I'm new here, and to be honest I'm a bit lost with the whole APS thing.
I've been ill since 2008 with many varied and unexplained symptoms, and in that time I've seen numerous GP's and specialists, been told that I'm diabetic (I've since proved that I'm not, although the doctors wont have it, what a joy), that I'm depressed, I have anxiety etc etc, but never any explanation about my symptoms, until I decided to ask for copies of all my bloodtests and went wading through them, only to find that my B2 glycoprotein 1IgG is elevated, which I've just had confirmed by a second test.
At this stage you would think I'd be happy, diagnosis shouldnt be too far away, but instead I've hit a brick wall and my symptoms are worsening, I've tried to pass information on APS through to my GP, whos the surgery "expert" on all things autoimmune, and reluctantly they have agreed to send me down to St Thomas' for diagnosis, but, and its a big but...
Fisrt they have to see if they need to agree funding from the PCT as its an out of area referal, which I'm told will mean a months wait, with no guarantee of funding at the end of it, and the possibility of an 18 week wait after the refereal has gone through, if indeed it does...
So, not wanting to wait I asked if they would refer me privately to St Thomas for diagnosis, which would save them money, but still enable me to receive treatment through the NHS after, and the answer is...no, they would consider it queue jumping if I did that and they then wouldnt accept the diagnosis or treat me based on it, having spent 3 years now not working due to my symptoms money is at best tight and paying for the initial consultation and tests would wipe me out financially, so I cant afford to pay for the treatment out of my own pocket as well.
So having done a lot of research I've drawn a bit of a blank about whether they can do this, as its basically denying me the treatment that I need, I'm suffering vision problems, constant headaches, lightheadedness and a "brain fog" constantly, and burning sensations in my veins which come and go throughout the day, along with little bursts in the capillaries in my hands and ankles and small clots that appear under my fingernails periodicaly.
After speaking with my GP yesterday (after spending 5 weeks asking them where my results were, then when they arrived I was told they were normal when they werent) in an attempt to move things along I was told that I didnt need to talk to them, thats they have 6000 other patients at the surgery and that my case would go through, but based on clinical need it isn't urgent, a situation that I dont accept given my symptoms (I went to my GPs twice in 3 days during one of my "episodes" in a confused state, struggling to speak with the mother of all headaches and was told I was depressed).
So sorry for the long rant, and believe me I cut the story very very short, my main question is can they really deny my treatment if I go private for a diagnosis, and if they can howe do I get some sorrt of treatment prediagnosis,
Many thanks for reading,
Andy
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I am so sorry that you are having such a rough time! I don't know enough about what they can and can't do treatment-wise. However I would strongly advise changing GP surgery or at least doctor within your surgery.
There may be ways of "queue jumping" but I'm afraid I don't know them. A letter to your local politican / MEP etc may help you? Also a complaint to the local PCT may be worth a shot...?
I'm sorry that I am not helpful but I just couldn't not comment on your story. Thank you for sharing with us. Try to keep your chin up, it will get better but you do need tp believe in yourself. You know better than anyone else when there's something wrong so keep plugging away.
welcome and glad to meet you. Sorry to hear you having such a tough time and feeling so unwell.
I agree with tasch's advice and have you spoken to practice manager at surgery?
Also may be worth ringing st thomas's see if they can advise on this.
As tasch says you know you don't feel right, so keep pushing. Sadly your story is not unusual here, can be a long road to diagnosis then treatment. Is a battle with autoimmune conditions and many gp's dont really know how to help.
My poor gp looks a bit like a rabbit in the headlights when i walk in! Bless him!!
I had problems with my docs & hospitals! read my 'profile' to see!!!
Jumped so many hospitals ( ok ...probably kicked out of! ) until my GP managed to get me in at the London St. Thomas, there I am hoping I'm in good hands at last!
The best advice I can say is keep asking your gp (go through them all untill you get the answer you're after) ....to get you an appointment & state how important it is for you to talk to the right docs that specialise in the Hughes field....as it is so hard for any other 'doc' to know enough about Hughes to help you properly.
I've had APS for 10 years now, I manage to deal with most of what it throws at me...but some things I now struggle with which does get me down....but I have learned how to adapt to try to still get the best out of life
I did a post on here called 'Symptoms olympics' it states a lot of symptoms a lot of us get.....I know it made many not feel so alone when read it with what they are going through that too will be on my posts plus I think its in the 'popular' post section down the right side?
