In addition to your doctor/consultant do you... - Vasculitis UK
In addition to your doctor/consultant do you have a specialist nurse/care co-coordinator? Please leave any appropriate comments
Wow I didn't realise that everyone did not have one - mine is amazing - Sarah from QE - she did an article in Vasculitis UK newsletter a few months ago. I really feel for people who don't have one as I am not sure how I would have coped without her during diagnosis and treatment - she is even there outside of work hours to help and support - a true lifesaver.
My sister and I don't even have a rheumy . We share the same GP practice never get to see the same GP.one of the GP has taken an interest and does a lot of research on uv but we are very lucky to get an appointment to see her
Sarah from the QE had not been recruited into the team during my initial diagnosis and treatment and as a consequence I have only needed to see her on a few occasions. However I would agree she is excellent and a valuable member of the team.
My rheumy nurse Pauline has been very helpful. I used to see her every 6 weeks. Now I do call her if I need her help!
I don't have a specialist nurse. I think it would be a great advantage to have someone you can ring who has knowledge of vasculitis. Some one you can talk to,who can alleviate the worries and give advice. It's interesting to see that about a third have a nurse. Wonder what the ratio is for other chronic illnesses.
No one at my GP where they cheerfully admit that they know very little and that they expect me to be the expert. I can ring Stella at Addenbrookes if I'm concerned, but she can be quite difficult to get in touch with, especially (and for good reason) on clinic days.
I was never offered any kind of support and have had to guide myself through the the whole process.
No one.
No one.
The only support is my GP who on all honesty knows nothing about the disease (I have TAK). my consultant in John Radcliffe Hospital is very good but there us no one you can contact between appointments. When I went into hospital as an emergency in my area, none of the doctors knew anything about the disease and they had to keep ringing the hospital where my Consultant is based for help. Not very reassuring situation at all.
Have had no support or advice at all, not even an explanation of cerebral vasculitis from my consultant. Everything I know about my illness, I've had to research myself. Luckily, through my own GP not being available one day early on, I've found a very young, very new, doctor at the practice who is willing to learn with me. With mine being such a very rare condition and every case different, it probably isn't feasible to train up a nurse to offer support.
The Consultant now works without any other doctors...so our Specialist Nurse is more essential than ever. She has always been available for little queries, as well as being able to give informed advice and liaise when necessary. I couldn't have managed without her in the early days of treatment.
Until seeing the above (71.9% don't) I thought most people had a specialist nurse. I'm not sure what I would have done without mine. Stella (Addenbrookes) supported me a lot when I was first diagnoised and I think all specialist nurses play a really important role. Without Stella I am not sure how I would have coped initially.
Sounds like I am the luckiest, support wise. I'm in Jersey, my hugely experienced GP of 37 yrs ( Yes, & just retired aged 69) had never heard of Churg Strauss Syndrome.
I saw it highlighted on Sky Mystery Diseases & the similarities were remarkable tho initially I didn't seem to have enough permanent symptoms for a diagnosis. I do now..
A new Respiratory Consultant started here in Jan 14. He just so happens to be an authority on Churg & started treating me for it at once, & 2years on, I'm just out of hospital after my first v nasty eucinophil flare despite steroids & immune suppressants.(. Eucinophils 1950)
My Consultant is very experienced, authorative & most reassuring. I can see him at any clinic 3 times a week without appt if I have any worries, or I can phone his Sec & he will get back to me, altho he's mad busy & never seems to even take his holidays.
I am NOT a private patient) We have become firm friends too, and I feel I have found my Guardian Angel at a very frightening time. GOD BLESS HIM
I guess my care co-ordinator is me! I have never been offered such a service either at the hospital or by the gp. I try to see the same gp when I visit (not very often) and he is very aware of my condition and will quickly refer me on eg to a rheumatologist or an eye specialist: however he is not proactive in my care - that's down to me!
My GP happily admitted he knew nothing about vasculitis, so no nurse at his practice. Although having been told every time I go to the Lupus Clinic that I have vasculitis and have it written large over all letters etc, nobody has given any advice or help except to say, 'ring immediately if it flares'. A nurse to reassure and give advice would be wonderful.
Foss
I have a nominated health care assistant at my surgery who takes all my bloods & rings me regularly to see how I am. She takes notes of my progress re pred dose (reducing V slowly), weight loss, all other conditions =(mainly Pred side effects) & liaises with my nominated GP.
Never been asked if I needed one
I was given the name of a nurse and telephone number hvae used a couple of times
My nurse is always there at the end of the phone if i need her. excellent service
I go to QE in Birmingham and Sarah the specialist nurse is wonderful. Judging by the poll results I feel very lucky. She is an excellent addition to the team of consultants and doctors at the clinic, always available for F A Q,s and to spot problems you don't even realise you have.
No nurse specialist feel like alone in it all as only see consultant every three to four months think it's better if you have ms
I was told years ago that one would be appointed. That was the last I heard. Must admit though that I'm a bit fed up of standard appointments etc, etc, i'd be quite happy to sort myself out when I feel I need help?
I was not even sent to see the rheumatology doc until 6 years of positive ANCA. Was to,d it was all Ulcerative colitis related. Now, I am seeing people but no definitive diagnosis but a general one of small cell ANCA positive vasculitis. Am awaiting referral to Addenbrookes as I write
I've pretty much been on my own from the start and had to do a lot of my own research. I don't think I would have coped if it wasn't for Vasculitis UK as they put me in touch with the Hammersmith and I eventually saw Prof Mason 3 1/2 months after being diagnosed.
I am under so many different doctors locally though but none of them really know enough about the disease and I don't know what I'm meant to do if something happens other than to try and contact the doctor that I usually see. He's been really good but a lot of his answers are "I don't know." What makes it worse is that he is leaving in August so now I have to put trust in somebody else..
I have only seen lupus nurse for first time as I was in pain with my ankle and only able to take. vparecetomol so rang and asked for advice, I cannot take anti inflamatorries as have aps and cannot tolerate codiene I did get an appointment but was almost three weeks later! I Struggled in pain still went to work, foolishly and broke the golden rule of resting, although the pain has almost gone and I'm awaiting ultra sound report.
My nurse was very thorough, told me stuff about my lupus, but would like a copy which I'll ask about if I see her again, it's about a factor I have or not I Think it was 8? Etc
. Its first time in all these years I was able see her and never knew I could, brilliant , thank you.
I wasn't really sure how to answer this- I said yes, but....
My Rheumatologist "leads" my treatment plan, she has a supporting nurse who helps look after me. My healthcare team includes my GP, who helps manage the regular stuff, monitor the glucose and blood pressure issues from the Prednisone etc. Also, my pulmonologist, since I had been seeing him for 10 years for the asthma stuff. I have an opthamologist consult, since I am having ongoing issues with the eyes since diagnosis. I no longer see the hematologist, since they have ruled out leukemia and other blood disorders.
They all have access to my blood work and results, but my rheum consult is the only one who tunes my treatment meds. I have good immediate access to help if I have problems, but no one educated me very much about the disease, I did that mostly on my own. Even my rheumy has only even seen one case, and I will be the first she has managed and treated.
