How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!

[bluebutterfly101]

I apologise in advance for the rant....

I had my first appt at the Louise Coote Lupus Unit in July of this year after writing to Prof Hughes and having no funds to see him privately, he wrote me a lovely personal letter and told me to get a referral to Prof D'Cruz at St T. Fortunately one of my other Consultants at St T agreed to do the referral for me, and after a 7 week wait I got my appt.

Well firstly, I never got to see Prof D'Cruz as requested, but one of his 'team' I was told. This was a disappointment straight away as I had not heard of this man or seen his name anywhere in any listing about knowing how APS works. He sent me for a whole load of blood tests - which seems to be the norm - and asked to see me three months later for the response. In the first meeting I had given me my whole life medical history (I am 65 and been on warfarin for 40 years, but only diagnosed with APS in 2001) and my full list of meds and conditions previously diagnosed. Having looked through them he said there were probably a few of my meds that could be changed which would improve my situation and that some of the conditions I had been diagnosed with were generally associated with APS.

I must say I was very disappointed to have to wait 3 months for the follow up but was told this was normal.

So Monday this week I went back for my follow up appt - and what a disappointment that was. Firstly I saw the nurse who said my BP was 176/102 and that she was very concerned and would make a big note for the Dr. When I did get to see him I was not in with him for more than 10 mins! He told me he was pleased to say I did not have SLE but did have Primary APS and Lupus Coagulant. He also said that as I was on warfarin already that was the right treatment for me and to just stay on it - even though I took my yellow book to show him how erratic my INR levels were. Even with numerous raising of my warfarin dose the INR had not gone above 2.1 in over 5 weeks (the week before it was 3.9 and then suddenly dropped for no apparent reason). He said to stay with it and it would sort itself out! He never even mentioned the BP even though I was feeling extremely ill and he said to make an appt with my GP soon.

He did not give me the results of any of the other tests, nor let me ask him any questions about them, even though Prof Hughes was adament I had Sjorgens. He said that to go back under my GP and he would see me again in ONE YEAR in case any new thinning agents had been approved. He did not change one of my meds as previously said either as he felt that should be left to my GP who would be looking after me - the big issue for me here is that my GP doesn't even know what APS stands for and neither does the nurse who does the INR.

On Tuesday morning my INR had dropped again to 2 and I was feeling so ill that the INR nurse called the duty GP to see me. After talking to me for a few minutes and taking my BP she rang the DVT nurse at our local hospital and told her of the concerns - I have had 3 PE's and around 18 DVTs most of them whilst on warfarin except for the first PE - and was told to go straight to the hospital A&E. They were brilliant there and the nurse who dealt with me knew all about APS etc. She took bloods and arranged a scan. She gave me a dose of Heparin as she felt I really needed to get my INR level up. Fortunately I did not have a clot at the time but I have had a stroke in May and several TIA's as well as falling over and generally feeling really ill all the time.

I am sorry to dump all this on you but can you please advise me where I should go from here - I have suffered all these years without any help from anybody apart from seeing a Heamatologist and Rheumatoligist in 2011 when diagnosed. What can I do to get looked after properly? Have you any advice? Many thanks

[Tonkawoman69]

Sorry to here you are having so many problems. I can connect with you about your problems. I also went to The lupus centre at ST Thomas and was told same. Blood tests taken. Have APS and tested positive for lupus inhibitors but don't have lupus. I was discharged and referred back to GP who like you doesn't have a clue about APS or INR levels. Hematology have written to them about 3 times to explain course of action. I've had a blood clot in arm. Its so frustrating. Its a matter of keep bugging them and making g yourself heard. Bug the consultants, there secretaries everyone. Don't leave them alone. I hear loads of people complaint about NHS and not getting support. Fight for your right. Its hard but just gotta keep going .

Andrea

[bluebutterfly101 in reply to Tonkawoman69]

Thank you Andrea, it helps knowing you are not alone in all this. Why should we all have to suffer so much on top of what we already have to put up with the conditions we suffer from? Why is that there is not more knowledge out there for us and more places we can find professional help? Sorry you have had similar issues and I will find some way forward with this. I don't like it but I accept I don't like it and will make sure I can find somebody who can help x Monica

[Hidden]

It sounds as though your local hospital seems to know about APS, so would it be worth trying to find a doctor there? Our charity has a list of APS specialists throughout the UK as we foresaw that referrals and treatment at London would be limited once the government changes came about - please have a look at: hughes-syndrome.org/self-he...

