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Rheumatology Appointment

11 posts in this topic

I had my follow up appointment with Rheumatology last week and boy am I disappointed! I got a Registrar who really didn't seem to know anything about my Scleroderma and other conditions. I was going to find out the results of my Pulmonary Function Test and other tests, and he couldn't find my results!

 

I have been having a terrible time with breathing and that was the main reason they had me back, to see if the steroids were helping. I told him no they weren't and asked about some other problems I had recently started having, like frequent urination, I have to go every hour to hour and half like clock work, I'm not getting any sleep at night and I can go nowhere as I have to go to the bathroom. It isnt a bladder infection as I had this checked by my general practitioner. I was told well it is because I am a woman and these things just happen! I was shocked and more than a little angry. I asked about the pain I am having in my shins, knees and feet and he didn't have any idea why I would have them, probably just something to do with the Scleroderma. Usually after the Registrar sees me one of my Consultants come in to talk to me, but they weren't there this time.

 

It was a complete waste of my time, and with the breathing he just said he would send a letter to my general practitioner when he found the results, hopefully I am still breathing by then! And I know already my general practitioner won't treat me for anything related to the Scleroderma, and if the test comes back okay, then I would like to know why I am having such a hard time breathing!

 

It is sooo frustrating, you wait three months to see someone as it is and when you get there you get some person on a rotation that knows nothing about the condition. I go to a Sclero specialitst because I want to see someone that knows what they are talking about. Sigh sorry for the vent just so angry at the moment, as I know even though I asked for another appointment it will be a good three months before I see anyone.

 

Cheers

Jean

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Hi Jean,

 

Oh dear, what a shame. It doesn't sound like any of your problems are being addressed very well. About all I can say is persevere, don't give up, and be a really squeaky wheel. This sort of thing is unfortunately all too common in scleroderma world. I kind of think of people like your registrar as the ants, earwigs, and silverfish in our house. As for the "you are a woman and these things happen" doctor? Cockroach!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Jean,

 

I am sorry to hear that you've had such a disappointing Rheumatology appointment and it doesn't sound as if your registrar had much of a clue. :(

 

I agree with Jeannie in that you'll probably have to be very persistant and sadly perhaps have to make a bit of a nuisance of yourself to get the result you want. With my local consultant appointments I was fortunate in that the consultant's secretary contacted me to tell me that she would be away at the time of my appointment and did I wish to see a registrar instead? Like you, I felt it would be a waste of my time, the registrar's time and cost the NHS money, so I suggested we leave it until I could see the consultant herself. However, I do go to The Royal Brompton on a regular basis so it's not quite so vital that I see a local consultant and the registrars there, thankfully, know as much, if not more, about lung conditions than the local consultant does.

 

I can see how very frustrating it is for you and I'm so sorry. Maybe if your lung function tests show that there is a problem with your breathing your general practitioner could refer you to a lung specialist? Just a thought!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Oh Jean, what a letdown for you;. I am TOTALLY on board with Jeannie's stance on this front. Pull that "bulldozer outfit" out of your wardrobe, dust it off and go get 'em, Jean!

 

This just isn't acceptable! You deserve much more than this. I'm thinking, either your doctor was on holiday, or was overbooked; whatever the reason, we must be our own advocates and stay on their heels until they address the isssues at hand, to our satisfaction.

 

In the meantime, my heart truly goes out ot you and I can empathize with you; Sending HUGE :emoticon-hug: s to help ease the frustration a bit.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks everyone, I have been trying to get through to my Consultant's secretary but no answer today. I will keep trying, I have called the Nurse helpline as she has been able to get me appointments in the past. I will be pushy, but thanks for listening

 

Jean

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Hello Jean

 

It's worth bearing in mind that it was your rheumatology appointment for you to get what you could from it. If I were told that my records/results couldn't be found I would have immediately initiated a complaint. It's at times like these when we have to be assertive. Before you speak to the secretary know exactly what you want and consider contacting the PALS (Patient Advice Liaison Service) departments at the hospital and make a complaint quick sharp. Ma had a bungled appointment involving no records and contacted PALS, she has since had 3 appointments in quick succession and PALS did all the work for her.

 

There can be so many reasons for having to pee, being a woman ain't one of them! Persevere with your general practitioner about this complaint because relief can be found. I have interstitial cystitis, a small, thickened bladder, a narrowed urethra and chronic constipation from scleroderma which can contribute to the "need to pee" by causing pressure on the bladder and/or urethra. A couple of nights ago I had to pee every 20 minutes for hours, don't know what caused it but boy was I glad it went, then again, for me this is par for the course!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks Amanda, I didn't think about contacting PALS, I will go online and see if there is a way to do it there if not I will ring on Monday and get things started. I am trying to do a fall clean at the moment and having to stop every ten minutes because I feel like I have run a marathon and am going to pass out due to lack of oxygen. So something is definitely not right! I will persevere and be pushy and I appreciate all the support. Makes me think of things I should of thought of in the first place. My problem is I get angry and then I don't say anything because I am afraid what will come out, it comes from when I was a kid and got in trouble for speaking out when mad. You would think at 47 I would be over that by now!

 

Cheers,

 

Jean

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Hello Jean

 

Oh you lovely lady! The fact that you are aware you get angry means your filters are in place and you are unlikely to just let rip. It's okay to let people know you're angry, you have a right to be, because you are aware of others you can use it to propel you forward.

 

Last year I couldn't have a conversation without getting out of breath, I remember how debilitating SOB (shortness of breath) can be. I still have it now but it's vastly improved on last year. It was like moving around in a swimming pool, everything was such an effort so let me encourage you to NOT overdo it. Even if you don't yet know the cause of the SOB it is still there and you can't make it go away by trying to work through it.

 

Please let us know how you get on with PALS because they are there for the patient and that's you.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jean

 

I do hope that you get some proper answers soon from the Rheumatologist, it is so difficult and frustrating when they do not listen to you. My own rheumatologist left just over 12 months ago and has still not been replaced apart from a locum consultant. I saw one in June and was told this doctor was the replacement but when I went last Friday it was the locum I'd seen last November who had done nothing and is not easy to talk to. It gets me down because there is no continuity and you end up trying to tell each person again from scratch and that isn't easy when there's so much to tell.

 

Take care and push for some answers.

 

Buttons

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Thanks Amanda, I did get a result, I spoke with the connective tissue helpline nurse and she is getting me a rush appointment with the Sclero doctor. As she was surprised that they didn't make an effort to get the results, as that was the sole purpose of the appointment. So will just wait to get the appointment through the post.

 

I am going to see the woman I saw the time before this time. I can't remember her name but she was very good with Sclero problems and usually one of the Consultants comes in at the end of the appointment to talk to me before I go. But I was told I can ask to see a specific doctor when you get your appointment, so I am going to do this for any future appointments. This is the second time I had someone who didn't have a clue, and it is very frustrating and frankly a waste of our time. I understand the registrars need to learn but if you don't get the back up from the Consultant and they don't know what to do with your problems what's the point?!

 

I have put a complaint in to PALS about the appointment as well as the fact that the results were not sent to my doctor in a timely manner; three weeks should of been plenty of time for those results to get to them. The Echo I had was the day before the appointment and they had the results of it.

 

Thanks again for everyone's kind comments and suggestions. Hopefully my breathing problems will be resolved soon!

 

Cheers

Jean

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