Sticky Blood-Hughes Syndrome Support
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Making a change to testing after 1 miscarriage rather than having to wait for 3 losses before we are taking seriously!

Hi there guys, in the UK we currently have to go through 3 losses before we are tested for things like Hughes, it often takes us a fight before anyone can take us seriously. Currently Scottish Care & Information in Miscarriage (SCIM) have set up a petition to get this changed in Scotland, which we hope to then promote to all of the UK on the back of the success. Here is the link to the petition if you can take the time to help us:

I know the majority of you are not from Scotland but if you can help us it means one step closer to pushing the NHS into taking better action overall. Why should we endure 3 miscarriages and go through heartache when one simple blood test may give us the answer?

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Here is the States, my daughter was tested a few months ago. Has migraines and since I has APS, no questions asked and insurance covered it. No signs of a problem. She gets married next month.


That's the difference here, we have the National Health Service which is free and despite us hard working people paying National Insurance when we need help it isn't given. Sometimes I wonder if you guys in the States have it right paying through insurance, at least you get taken seriously instead of fobbed off.


ObamaCare will change us to a system no better than you have. No competition and shortage of doctors.


My daughter has private insurance but when it was recommended she get tested because it was confirmed I had APS and she had had 5 miscarriages her insurance company refused to pay for her to see a consultant! Instead she had to ask her GP to refer her via the NHS and she had to wait before she could see anyone.

having Insurance is not therefore much good as they turn round and say they don't cover diagnostic procedures unless you are having symptoms. 5 miscarriages obviously does not qualify as symptoms!!


Insurance in America comes down to "you get what you pay for'". There are good insurances and some that are cheaper and are not as good. If you want to choose your MD, you need to see which insurance company she/he takes or payment is out of pocket. In general, JimQ is right. If you stick with the old faithful companies and not the new HMOs, they not only cover those costs but usually ENCOURAGE second opinions on serious cases as cancers. HMO's require permission, referrals, time and it's actually a little similar to UK. I have heard some real horror stories on this site. I still don't get the UK medical system! Doctors are very competitive here and there are plenty of them and our medical schools are packed (geneally with foreign students). I couldn't imagine Americans tolerating a system such as the UK's. Americans are customers as well as patients and the customer is always right. It doesn't always work out that way, but I certainly have a little more faith than JimQ in Obama. I think Americans will always reserve the right to fire their doctors if unsatisfied or go elsewhere. Frankly, I think America has one of the best medical systems in the world accompanied by some of the most generous philanthropists for the poor who really can't afford insurance and so are taken care of with charity. We are a charitable country with our citizens and other countries as well.


Hi lee

I have signed this, thanks for posting, I live in england, hopefully policy will get changed and save so much heartache the world over, 1 miscarriage is more than enough!!!

Take care gentle hugs love Sheena xxxxxxx :-) :-) :-)


I can not recommend too highly a book by Reid, ( forgot his name, " The Healing of the Nation,". In the run up to the debates over the US Affordable Health Care Act Reid took his bum shoulder to a lot of countries and compared his experience as a patient within the context of that country's health care system. I must tell you that Reid's personal political views remain, in my memory of the book, cryptic. is he a Democrat? Republican?! I dont know. But his book certainly opened my eyes to the pluses and minuses of the various approaches.

There are undoubtedly good things about the NHS. There are undoubtedly good things about the US employer based system. Ditto France, Canada, Germany, Japan.

Reid suggests that , here in the US, why not glean from other countries experience and data and try to copy the best approaches?

Again. I highly recommend this read.

But circling back to the subject of this thread-- the huge problem all of us have in common is the newness of our disease and the difficulty in finding doctors who are willing to treat us with the evolving data on diverse symptomology and treatments. I live in West Virginia. A beautiful state, but the medical community seems to me to be a bit like a boys' club. No, there is no real competition. A patient is not allowed to get 2nd opinions, ( in that specialists will refuse to see you if they know you have already seen a colleague,) and those out-of-state trips to prestigious medical centers are financially not possible for the vast majority of us.

Now my husband.'s emploter's insurance company is great! They have actually and improbably been my invaluable ally in my search for solving the mystery of my SI joint pain. But it's the luck of the draw. You get the job you get and it may come with good insurance or it may come with bad.

And throughout all the debates about " Obamacare" I recall the look on my Girl Scout Co- leaders face one afternoon. She had just come from work.(she was a committed and caring RN.). One of her patients that day was a woman of an unemployed coal miner ( no insurance) who had a gangrenous breast! She had delt with the oder, the fever and the rotting flesh for months because she knew her family could not afford treatment. And yes, this woman had gone to the ER the year previous, but her metastasizing cancer was not deemed an " immediate life treathening emergency.". So she died. Leaving a grieving

husband and 4 kids. And my friend ws late for our meeting because the woman smelled so bad that no one else could strand to be with the dying woman to hold her hand.

How's that for " the greatest health care in the world?"

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Thanks for passing this information on Leelaked. This is one of the main aims of the Hughes Syndrome Foundation which is why we have been talking with Angela Constance MSP and had the billiant publicity thanks to Suzanne Wilson in the Sunday Mail. It's great that Scotland has taken up the issue and will really help us persuade the NHS in England and Wales too. :) Hopefully, we will get the policy changed through out the UK.

I will put the petition on our Facebook page and also let the charity's trustees know what's happening as this is very important.


Quick update - I have spoken to Maureen Starkey of SCIM who are doing the lobbying and they are happy to join forces. Apparently, they have been working on this for years and have plenty of political backers BUT really need the signatures, so please sign up and help us stop women having to go through this misery. It is much more cost effective (25 times) to test than to have to go through the procedures for miscarriage, not to mention the human cost. If you're on Facebook try to get as many people to sign before the petition closes in September.


Really good news Kate thanks for letting us know I will give it another push!

Speaking as somebody who has lived in the USA and had the benefit of using both systems over there and the NHS. I can tell you there are ups and downs to both and I'm sure it depends a lot where you live in both countries. The grass is not always greener but without getting political I do think that what is happening in the USA is at least going to give those with nothing, something and that should be the over riding concern. At least then everyone will have some access to healthcare which should be everyone's right in a decent society.


I was tested after just one 2nd trimester loss, with my GP backing me, so hopefully things are changing. I couldn't have gone through what I did twice over, I wouldnt still be here. I will sign the petition gladly.


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