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What's the point


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#1 jaxs

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Posted 20 April 2009 - 10:36 AM

I went to see the specialist at hospital on Thursday last week. I feel it was a total waste of time. First of all I had to get the public transport as my car needs a new clutch. It took me 5 hours to and from hospital. It was so cold and I felt ill when I finally got home.

Seeing the doctor she asked how I was. I started to explain about how I'd been in bed for months feeling ill and unable to do things even simple things. My Raynaud's is getting worse and now after an attack my fingers are turning black and very painful. I have a swollen ankle which is very sore and sometimes can't put pressure on to it ,and my left wrist is so sore and any pressure feels like it will break but my right hand is shrinking ;) and my lips have shrunk a lot in just weeks. I'm in a lot of pain at times, in my legs and even chest pain ,and my breathing is worse.

All the time I was saying this she was on her computer and writing at the same time. I felt she wasn't listening. It was 4 in the afternoon so maybe she just wanted to get home. I felt I was in the way, even my daughter was shocked at the way the doctor was. She told me to come back in 6 months time. I walked out that room feeling very disappointed. I'm on medications for reflux and nothing else. I feel so let down and feel because it's my body, my health, my life she should be helping more. Am I making a big deal or was she missing the point?

I've only got one life and wish to live it the best I can.

Hugs,

jaxsxxxxx
live life for today and not for tomorrow

#2 Amanda Thorpe

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Posted 20 April 2009 - 12:57 PM

Hello Jacks

The one missing the point is the doctor. Whether or not there is something they can do for you they should at least communicate with you. You understandably feel let down and disappointed particulalry as you had no answers or help with symptoms other than reflux.

Before you tackle the doctor's issue take a few moments to remind yourself:

you are living with a complex disease
you are trying to live your life regardless
you are unique and special
you matter and how you feel matters
you are able to take a negative encounter and make it work for you...

How do I know that? I know that because sclerosis is one long negative experience and yet we who have scleroderma make the best of it that we can. Remember you are a part of a group of people for whom everyday is an achievement!

Now to the doctor, she needs your help to improve her bedside manner. Are you able to make contact with her via telephone, letter or another appointment asap NOT in 6 months? She may be blissfully unaware of how you feel as a result of seeing her and may be of the opinion that she's done what she can. I don't know if she's a sclero expert or if it's possible to see a new doctor which you might find easier.

Either way you want some satisfaction to conclude this matter and I hope you are able to get it.

Take care.

Amanda
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#3 jillatk

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Posted 20 April 2009 - 02:01 PM

Jaxs,

My vote is you fire that doctor and get a new one who will listen to you and treat you like the respectable person you are. Don't accept awful service. You are the consumer. You get to choose. Look at the specialist section and find another doctor in your area and make an appointment asap!

Sorry to hear you are feeling so poorly. It certainly does not help to get brushed off like that. Take a deep breath and go at it again until you get your needs met.

Jill

#4 Shelley Ensz

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Posted 20 April 2009 - 02:16 PM

Hi Jaxs,

I'm sorry your specialist appointment was so disappointing.

Are you also seeing a primary care doctor in the meantime and are they helpful at all? I try to get the vast majority of my care from my internist rather than specialists. For one they are likely to look at my whole health picture and not only the rheumatic diseases part. For another, I can get all my symptoms attended to right away without having to save them up for a specialist appointment. Plus they can adequately document my symptoms and the resulting medical records I can copy and take with me to specialists as needed.

I'm worried you might be saving up your symptoms hoping the specialist will pay attention to them whereas they might be expecting your primary care doctor to be tending to your daily and overall needs for care.

Also the specialist sounds inadequate for you. I think you should replace them if possible but also look to develop a closer relationship with your primary care doctor if need be.

But rest assured we all understand and have been there, done that.
Warm Hugs,

Shelley Ensz
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#5 janey

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Posted 20 April 2009 - 03:18 PM

Dear Jax,
I'm so sorry you had such a disappointing visit. Until recently I had never had a doctor sit at the computer and type while I was talking. I had never realized how impersonal it is! Next time I'll take a written list and hand it her. I do that with my rheumatologist and it works great.

What's hard to believe is that she said to come back in 6 months after "listening" to you symptoms. That's unbelievable. So yes - please look for another rheumatologist and in the meantime, stay very close to your primary care physician. Make sure that your primary care physician knows how you visit went with the specialist.

Keep looking for a doctor that listens. There are some out there, we just need to hang in there until we find them.

Big Hugs to you Darlin',
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#6 Shelley Ensz

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Posted 20 April 2009 - 03:32 PM

Hi Jaxs,

Janey picked up on an important thing that I had overlooked. As it happens, nearly all my doctors now need to input medical records during the office visit, so I am very accustomed to the doctor looking at the computer monitor rather than at me for most of the visit.

If this is your first encounter with "computer visits" it can be quite off-putting and the doctor may not be accustomed yet to handling both the new computer demands as well as the patient encounter.