My main concern with approaching the practice manager or heading a complaint in to the PCT right now is that the end result will be me being kicked off of their patient list, which although policy states they wouldn't do that the reality is they do (I've been through 3 surgeries in 3 years already, oops!!!)
When I joined this surgery my notes went missing for 5 months which really set me back, and it took a lot of shoving and threats of legal action from me to get them found again (its amazing how they can find them within 24 hours when you start aiming solicitors in their direction), although admittedly that wasn't this surgeries fault.
Despite my doctors attitude, which is clearly bad, although maybe misguided through lack of knowledge they have said that they will refer me when they have found out if they can do so without funding, and if they cant they will apply for the funding, so moving surgeries at this point would jeopardise that process, even if its far from ideal, so I'm stuck between a rock and a hard place right now.
I guess I'll have to get on to St Thomas tomorrow and see if this is something they commonly deal with, and if their open to telling me a way around the situation if one exists...
My main worry is the speed at which the symptoms appear to be moving, they did slow down for a while when I restarted the Asprin (150mg daily against the doctors advice after I had a stomach bleed) but now despite taking them they appear to be right back where they were, and to be honest I'm not even functioning on a daily basis, I appear to have real circulation issues and the "drunkeness" and eye symptoms are getting very unsettling, despite all of this I suppose I look pretty normal, if a bit dopey so its easy for a doctor with no knowledge to think theres nothing wrong (even when you've tried giving them information to look at as well as the contact details for the Hughes Foundation), guess you cant win em all...
So tomorrow I think I'll fire an email off to my local MP, although I guess it will be a waste of time, and then sit and wait the situation out unless things get really dire at which point I'll dump myself in at the local A&E and try to explain the situation there,
I started my APS journey to diagnosis via a private appt at London Bridge. My GP would not listen to me and I used the last of my money to pay for a private appointment to see a specialist - I did not need a referral. I just made the appt.
I saw a lovely Dr who spent an hour with me going over my history and worries and noting my symptoms and most importantly - listening to me. I told him I could not afford nor did I have insurance to cover any blood tests he wanted to do and he asked me what I wanted him to do.
I asked him to write to my GP with everything and prompt him that yes everything was suggestive with APS and he recommended a referral to St Thomas Hospital. This was in the February 2007 and by May I was sitting infront of a consultant at Tommies and diagnosed by July.
I had a strong clinical history which was very helpful.
My heart goes out to you. I have been so fortunate with my diagnosis and subsequent treatment. So glad you can rant on here though.
I know several people with Hughes who have gone privately to London Bridge Hospital for one session, and then been transferred to the NHS. I know it is regarded as queue jumping, but your health is the prime consideration. Has your surgery given you any time frames for approval? I wonder where you live, because there are now other consultants around the country who know about Hughes.
I manged to get in and get diagnosed via A and E..... that may be an option?
Your story is so similar to my own that I can feel the pain.
The symptoms you describe have dogged me for years.
One GP, years ago, even asked me 'What has happened in your life to make you so unhappy?' Answer nothing but ill health!
After years of struggling I was referred to a headache clinic and neurologist. It was discovered that I had been having mini strokes although the neurologist didn't tell me this he just said I may have to have half an aspirin. He then asked me if my mother had had Hughes Syndrome? She had died of complications caused by 'Autoimmune Disorder' although this was not diagnosed until after she died!
He wrote to my GP and said I didn't have enough symptoms for Hughes. This was when I decided to look it all up and found the Hughes website. It was like a revelation. The symptoms I had been struggling with for all the years were there in black and white.
Like you I asked to be referred to St. Thomas' only to be told that the PCT would not fund it. Like many others I decided to go to London Bridge. I requested a copy of my MRI scan (I had to pay £10) and also copies of my blood tests. YOU ARE ENTITLED TO THESE.
I went to London Bridge and saw the same Doctor as Annie. I love him to bits because he was the first person to believe me. He said he was 95% certain I had Hughes. He did want to do his own bloods which was OK for me as I had Insurance at the time. He saw me again in a month and confirmed the diagnosis.
Fortunately my GP agreed to fund my Clexane injections and eventually made a case to the PCT for me to be seen at St. T's. which was requested by my consultant.
I hope this helps and that you can in some way find the funds to get to LB. Once you are correctly diagnosed by a Specialist it is harder for GP's to deny you the proper treatment.
So sorry you are going through this awful time. Doctors are supposed to make our suffering better not worse!