Failing that, if you really want to stay under the care of the London team, you could ask to be referred to Prof Beverley Hunt and/or Dr Karen Breen as you are primary APS and these patients are now being encouraged to switch from the Lupus Unit to the Haematology Department at St Thomas and Guy's.

[bluebutterfly101 in reply to Hidden]

Thank you Kate for this information. Firstly, although the nurse at A & E is a DVT nurse that really helped because she knew all the issues that could arise, but I cannot find any Doctors in the Milton Keynes - Bucks area on the listings. The nearest I can find is Northampton which is quite a way, although not as far as London, but easier with access via the ambulance service. The big thing for me is that I am already under three other consultants between St T and Guys and just wanted to keep it all together. If I switched to the Haematology Dept who would look after all my joint pain issues through Arthritis, Fibromyalga etc? Would I also have to change to a Rheumatology Unit? Sorry to seem so thick about this but it has all really thrown me. Monica

[Hidden in reply to bluebutterfly101]

I can see your problem - and it's a pain that there's no one nearer to you. If you're already under three consultants at GSTT, could you just see Dr Breen for your APS and the rheumatologists for your arthritis etc? It's just a thought, as the Lupus Unit will be moving into the Rheumatology at Guy's shortly. so it would save you having to visit too many sites.

[bluebutterfly101 in reply to Hidden]

How would I go about getting onto their books please Kate? Would I need to get another referral from somewhere? This would seem a good option if I can do it. Thank you

[Hidden in reply to bluebutterfly101]

I believe you can ask to be transferred from the Lupus Unit to Haematology. Apparently, a lot of APS patients have received a letter from head of the Lupus Unit encouraging them to do this so, hopefully, it won't be a problem for you either. Hope it works out for you.

[Tonkawoman69]

Hi Monica , its Andrea Do you live in Milton Keynes. I do and find MK hospital rheumy horrible. Have refused to see him and his team as he wrongly diagnosed me and was so rude I just felt deflated. I see Dr White in Hematology she good. Just see a neurologists there and he wasn't much help either. Now I'm under John Radcliffe after a recent collapse. So got a very good physio who has got things moving. So feel a bit more confident. Need to see the right people to get any help. So as suggested get referrals to other people. Hope you get right answers. Just keep bugging GP and consultants.

Andrea

[Hidden in reply to Tonkawoman69]

Hi Tonka - please can you give me the details for Dr White - your experience could really help other patients x

[Tonkawoman69 in reply to Hidden]

Hi Kate,

Well unfortunately I finally had to put a formal Complaint into MK patient liaison team about his rudeness, arrogant manor and his formal letter which stated I did not have APS and he had found nothing g wrong. When only a more the later I was diagnosed with APS by hematology and later on had a second opinion by the Lupus Centre at St Thomas. Who have confirmed I have tested positive twice for the Lupus Inhibitors and APS. I have been recently under physio care for arthritic problems due to wear and tear In my neck and at moment having g traction on the neck. Which again he said I had not got arthritis. He was personal, arrogant, rail led at me and pretty much gave the impression I was wasting his time. I am pristinly recently getting g a second neurology opinion from John Radcliffe as apparently I'm normal , yet I can't walk properly due to pain and numbness. I have memory loss, bladder and bowel problems. My speech goes sometimes. I have all the signs for MS but apparently prestinly normal. Physio at Oxford doesn't agree and she has put in a referral to see neurology and orthopedic consultants. Plus looking at another gyni operation for cysts, prolapse and other gyni correction surgery. I'm not prepared to be robbed off or told no hi g wrong when everyone can see obviously there is something seriously wrong with my mobility. I can't even drive. I hope that helps.

Andrea

[bluebutterfly101 in reply to Tonkawoman69]

Hi Andrea, yes I do - I am in Wolverton. I remember going to John Radcliffe many years ago to their Rheumy to have injections into my palms/fingers. They were very good. I also believe I saw Dr White in 2001 and she was the one who told me I had the Lupus coagulant. My GP had only told me I had APS and anti nuclear antibodies? If you would like to keep in touch please email me on my direct address and I will email back. Might be useful to have somebody close by to talk to. Monica

[Tonkawoman69 in reply to bluebutterfly101]

Hi Monica, I live in Newport Pagnell. I like Dr White she listens to me and has helped me get things sorted. She is doing a thrombaphilla test which I am awaiting the results. I see her again end of month but need another test 12 weeks apart from first. I'm seeing a few consultants at JR as like I said not having much luck at MK. Would never see rheumy at MK and still awaiting Dr Smiths reply to my letter. He would t admit fault. So have you got kids Monica? I've got 3 girls. I was bit worried as heard they need testing for APS but not met a rheumy to tell me otherwise. I will send you a message with email address.

