Guys - frustration

Just on my way back from having my annual check up at Guys - was seen 1.5 hours after appt time and was with consultant for under 10 mins. Whilst symptoms have been more stable over last year which I suspect is due to change of circumstances and less stress I still experience pins & needles/dead hands most nights and sometimes in feet. Also joints in hands and feet randomly feeling inflamed - consultant said this is not related to APS along with every other symptom I have ever described. First he said could be carpel Tunnel but was tested for this before and it was negative. When pushed he said it may be B12 deficiency (which have prev had) and agreed to do blood test.

Whilst I don't want any medication I don't need I feel I am being brushed off. He said I could either referred back to gp or he would see me again in 12 months. Has anyone else experienced this at Guys.

28 Replies

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  • Not at Guys, no, but the rest is sadly familiar.....

  • Yes totally, experienced your symptoms as well. Prof Hunt moved me back from Guys to St Thonas's, as the wait for horendous and then shoved in & out!

    I too have B12 defiency which I take meds for, I now have thoratic outlet syndrome, which also causes pins & needles.

    Glad your under less stress. Wait & see result of blood test, then if not B12 tgen persue.

  • Feeling as if you are not believed, or not taken seriously, is all too common. Even though the Registrars have many patients to see, this does not justify feeling dismissed. You saw the Consultant - which rheumatology consultant?

    Do you also have a diagnosis of SLE? When you say your joints feel inflamed, are they swollen?

    I don't understand - to see your GP OR see him 12 months later?

    We see the GP in between appointments because we cannot get an appointment with the consultant due to the NHS. Patients should be seen every 3-4 months. The fact that appointments are 12-18 months is not the fault of the patient!

    If you have a good GP - and you are worried and/or in pain etc your GP could contact your consultant over the phone. My GP used to try at St Thomas' - mostly without success, but perhaps Guys is better?

    My only other suggestion is that if you ar unwell to try and get a private appointment at the London Bridge Hospital. Frankly, this should not have to happen and every NHS patient should b attended to "as if" they are a private patient. Certainly, whether I saw Prof Hughes under the NHS or privately, his attention was always the same.

    I am truly sorry.

    With good wishes,

    Ros

  • I am under Dr Sana nice chap but doesn't seem to think APS has any symptoms unless you have been unfortunate to have stroke or clot.

    My appointment is to see him again in 12 months although he was happy not to see me again. I have recently moved area so need to change GP practice. Although my symptoms are not as frequent as they were 12 months ago I want to stay under a specialist - if a really bad flare up again I request a second opinion.

  • Ps no diagnosis for SLE but father has very bad rheumatoid arthritis and mother has thyroid probs - so far I have not tested positive for either but don't think there is a conclusive test for RA.

  • If you have a history of autoimmunity in the family, this needs to be taken seriously. Your family history shows there is such a case.

    There is no definitive blood test for SLE (the lupus anticoagulant is a complicated blood test for APS/Hughes). In RA, they can test you for the RA factor and if this is elevated, there should be some consideration of a diagnosis, especially if you have a degeneration in your joints. This is rare in SLE, although swelling and pain is common, deformity is not.

    There are doctors who are rigid about blood tests and whether the patient has 4/11 for SLE. In the case of the latter, this was a classification for clinical trials and not for individual diagnosis. Unfortunately, doctors insist on using this classification which leads to confusion and under diagnosis.

    If a patient presents with a malar rash, lupus nephritis and a positive ANA, you don't need to be a lupus specialist. Most patients do not and even with Dr Hughes, it took 18 months before he would diagnose me! There are lupus variant conditions and therefore, a good lupus specialist will "watch-and-wait" because giving a wrong diagnosis will damage the doctor-patient relationship. This doesn't mean you should not be treated! I was certainly treated with medication "as-if" there was a formal diagnosis.

    The problem with APS/Hughes, as with other conditions, is that blood tests can and do change. A formal diagnosis results from a successive positive blood tests over a period of time. Eventually I had these positive blood tests, but I was prescribed baby aspirin and I always knew when I had a problem. I couldn't remember how to write a cheque or switch on a computer; and the headaches/migraine etc etc. Observations from the patient should be taken seriously.

    If you have symptoms, you need to stress to Dr Sana that you would prefer not to have a clot, TIA or a stroke? Are you taking any medication eg baby aspirin?

    With good wishes,

    Ros

  • Hi NicBay,

    How did it go with the testing for Sjögrens? Right eye better and also numbness in face?

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin

    I am wracking my brain to try and remember if Dr Sana did agree to test me this now? I was told by optician it was dry eye syndrome that caused my retina to be jagged and recommended I use fake tears which helped calm it down.

    Regards

    Nicola

  • There seems to be a continual moving on of patients at the moment it is not good, make sure you fight to stay there. MaryF

  • Your post sounds familiar and whilst I won't belittle your 1.5 hour wait, mine was 3 hours by the time I got out and all I got when I eventually got through the door was "Sorry for the wait" .

    Those appointments are supposed to be for 20-30 minutes, so they can properly assess you, especially if it's an annual or 18 month appointment. I can't think what they could possibly do in less than 10 minutes so it deserves a complaint. I'd also ask you to comment on our poll, as the more that do so the better the results.

    The real reason this happens is because of the system they have there, which is most bizarre. Instead of just having a patient list for the day and sticking to it so that appointments stay on time, the Consultants seem to consult each other during the clinic and if necessary see each others patients. This just knocks those who have an appointment further and further back and is very unfair.

