Sticky Blood-Hughes Syndrome Support
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Hip Hip Hooray :)

3 to me 2 to the doctor !

My word I feel like i have gone ten rounds with Tyson, well that's what it felt like but I only went to see my doctor.

He was in his normal arrogant mood & trying not to make eye contact.. it is no wonder my blood pressure is high.

I stayed calm but really i wanted to cry but he was now making me angry, so i said " with all due respect Dr I have listened to what you have got to say now will you please listen to me,

Oooo :( He didn't like that but with a face like thunder he had no choice but to listen, I had booked a double appointment.

With my heart going ten to a dozen I told him, no I didn't ask (I told him) I wonted a referral

to a Rheumy in Bath......I really wanted to see Dr McHugh.

At last a referral ( I felt like i had scored a goal ) I am not sure who he has referred me to but a least i'm heading in the right direction.

I was damned if i was going to give my Gp the satisfaction of making me cry.

But I can tell you all i am in floods of tears now. :( :) :( :) Jillymo

42 Replies

Well done, calmly does it, you may need to put it in writing if he does not do so. Let us know how it pans out. Mary F x


Why is it so hard work with Gps now days, I am still shaking from the experience.

What makes me cross is something is so obviously wrong & patients should not be put through this. :) tears all gone.


Way to go! Sometimes you've got to grab the bull by the horn to get it done. Good for you.



Well I always feel its good to let the old emotions out as bottling them up only leads to a bigger flare up later. So good for you for standing your ground and lets hope the referral leads to something better. x


I do hope I shall now get some answers not only for myself but for my son.

It has been such a long road may be now i am coming to the end.

Hope vyour keeping stable. :)


Perhaps your GP's still suing the Charm School! Good for you! John.


The old family doctors were so different in my younger years John, now you are lucky if they make eye contact let alone anything else.

If I have to see him again he will be in need of a lucky charm he is a horrid little man.

I have often wondered if he treats male patients with the same contempt . :)


Well done.

Dave x


I wanted him to refer me to Dr Mchugh but i am heading in the right direction Dave.

It saddens me to think we have to battle so hard when we are suffering so much.

Thanks for all your help.

Jillymo x


Well done you, I asked my Gp if I could be referred to another neurologist as mine was useless, he said no I couldn't pick and choose who I could see.

I wasn't on antidepressants at that time. Now I feel stronger I would ask him to put it in writing.

I have since paid to have a copy of my local Hospital notes. I have seen from that neurologist

Had only written no fits, nothing else no comments about my memory loss etc please note I haven't put a capital letter for neurologists as I don't think they deserve it


Bless your heart I know where you are coming from it's hard work .

I did the same & paid to see my notes, what an eye opener !

Yes you can chose who you see, tell him you want a second opinion.

I went to see one at my local hospital she was useless & I told her so,

all she could dish out was antidepressants.

Next time I go to see my Gp i am going with piles He is chinese, it will be ahsoles to him :) Sorry Lol


Ha ha


Well done, all power to you for getting through that without crying, normally the frustration kicks in for me and the tears flow when I get angry :'(


Lissy i have had years of coming out of consulting rooms in tears. Why are we put through years of misery due to there incompentance it is so demeaning.

Try & hold the tears back so you can get across what it is you want to say Lissy, strenght has come with age & years of torment.

If people on here were to see photo's of me they would be shocked that i have had to push so damned hard.

Good luck keep your chin up your not alone :)


You should be proud of yourself.

As for GPs I despair, whatever happened to the lovely family doctor?

Sadly going to see your GP is now more like having an interview with your bank manager. If you're lucky they may release some funds so you can get yourself a little luxury eg a trip to the hospital to see a consultant and find out why you feel so ill. Of course you will have to prove he is getting value for money and you are not just some mad hypochondriac!

We all care and support you

Hugs x


You have made me laugh what you say is so very true.

