 2009

ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #4 on: May 19, 2011, 07:59:44 PM »

People are jerks! Don't give up...find a way! I know you can do it!!!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
WfMonkey
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« Reply #5 on: May 19, 2011, 08:49:01 PM »

I'm a British citizen. I was born here and grew up here. I have spent more than half my life living here and paying taxes here. My entire family is here, in fact we have lineage going back to the doomsday book, which means that I can prove that my family have been here for over a thousand years. When times got tough and I couldn't find a job in England, instead of just claiming unemployment and living off the state I took a job overseas. It led to other jobs overseas and I've been gone a few years. I didnt realize that decision would cost me my life.

The only option I can think of is to quit my job, move back to England and claim disability. The UK will be required to pay me disability and provide me housing. Ill be an unproductive drain on society. Of course if I came from Afghanistan I could just claim political asylum and be eligible for unlimited medical care,, housing and living expenses while my asylum case was under review,

The reality is that I am insured in the US and have to pursue transplant there. Im just deeply disapponted and have wasted time and money flying 5,000 miles to get slapped in the face. It was bad enough when my wife abandoned me in my hour of need. I never expected my country to do the same.
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2009: Diagnosed with FSGS, GFR=40
April 2011: GFR = 12
Pre-Dialysis. LD in place, testing underway
WfMonkey
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« Reply #6 on: May 19, 2011, 10:20:39 PM »

Now I got an email from social security in the US telling me that I have been denied Medicare coverage because I haven't supplied satisfactory documentation of my disease. I'm guessing this can be fixed, but today isn't a good day to get that news!!
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2009: Diagnosed with FSGS, GFR=40
April 2011: GFR = 12
Pre-Dialysis. LD in place, testing underway
rsudock
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Posts: 1351


will of the healthy makes up the fate of the sick.

« Reply #7 on: May 21, 2011, 04:44:28 PM »

Now I got an email from social security in the US telling me that I have been denied Medicare coverage because I haven't supplied satisfactory documentation of my disease. I'm guessing this can be fixed, but today isn't a good day to get that news!!


blah!!!  :stressed;


Sorry to hear this!!

xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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