    I can't think of anywhere else that does this. I also can't work out why. The appointments are supposed to be booked with the consultant whose name is on the referral from your GP. I know that when people are notified they have been referred and then call to get an appointment, they are often advised that the named consultant has a long wait of many months and then offered an alternative choice. Perhaps this is a way of getting waiting lists down at the expense of exsisting patients. Also new patients mean larger payments for the Hospital against existing patients who don't pay nearly as much money per appointment. I suggest perhaps its why they are keen to discharge so that if you are re-referred back, they get paid more!!

    Personally I'm giving up on Guys, I think it's a waste of time for the attention and care you get and I don't actually feel you will necessarily get the best advise. This makes it a lottery on who you see as you get personal opinions rather than making everyone sing from the same song sheet! I feel so sorry for people who wait months and months and then gets someone who does not believe in seronegative APS for instance and then discharges them home without a diagnosis or treatment. Its not the centre of excellence it once was sadly.

  • Totally agree even though I think my consultant trained under Prof Hughes he seems to have a very different view if APS and doesn't seem to think it has any associated symptoms.

  • Hi Nicola,

    I know you were on Aspirin some time ago and you also had numbness in your face. If you have got symptoms (your have a family-history of autoimmun illnesses) you should not have to wait till you get a stroke before you get better anticoagulation.

    I hope you still have baby-Aspirin and that eye-issues and numbness and other neurological symptoms disappeared with the Aspirin.

    Kerstin

  • Yes still on aspirin which I think together with less stressful lifestyle has helped calm some of the symptoms but would be good to know cause of pins and needles in hands and inflamed joints. Off traveling round Southern Europe for 5 months shortly so will see how I feel when I return and request further investigation if necessary.

  • perhaps ask your GP to do the simple test for TOS. Its normally to get you to raise arms and see if you lose your pulse. If that happens you can be sent for further evaluation to find the cause which may only be a course of physio.

    Id also get B12 checked again as that sounds very familiar and is easy to fix.

  • They did B12 test at the clinic yesterday after I asked consultant for it as have been B12 deficient in the past. What does TOS stand for?

  • Thoracic Outlet Syndrome. I have this problem but not established the cause yet.

  • Looks like I "might possibly have this" also. The pulse test was negative. I'm very slight in upper body build from a anatomical stand point, and do not fit the " typical profile" they normally see. But I am now forming superficial clots in good arm in Brachial. No pins and needles sensation. I think next step is contrast MRI? I don't think I have this but it keeps coming up.

  • I had a stand up row with this same consultant when I saw him privately at London Bridge. I won't go into details on an open forum, I'd just say I will never see him again!!

    Thankfully I now have an excellent doctor looking after me at St Thomas who I really like. I hope you get the treatment you need x

  • I was beginning to think it was just my imagination- is it ok to pm you?

  • Yes, send a pm definitely x

  • I'm so sorry to hear this. I keep telling my doctors here to "look to London for excellence" and refer to these hospitals. I don't know what else to do!

  • I agree with Ab Fab. It was the beginning of the end when the management moved the department from St. T''s to Guys not to mention the departure of Munther Khamashta. If he ever comes back to London Bridge I will be first in line. I am not unhappy with doctor I see at Guys he is lovely & knowledgeable but the experience of going there is grim.

  • I think that by blending it into rheumatology and running clinics the same way as they did/do, it has automatically downgraded the level of service (if thats the right word) that you get.

    In most centres of excellence they have all the consultants on all specialties associated with the disease, so you can be seen by anyone on the same day whilst you are there rather than have to come back or wait to see them. For instance at the Royal London for Bechets, they have a multi-disciplinary team that consists of Consultants in Oral Medicine, Immunology, Ophthalmology, Rheumatology, Neurology as well as a Psychologist, and dedicated Behcet’s nurses. You get seen by the clinical lead and when I went there my appointment was on time and I didnt have to wait too long when being sent round to see the other Drs or have tests done. They have three centres like that and I fail to understand why a disease such as ours, together with Lupus, cant have the same set up. It seems that once it moved to Guys and with Hemo at St Thomas, the whole thing just crumbled apart.

    I guess the bottom line is money and that will dictate the standards of care plus the Drs that they have too.

  • Try flying in from Texas... yep. That happened. Could be worse. With an INR of 1.8 ( pity party over here!) It was terrible! Why would I torture my self like this? Well, it was either go to the London Lupus center or see our Local ranch vet for the cattle!

  • I can only comment on my own experience which is extremely positive of both hospitals. Ive been well looked after for over 5 years by the haematology and neurology departments who co-ordinate appointments for the same day to ensure I'm not having to travel just for one appointment. I go every 10-12 weeks

    Take care

    Lynzy

  • Hi Lynzy

    Thank you so much for taking the time to comment. We really want to hear a balanced view rather than just have the people who talk about having a difficult time. Its always important to hear the other side if there is one.

    Perhaps you could spare a few minutes to vote on the poll as we are lacking in comments that are positive.

    Thank you.

  • Hi can you remind us where to find the poll please?

  • Hi Nicola,

    I am not the best person to do this, but here we go....

    The home-site at the "bar" under "Sticky Blood-Hughes Syndrome" (might be red bloodcells?)

    Home Posts Polls Folowers About Admin.

    Press the "Polls". Could you understand my English/Swedish?

    Kerstin

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