seen a hemo today waste of time and effort

[daftdog]

Hi people well i finaly got to see my local hemo today, not good as came from there feeling like i no nothing and be littled , and wanting to ring his neck, told me that my constant tiredness and fatige has nothing to do with aps, constant persperation is beacaus i am angry that i have aps,cold numb hands feet and arms also not related to aps and wen i told showed him all my bones click and crunch exept my wrists well that also has nothing to do with aps ( every one has clicky bones) kept telling me he sees worse patients than me who get on in life and could not wait to get rid of me to get next patient in as they double booked my appointment, dont no wot to do now give up i think and just suffer, any sugestions welcome thanks

[Annslack]

I totally agree. Make a complaint and don't give up. be prepared for a poor respouse from the hospital. In my experience they handle complaints poorly. They may address things behind the scenes though. and I always hope that the experience of having a complaint made about them wil make them think twice in the future. Find out who you can see who doesknow about AP S. It may be a Rheumie rather than haemotologist. Loads of us have been through this and it shouldn't be like this but your health and well being is too important to let an incompetent like him put you off getting proper care. Incompetent was the polite term. I was tempted to use some much less decorous language:-).

writing a complaint really help you ti stipulation thinking about that bad experience regardless of the outcome. You can get some excellent leaflets from the Hughes foundation to send with your complaintt Good luck and keep in touch Ann

[Annslack]

Sorry my predictive text produced stipulation rather than stop.

[craftysue]

Sounds just like mine! These visits, which are so important, and then utterly undermined by a so called specialist!

Sorry, fed up! I've been told to excercise through the pain and I will make a full recovery, just take pain killers!!!

[daftdog]

Thank you all so much for your comments purcked me up lots , im going to visit my gp first and ask for his report on what he said ,, and ask him to investigate my other gripes and find an aps specialist ( this is the hospital that forgot to put me back on warfarin 15 years ago, which caused me to have my second dvt , i should have known better) thanks all again ur all so strong with words and knolage its brill wish i could add more input but i dot know a lot, happy christmas to you all !!!

[Jade]

Sounds like my failed haemo appointment. Last year I asked my GP if I could revert back to heparin from warfarin as my INR is all over the place. He said a haemo must decide. I went armed with all my reasons and questions. However she took one look at me said I was pale, must be anaemic and did I want invasive tests for bowel cancer. I am not joking. I have been anaemic for years and hate iron but my body seems to have got used to it. She dismissed my idea out of hand. She told me Prof Hughes protocol was wrong and my INR should be 2 as 2 was safe. No need to try to maintain 3.5.

All she wanted were blood tests for anaemia, told me to eat liver everyday and booked me in for colonoscopy without my agreement and lied and said as I had lost weight I must have the most invasive test. I have gained weight not lost it.

I do not plan to ever see her again. My GP apologised for her actions and for sending me.

I was too scared to complain.

[emmaj]

Sounds just like my last one! My good consultant who knows all about aps said he wouldnt close the book on me he needed to see how it develops in me, the next one closed my file and wanted to take me off warfarin even after 3 strokes!! Unfortunately it is still a lottery who we see and how were treated - if its any consolation I saw a top doctor at St Thomas' in London and the first thing he questioned me on before I had chance to mention it was fatigue. Unfortunately the auto immune disorders have a long way to go to be acknowledged by the medical proffession,and given respect they deserve. mmaybe you could print off some research about the symptoms and provide them along with your letter of complaint and demand some respect x

[MaryF Administrator]

Hi there, what a horrible experience you have had, I hope you do complain and also feed that back to your GP. I hope your next experience is the opposite of this. Mary F x

[tim47]

These experiences were what we escaped from by going to St Thom's. not looking forward to having to deal with them again.