Andrea

[SueLovett]

Hi Kate,

Do you know if MK will be going over to Guys as well?

x

[Hidden in reply to SueLovett]

Hi Sue - not sure but will ask him next week x

[SueLovett in reply to Hidden]

Thanks Kate,

I so hope I can continue to see him as he is the only one who looks after me.

GP kind but clueless and neurolgst rude and unhelpful.

x

[Hidden in reply to SueLovett]

Know what you mean Sue - he is rather lovely isn't he! At least your GP is kind - we have new GP leaflets now and will be getting them to APS patients soon - this way we can go armed with information. I don't want to be negative, but so many neurologists do not understand the effects that APS can have on all our bodies. I will ask Munther about you next week Kx

[SueLovett in reply to Hidden]

Very kind Kate,

Yes if Munther ever wants to retire from being a Hughes specialist he could set up training programmes for other doctors and teach them how to treat their patients with dignity and a caring attitude.

He also recognises that despite your brain having been turned into a semi vegative state you are still intellegent.

I am pretty unwell at the moment and have requested blood tests to be done. So will see.

Take care x

[Lure2]

Hi Monica,

I sent you a message the other day regarding your question above.

I can now read you are Lupus Anticoagulant like me and then it can be really difficult to keep the INR stable. But it is possible with several chequeups and to keep constancy in what you eat. You have had warfarin such a long time - 40 years. As I told you I selftest since more than one year.

I am worried about your low INR levels though when you search around for help. Try at least to find someone that can help you with the INR-levels so you can feel safe without clots and tromboses..

We all have to fight to get help. Perhaps you can take help from relatives or some friend.

Take good care and go on fighting. We over 65 must fight even more. GRR

Kerstin

[bluebutterfly101]

I will do that Kerstin. It is so good to know that there are people who care. Thank you Monica

[tim47]

It is so infuriating to read time and time again the problems accessing proper care.

If it helps, I am over 65 too and have been on warfarin for over 40 years (you are the first other person I have heard of who has been on it as long as I) . I was first put on it at The Radcliffe Infirmary before the JR really got going. In those days I had a consultant who took charge of everything, an exceptional doctor who became the top man in medicine there but who has now retired. It made such a difference having a trusted single consultant coordinating everything from all the consultants etc that we see, I really miss it but my GP is most helpful. I seem to recall government saying we older patients should have a consultant accepting overall responsibility but nothings seems to have done about it. I too have the LA and self-test but with a high and narrow target (3.8-4.0) set by Prof Hughes. I can quickly get back close to my target when it does its own thing. I also have fragmin (heparin) to resort to if it is too low.

Best wishes

Tim

[bluebutterfly101 in reply to tim47]

Hi Tim, same here you are the 1st person I have heard of too! I went on it at age 25 after the birth of my son (2nd child) when I had a PE. Because I had so many problems with more PEs and DVTs they said to stay on it for life. In between time I went to live in Africa for 10 years where it was difficult to always get my supply hence so many DBTs. When I came back in 2000 and I was so ill my GP at the time said with my history I should stay on it, but that was before I even knew I had APS?? I think half the time they just think if you are on something just keep with it rather than check and see if it was still needed. Obviously now with the APS etc I know I need a thinning agent but there may be something better for me.

Somebody else on here suggested I ask to be referred to John Radcliff, and as I did attend there years ago - in the 80s - hopefully I would be able to do that.

I spoke with the dr at Lupus Unit about using Heparin if I couldn't get the level up and he said definitely not. I also asked if I could change over from warfarin and he just said that as I had been on it all these years I should just stay on it - better the devil you know were his words I believe.

I am going to write to Prof Hughes again - it was him replying to a previous letter of mine to him that got me referred to the Lupus Unit in the first place and he did suggest this in his letter so I will see what he has to say. Just wish I could afford to see him at London Bridge but unfortunately being on a Pension that is topped up with Pension Credit does not allow for that type of 'luxury', so hopefully he will give me some advice in a letter that I can use to get what is correct for me.

Thank you for thoughts Tim and for sharing it really does help, Monica