I love your sense of humour, hugs for you to. :)


Goodness I feel such empathy for you :) I could barely walk or talk and one neurologist discharged me with "I don't know what's wrong with you but I hope you get better soon" ??? My GP then got me into a stroke rehab unit. My diagnosis was very very long coming (20 years) and I now feel like a woman on a mission to tell everyone who misdiagnosed me. I am holding back for a few weeks so that I can put forward a reasoned conversation and so be taken seriously. I have made a start by talking to my stroke counsellor who has been my own personal cheerleader throughout all this. Stroke was never confirmed but as I presented as such I was treated.

Very well done - it sounds like you are nearly there.



It should not have to end up with a stroke to be listened to. Bless your heart you have got that same venom i have got for those whom have wronged & labled me wrongly.

I am glad to hear you have got support, my support is my son i dont want him to be treated as I.

When you hear others that are going through the same barriers it breaks your heart.....I hope you fulfill your mission. :)


Well done Jillymo, I recently told my GP I wanted a referral also, whether he agreed or not, he was neither up nor down about, and to be honest I don't suppose I need to see a specialist, just to be confirmed as APS, but its just the thought of being proved right, ive been ill for 20 years, ...and as the old poem goes, when I'm good, I'm very very good, but when I'm bad I'm evil, but what I mean by the is when I'm ill...IM ILL, and when I'm good, I get by... I start to think, maybe i am making it all up!!! ( i know i cant believe im saying it too!!) I have lots of problems with my employers, they just don't get it, and I do understand that, but its a struggle.... Best of luck, I wonder how long a referral takes!! Sarahx


I was wondering the same everything is so long winded these days so much for modern technology.

You say you have been ill for 20yrs then i feel you need to be seen by a consultant.

I know that poem so very well ! I felt more like a yo yo with more downs than ups.,

In my younger years the mood swings were horrid it is no wonder i am divorced he must have gone through hell....mind you i have no pitty he spent most of his time in the pub :)

Like you I questioned my self but dont go down that road Sarah you & you alone know your own body.

As for work they wont understand it is not then suffering they need educating.....It is a horrible roller coaster ride that we are struggling to get off.

I am guessing you are still quite young, I felt just like you.......I hope you get some help & relief for me I now have a little hope.

Here's a big hug <---(((*.*)))---> Ha ha i have got arms coming out of my head x


Jillymo, I sooooo sympathise and applaud your courage. I had an awful consultation with a ghastly, ignorant, arrogant, hostile GP (not my regular one) recently and could only 'cope' by telling him I thought he was missing things, flouncing out and slamming the door. For which I'm now in disgrace at the surgery! Just not fair is it?

Keep strong!


I have seen many of the arrogant nastys. I have cried, slammed out & thrown my file at one of them.

I didn't get in this much trouble at school,.... i suppose your stood in the corner facing the wall.

Some of these Gps think they are gods but in reality they are public servants.

Oh hun if only you knew how my heart goes out to all in the same situation, what a mess & how do we sort it facing up to them....go for it what have we to lose.

P.s you can take your hands off your head now. :)


Well done for being assertive and taking control in such a frustrating situation. It might be worthwhile to follow up with a letter . you could spell out the reasons you want. to see this specialist. Seeing the right person will prevent expensive and potentially risky delays. Your letter has to be kept with your notes and a paper/email record is harder to ignore. You can setout the symptoms you are concerned about and this will make it easier for him to do the referral. Also try to get another doctor. It really shouldn't have to be like this. all the best Ann


I will write a letter Ann although i am not that good at letter writing, thank you for the good advise........I shall do it now.

When i look at all the replys to my blog it just shows how many are in the same position as can we change it ?

We all need to write to our Mps. :) Take care x


Great job - I don't have your energy. I decided to skip doctors all together.



Energy whats that Jean ? If that swine of a doctor new how i struggled to get my self washed & dressed to get to the surgery then perhaps he would have treated me with more respect.

