Sticky Blood-Hughes Syndrome Support

Distressing call from rheumatology clinic

I had a very distressing call from a doctor at the clinic this morning. I had rung the help line to get some advice about my vertigo, tinnitus, and INR readings, yesterday and left a message.

The junior doc I spoke to was the same person I had seen a previous appointment, she was rude, did not listen to what I was saying and intimated that it was all my own fault. When I got upset with her she put the phone down on me.

I called the professor's secretary, complained and asked to speak to another doctor.

The secretary called me back and said the doc will be talking to the professor when he returns from leave next week and then somebody will call me.

I am now very worried that they will discharge me for complaining.

I was discharged from St Thomas 18 months ago in the 'cull' and it took a lot of work to find and get a referral to this hospital in the north west of England that was recommended by the APS web site.

I am lay in bed crying, was already very depressed now feeling at rock bottom.

Hubby wants to me ring PALs and complain, but that might make things worse.

What do I do now?

14 Replies

Hi, you must contact PALs immediately and ask for help. Also have you tried ringing the nurse at the clinic, explain you are reluctant to involve PALs or to make a formal complaint but that your health must come first. MaryF


Hi Jan

I agree with Mary 100%

Your health must come first.

Good luck and keep us informed.

Dave x


Just got back from having some blood tests ordered by GP yesterday, who I got an emergency appointment with because the nurse had not returned my calls.

I tried to explain to the junior doc that I had seen the GP and she is writing to them, that's when she started talking about it being my own fault - for telling the GP I had Lupus and APS,which stops the GP for looking for other causes of my symptoms. I tried to explain that if I do not I risk them giving me treatment or medication that would interfere with my conditions, as they never read my notes, the one yesterday asked me what gastric medication I was on, when it was on the screen in front of her.

My distress and brain fog made very hard explain the situations and logically list my symptoms.

I have not got the energy or the brain power to deal with any more today so I will wait until I have spoken to somebody on Tuesday and if I am still concerned I will ring PALs.


I understand it is stressful, and tomorrow sounds like a good plan, and in the meantime, if you get a moment write in bullet points your symptoms, your history and your medication, keep it safe and always a copy in your bag so that you fall back on it if necessary, I do this, as at times if in flare I literally forget everything or the one thing I meant to bring up. MaryF

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Thank you Mary, I was in bed when she rang - feeling really poorly and she started having a go at me before I could organise myself.

I have symptoms, conditions, major events, and past and present medication lists that I keep updated on my PC and print duplicate copies of before any appointments or anything medical, GP, blood clinic, consultants, dentists, A & E, etc. I have kept all the old ones going back to the first time I went to St Thomas's in 2003 and save the new one under the current date (makes interesting reading)

But she caught me by surprise and did not give me chance to get my latest lists before butting in, by then I was too upset to even think straight..


I'm so sorry that you have experienced this, I had a similar one quite recently and just could not speak. It just takes the wind out of your sails. My husband had to call them and make his feelings known. Once they knew that he was speaking with my authority they sat up and took notice. Is there any chance he could be your advocate whilst you are feeling so vulnerable. As sexist as it is I sometimes think they take more notice when a man gets tough! Sorry this is so worrying for you and these are supposed to be Doctors, sounds more like bullies to me!


Do contact Pals, and then tell them you are making it an official complaint to the Chief Executive. Do not be afraid. I feel there is issues going on in this country with the NHS, since the funding has changed. You are the one that is suffering and you deserve to be treat better than that. Best wishes.


I am so sorry to read your posts. Absolutely agree with what Mary has suggested and APsnotfab. PALS must know what has happened and the doctor must take responsibility for her rude and unhelpful behaviour towards you. Having experienced similar myself it makes me so very angry on your behalf. Very good luck and sending a great big hug.


I'm really sorry you are experiencing this with your doctors. I think the others have given some great suggestions.

I just wanted to add that when you mentioned that the dr said that mentioning the apls and Lupus to the GP makes them stop looking this struck a chord with me as that is exactly what my GP is doing now. Any issue I have now he shrugs his shoulders and says ask my rheumotologist ( it takes me at least 6 months to get an appointment with her).

So even though that dr was rude there may have been some truth in what she/he said. Having said that they should treat you with dignity and respect.


This all sound like buck shifting or budget shifting to be more precise. Everyone wants the cost to fall on anothers budget. Sort of makes sense with certain instances I have seen myself.

I maybe should add, it has not occurred to me yet with the the rheumatology side of things but have seen it with my anti coagulation clinic and my gp has possibly used stalling tactics for potentially similar reasons


You have a duty to yourself to mention your illnesses-why on earth do we have medi alert bracelets etc to advise of our conditions/treatments, it seems to me that it is the duty and responsibilty of the doctor to look and think outside of the box and decide if symptoms are due to a condition or not, not you-they are supposed to be advised of conditions and treatment so THEY can decide if its related or not. You would expect a doctor to be a bit peeved if you DIDNT tell them you had a condition and they treated you for something else and then it turned out it was aps/lupus related all along. I would contact PALS,they are at the very least supposed to treat you with dignity and respect-sometimes I think thee doctors get a bit perplexed with our conditions and dont understand them,and take it out on us-ive had it - chin up and vent your anger in to positive and use it to get yourself sorted-and them xx

1 like

Thank you Emma, you have expressed my feelings so much more clearly than I could have done. Those are the sorts of statements I will be using in my conversation with whoever rings me on Tuesday.

In fact thank you to all of you, I intend to go through all your comments and use them to make bullet points of the things I want to say, that my brain won't let me get out.

I will keep you updated xxx


I had a meeting with the consultant's secretary yesterday to discuss my concerns. I have a call back today.

I have an appointment with the consultant on Wednesday and hubby has agreed to come with me.

I am so glad I preserved, feeling much brighter


I am pleased that things have settled a little for you, not nice to have the stress, good on you for persevering in the right direction in the face of adversity. I hope you feel better soon. MaryF


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