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Sticky Blood-Hughes Syndrome Support
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After a journey that included a GP that refused to believe I had APS even after Prof D, Cruz wrote with my diagnosis, being struck off by said GP, seeing someone else during Prof Dcruz, absence from the lupus unit who refuted my daignosis,having it reinstated when he returned,but still being discharged, being re referred but receiving a letter saying that I didnt need to be seen but the nurse would give me a call to discuss my concerns, no call arriving even after spending 3 months leaving messages on the nurses answerphone,developing new symptoms and going to A&E to be told I need to see my consultant,being unable to get hold of him even after telling his secretary twice that A&E had said so, I finally went private and saw Prof Khamashta, who referred me to himself on the NHS and when I saw him for my first NHS appt he said that he was sorry that I had had to go through that, and that it should not have happened and that he would not discharge me and would sort me out as he thought there was something else other that the diagnosis,s that I have already )APS, Fibro, Sjorgrens and thoracic outlet syndrome)

He ordered a brain MRI and a full bloods and I was due to see him with the findings in July.

I found him to be a very warm and understanding man and felt happy that I was to be under his care

However, I received a letter in the post moving my appt(which I did not mind) and noticed it had also changed who I was to see to a Dr I have never heard of (which I did mind)

I rang the appts. desk to say that I would only see Prf Khamashta even if I had to wait longer but was informed that he had left the unit, in fact has left the country and will not be back for at least a year if at all.

I am worried that I am going to go round in circles

I know I am not the only one who will be sad that he is gone

9 Replies

Hi there, I am sorry you have had such an awful time, I hope you reported your GP. You are not the only one, I was struck off with small children years ago, from a surgery with a reputation of treating patients harshly or not at all, for decades. I did not let it go and it has a completely new team in there now, not that I use it. I proved in my area that patients were not being allowed to move GP surgery at a time long past that policy in the NHS. My children had scarlet fever when we were struck off and I had an out of control infection, I complained and that was enough to strike us off, so yes I understand.

Please make sure when you see the new Dr, at the hospital, that you take your medical history along in bullet points, and make sure you stay with that unit, explain what has happened to you, don't go in with guns blazing, see how this one works out, and if you have concerns, writing to PALS will be the next step, copied to the relevant places.

You have been through a lot of stress with this, and like others I do understand, it took me years to get full diagnosis for our overlapping conditions and it is not a nice situation to be in, but let me tell you it does get better.


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thanks for that Mary

Yes I did report the GP,in fact I believe that my making the complaint had a lot to do with my being struck off.

I have a nice GP now,but it is a bus ride away

Keeping my fingers crossed that the Dr I am to see at the unit is good,but still disapointed as felt I had struck gold with Prof Khamashta


There is a dire culture out there, where if patients flag up dire concerns about bad medical care, often the patient is turned on, and of course it is the same for medical staff who blow the whistle, it is fundamentally wrong, and unfortunately the medical regulator is still a century behind in terms of catching up with the correct modern attitudes. MaryF


Perhaps you can keep tabs on when Proff khamashta is available in the UK again by contacting him via: lupus.org.uk/news-events/re...


your frustrating experience reminds me of that Kafka story. Sorry.


Kafka story??


Ah, that's why my appointment's been changed from Prof K to a Dr Sangle? Next month - thanx for the info - both my daughter and I are/were under Prof K - will update you after June 25th re new person! X


yes, thats who I will be seeing in July, do let me know how your appt goes


chrissybell how did your appt go?

was not that thrilled with mine

He was very pleasant but he said all my bloods were normal did I want to be seen again in a year or should he discharge me

I said I didnt want to be discharged and that Prof Khamashta said he wouldnt

He said that prof Khamashta had thought I had another condition as well as the APS but that the tests were negative so no real need and that my APS only really affects me when I am pregnant

I didnt have a lot of faith in him as I have a lipoma on the inside of my elbow which is pressing on a nerve and causing me lots of numbness and pins/needles,so I said I have had a lot more numbness etc the last few weeks,is it the lump on my elbow pressing on the nerve?

he said no thats just muscle!

Its deffo not muscle, it fills with fluid and sometimes becomes infected (cellulitis) and I have had it confirmed at the hospital that it is pressing on the nerve

Have been to my local hospital since as some new swellings suddenly appeared on my arm and she said when atre you seeing your rheumy and I said a year and she said try to bring it forward

My local hospital have said that it is odd as they are definite that something rheumatoid is going on but my bloods are normal


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