I have a similar story to Annie. Ended up having a stroke but because I am seronegative still said I did not have APS. I then went to London Bridge got the diagnosis and have now had to be referred to Tommies because I was also dx with Sjogrens which needs Plaquenil. That has to be monitored by a Hospital so GP had no alternative but to refer.
The referral and time to appt was about five weeks, so not too long.
With your symptoms if I was in your shoes, next time I was in a situation that was worrying or required some urgent attention by a doctor I would take myself straight to St Thomas's A & E. Try and plan it for a Friday afternoon because I happen to know thats when the APS Clinic takes place for one of the senior consultants...tee hee!!
Seriously, if you go to the A&E there they cannot turn you away and will have to treat you. Sometimes it takes drastic action.
On the other hand if you went to London Bridge, saw a consultant, got a dx and medication to keep you going until the referral came through, that would also be good. Explain the situation to London Bridge because they will not do anything to jeopardise the NHS situation. No one needs to even know you have been there. If you saw the same consultant there that you eventually see at Tommies it would be seamless too. Could be pricey though.
Sue's post crossed with mine - She is spot on. If a consultant makes the dx a GP cannot deny it and will have difficulty in turning you down for appropriate treatment. If that treatment happens to be "out of area", as it is for most of us, well thats just tough!
How you get your dx is really not relevant for funding purposes, the fact is that is what you are suffering from and you need treatment and monitoring.
sorry to hear you are having problems, with a diagnosis. They cannot stop you been referred privately or treating you. They have a duty to care. You can write to your PCT saying you are having problems with your practice, refusing to treat you. You do need a diagnoses, as your conditions are prevent you from having quality of life. Do not give in. People on this site are with you, and know just what you ar going through.
My GP has called this morning and getting a referal out of area would mean awaiting a funding meeting next month with the possibility of not gaining the funding at the end of it, and they wanted to send me to see a rheumatologist at the local hospital, which tbh I'm not keen on.
After a bit of research over the last few days I've come across the name of a rheumi at Norwich, David Scott, who it appears knows about APS and given the alternatives I've been refered to see him so fingers crossed I should start to get somewhere soon...
Andy same thing happened to me ! In 2008 Had a strange experience lost my sight - brain scan showed white dots had blood tests showed APS. My GP knows very little about the condition. Had to teach myself all about APS did alot of research on the computer. I felt very frustrated and lost and scared. Could not work due to my health and still not working which is hard financially. Decided to write to Prof Hughes in 2008 and personally ask if I could see him.I borrowed the money to see him and the train fare because the PCT and the local 'Budget Pot' was quite tight and i did not come from that area. I paid to see the Prof and it was well worth it. The next few appointments I paid privately for to see one of his consultants. I have never looked back. I could not keep up with the Private appointments and explained to the consultant my financial problem - I had to ask my GP to refer me to St Thomas and luckily the consultant wrote back and it was agreed that I could be seen through the NHS when needed. I am still attending St Thomas and thank god I am. I feel in safe hands now especially when your GP's are not aware of APS !!! Good luck Andy !!! To be honest i had no problems with being accepted thank God !!!
Apparently it depends in which area you live in. Apparently different areas in the health world have different budget pots !!! They can only perform certain things and I was only told last week that one hospital will accept a request for a scan but another one cant !!! Have you ever heard anything like it !!! Its so unfair but thats the way it is-depends which area you deal with - how much they have in their pot !!!!!!
welcome and glad to meet you. I am really sorry to hear you having such a tough time and feeling so unwell.
I agree with all the adice you have give above just to add a few you may want to try or i was recommened all these things may not get you directly but do help
Ring St Thomas Directly
all PCT have a PALS team which when your GP is being unfair which i thing they are they can help you fight your case
Switch GPS
Walk into the A&E department of St Thomas they have to refer to relevent docs when treatinjg? (Would only recommend this as a last resort)
I really hope one or all of what people have said helps and thansk for sharing your story we all ain the same boat here and glad to help
Thanks for all the comments and replies, their much appreciated.
Well, another little twist in proceedings this morning, but hopefully for the best...
One of the GP's from my surgery phoned me to tell me the rheumi in Norwich no longer does any NHS work, and that he had phoned around and couldn't find anyone in the PCT who has any level of knowledge on APS, his next question was where did I want a referal too.
So I gave him St Thomas' number, he phoned them and then phoned me back to say he had left a message with them, and as he wasn't in this afternoon he had asked them to call him back in the morning with a view to sending me over there, so fingers crossed I may get in there after all, at least heres hoping...
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