Take it from me i avoid them when i can. :) P.s Perhaps i should wear a string of garlic around my neck & carry a cross next time i have to go. x


Sue hit the nail on the head when she said how we are now viewed by our Doctors. Lets not forget they run a business and we are a commodity, instead of a hypocratic oath ringing in their ears they now see cash tills in front of their eyes. What condition does this patient have? How many points is that worth to us? How much will that bring in? Oh if I prescribe this it will cost me that? I cant refer for that or I will be penalised!! Thats how Doctors work now, none of the Family Doctor caring attitude because they are too busy thinking about the practise manager hovering at the door waiting to wrap their knuckles. Im sorry if that sounds cynical but as the new CCG's starts to hit GP's will only get less caring and more money orientated. :-(


I know just what you mean! I was diagnosed with Hughes in 2001 by my daughters GP when I was staying with her, told me I had probably had it since my 20's when I had 5 miscarriages followed by three PE's, 13 DVT's,etc etc. but could I get to see anybody -NO. I had to go back to my own (most recent) GP - before I recently changed again - said I know you are ill but I don't know what to do for you so perhaps you should look for another Dr! Thanks. As if it isn't bad enough getting to see them anyway. Spoke to my NEW GP and asked for a referral to St T's as I see three different consultants there already - his reply was oh that was in 2001 we can't refer to London now - why?? Costs!!

He said he could refer me to somebody local but when I asked who dealt with Hughes etc he didn't know. In sheer frustration I wrote out my medical history from birth to current day - I just knew I would need it someday - and sent it off to Prof Hughes. I had a wonderful letter back from him telling me I def had all the things I thought plus he felt Sjorgens and that my Lupus coagulant issue might well be Lupus. Now one of my St T consultants is doing me a referral to Prof D'Cruz at Louise Coote - fingers crossed for a final chance to get things sorted out. I have been on Warfarin now for 40 + years and never had the opportunity to see anybody who knows what I cope with on a day to day basis. Sorry for the rant just feeling frustrated and fed up today!


Oh Hun i know that story so damned well, mine was so alike yours.

I have battled for years with one consultant after the other.

I was taken in to St marys for the day where they found i had Hypoparathyroidism.....this was in 1976 but it was over looked & left untreated..

When it did come to light great excitement because it was rare & genetic.....I went from a nurotic to a very interesting lady over night !

It didn't last they soon lost interest in me & my son who also has the same diagnosis.

Hope you feel better tomorrow, keep your chin up. :) X


Yes Sue did hit the nail on the head,but I think we have known that for a long time. The frustration & poor health just leave us hoping that we might find that dear old family doctor that used to is sad really.:)

The Gps & consultants all have an accountant sitting on there rudy shoulder awaiting to pounce & tot up the pennies.

Your right Aps when we thought it couldn't get any worse in steps the CCG,, could it get any less caring ?

What is wrong with us Brits why are we not up in arms about it & writing to our Mps ?

Been there done that ! It is them bs ops edit that have put us in this awful situation.

It's alright for them they have only got to pass wind & they get medical attention :)


Hi Jillmo,

Hip, Hip Hooray from Stockholm! Can you hear it? Good news.



Dont get the banners out just yet let's wait & see how I progress. Thanx :) X


Well done Jillymo I really despair of GPs these days it's like climbing a long vey slippy slope on your knees.

I took until I was 44 to get diagnosed having suffered from childhood. I had a lovely GP back then in 2004 but consultants along the way were a waste of time.

Finally the power of the Internet and a trip to St Thomas and lovely Prof Hughes saved the day.

I see him at London Bridge but worry so much as my 2 lovely GPs have now retired and our practice is full of new jobs worth GPs non of of whom work full time. £150,000 for a couple of days a week, a disgrace. I have heparin, warfarin test strips etc on repeat but am scared that one of these new idiots will put an end to that.

My son was diagnosed by the Prof last year and this year he prescribed a 3 week trial of heparin, after the jobs worth had debated for ages, claimed he had to ask all GPs in the practice permission and the PCT he gave him 20 injections. Knowing he would run out before he saw him or the prof again. My son finally got an appt 2 weeks after they ran out, at 8am as he is very fatigued and works full time he was 10 minutes late. The GP refused to see him even though he had no one in as he said he got up early to see him, my son asked for at least a telephone conversation that day he refused point blank.

I got a letter from the prof while I was in London requesting continuation of heparin for him and he had to wait 10 days for another appt at 10am in his work time. This time instead of an indefinite supply he gave him exactly up to 30th May the day he sees the prof, so he will definitely run out again.

I could go on and on about the rotten tricks my practice now does.


Dont talk about slippery slopes to knees a still sore from climbing it.

I went to St Thomas years back, it is funny because i looked Prof Hugh up just out of interest.

I cant be sure but his face was familiar & i felt i had seen him before ! I am going back a good 35yrs, you know when you feel you have seen a person before it was like that.

My surgery is the same with doctors coming & going, when you do get a good one next time you go they are gone ! My surgery has more doctors than i have knickers these days. :)

I hope they aren't stupid enough to stop you med but you just dont know these days.

It took me three weeks for a double appointment to see my little Hitler......what ever you do dont be sick on a Sat or Sunday cos you got no chance.

I think they have all swallowed the same txt book. :) Hug


Cant you both change to another GP? I feel soooo depressed reading this and Ive had my medication refused today too after months and months of testing. My husband suggested changing GP's but they are all in the new CCG in my area so its like a local Mafia! If you complain they are just going to make life difficult for what you already get and I know I get some things that could be stopped. It really is survival of the fittest. I think they just want the weakest to slouch off and quietly die like animals do. Perhaps its time that there was more accountability - at least in America Doctors fear being sued but here, unless its in a Hospital, how many GP's are held to account apart from Harold Shipman!!


How many times can you change surgery ? it seems the same where ever you go.

Sorry to hear they have refused your med & for what reason have they stopped it ?

It really is the survival of the fittest, soon they will be putting us down like animals.

May be it was just a Hip without the Hooray lets lighten up lifes a bitch as it is.

without depresssion.

I went to the surgery manager but it seemed my Hitler of a doc ruled her so it got me nowhere. :)

We need some fun & a laugh or a good joke or two :) Hugs

Hey just had a thought soon they will stamp dates on us so when we are past our sell by date they will get rid. :) ok not funny


Your wish is my command :D Quite appropriate actually.......


I tell you what we would get better treatment at the rudy vets !

I shall tell you when i'm past my sell by date, i'm not quitev ready yet. :)



I sypathise entirely but can't you opt to see another doctor. My GP is the most fantastic doctor going and if she's not around there is another one who knows my history inside out, they even kept me on when I moved out of the area! A good doctor really makes so much difference so don't put up with it.

As someone mentioned, they are now having to manage their areas like businesses and this may highlight things to them that they are not expecting - such as a migration of their patients to another doctor in the same surgery? Or leave an anonymous complaint, they will have to take these seriously.

I hope you find a solution because I find far more great doctors than poor ones these days. Don't forget the vast majority of people in the health industry are there because they want to help people. Your GP is probably completely oblivious that he ia so abrasive.

Take care



Thank you for your in put of my problem. I have never had this problem until i moved to Swindon.

We had a lovely Gp when I first joined the surgery & we were building up quite a good regime of care, i was sorry to hear she had left the practise.

I am awaiting my referral then i am going to seek another practice.

I have written to the Gp concerned but it is to early to get a responce. it is horrid when you feel you are treading on egg shells.

My old Gps back home were not like this,. They would call you by name or shake your hand but not this one, he points to the chair & says 'sit'.

Take care



You are doing all the right things, just believe in yourself and keep pushing for what your gut says is right.

I'm sure he doesn't mean to be so difficult but that doesn't make it easier for you. I tend to tell doctors when I dislike their Style now - but I am like that.

You'll get there - good luck!



I am very much the same now days & tend to speak my mind but this Gp is a demon.

If you try to say something he puts his hand up before you have finished.

His attitude in the consulting room is acceptable but he head of the practice.

At least with my insistance I am heading in the right direction now.

It has been a long journey one that has taken most of my life !

Lets hope i am at the end of the road or at least the T junction. :)

All the best



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