If you request the medical records you might be surprised on how much the doctor noticed and documented for you. Or then again maybe they were typing out their grocery list, you never know. :blink:

Also I find doctors most receptive when I come with a short list of things to be grappled with in a single appointment and they especially appreciate quick summaries which allow them more time to do doctoring if in fact that's something they are inclined to do.

I read once that most doctors allow the patient to talk for 20 seconds before they cut them off. That means we have 20 seconds flat to capture their attention, state the problem and explain what sort of help we want. Yowsers, huh?
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#7 Penny

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Posted 20 April 2009 - 05:43 PM

Jaxs,

First and foremost...

{{{{{warm gentle secure HUGS}}}}}

I know how it feels to go to a doctor and have it feel like they are "hazing" out while I am trying to explain how I am feeling and what is going on. I would leave wondering if they just zoned out and were actually thinking about what they were planning to make for dinner while I was there.

In the car I would look at my husband and say something along the lines of "did it seem to you like the doctor was listening to me at all?" and he would hem and haw, not wanting to upset, me then say "no".

Now, when I go to see a doctor I take with me a copy of everything that has happened since last seeing them (or, in the event of a first appointment, a synopsis of everything leading to me seeing them) including copies of tests results and a clear timeline of my symptoms in detail. I also bring a copy for them of my allergies and a list of what medications I am taking for their records and why I am taking them. I started taking a typed copy of my medications and why I am taking them? It's because I once peeked at the computer screen at the office and saw that they listed my OTC antacids as medication for blood pressure! So the doctor would take a quick glance at the screen see I was on BP meds and think that I was lying when I said I could not take any medications and keep them down since the records show I am taking BP medications.

Perhaps you can write the doctor and explain to her that you left the office with more questions than answers and that you are physically and mentally uncomfortable and need some reassurance that you are getting the proper care. To just be told to return in 6 months with no direction leaves you in a lurch and doubting yourself and your treatment.

Doctors are people too, and sometimes they tune out when someone is talking and hear only white noise and it might be a gentle reminder to her that you need to be heard.

If you get no response from the letter than I would suggest seeking a new specialist.

The most important thing for you to do right now, though, is to not doubt yourself.

#8 jefa

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Posted 20 April 2009 - 07:30 PM

Hi, Jaxs.

This all sounds very frustrating. Since I have talked to you in chat sessions before, I know that you are from the UK, so some of the otherwise excellent advice you have received may not necessarily apply. For those who are not familiar with the NHS (National Health Service) protocols, I will explain briefly.

Each of us signs on with a General Practitioner (GP) who oversees our general health needs. In smaller areas there may only be one or two doctors, in larger areas as mine, there may be several clusters made up of doctors and nurses in a health center which also houses some specialist services -- mine has x-ray services, a psychologist, hearing testing etc. When certain clinical criteria are met, the general practitioner will refer a patient to a specialist clinic, most of which are located in nearby teaching hospitals. It may take several months to be seen the first time, but once you are are signed on with that clinic, you continue to be seen routinely for the duration of your illness by the consultants at that clinic. You might be seen more frequently at first, then quarterly or even twice yearly. During that time, your specialist/consultant, corresponds regularly with your general practitioner who in most cases does all of the prescribing of medications. Blood tests specific to the specialty are done by the consultant's staff, other tests may be done by the general practitioner. All results are sent to the general practitioner.

At the moment I am seeing my general practitioner every 8 weeks (or in between if required) and my rheumatologist every 4 months. I am also currently being seen at a Gastrology and Dermatology Clinic. While you may be able to change from one consultant to another within a clinic, you do not have many options when it comes to available clinics. All clinics are held to the same standard of care as defined by NICE (National Institute for Clinical Excellence). There are channels through which you can report complaints of negligence through the NHS itself.

It is true that all clinics are converting over to computer records. My own General Practitioner has his monitor turned so I can see it and he pulls up copies of letters from the consultants, blood test results, etc. All the medications are on the computer and he might refer to it several times in the course of a visit.

While it is not so easy to 'fire' a doctor and we don't have the option of self-referral, it is still necessary at times to stand up and be counted. I have found the most effective way to get through is to go in armed with written questions or bullet points and insist they get covered. They are not mind readers. I have written letters a few times in the last ten years. I address the letter to the head of the clinic involved and cc: my general practitioner and my patient file at each relevant clinic. They have been effective.

You can search for NICE guidelines on specific illnesses and find out precisely what treatment plan is considered the standard of care to make sure you are receiving the appropriate treatment for your circumstances.

I hope some of this may be useful to you, jaxs. Let me know if I can help.
Warm wishes,
Jefa

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#9 Penny

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Posted 20 April 2009 - 08:27 PM

Jefa,

Thank you for explaining about the process through the NICE standards, and Jaxs, I apologize that the suggestions that I gave to find a different specialist probably do not apply in your situation.

As Jefa stated, taking a list in with you in writing, one copy for you and one for them, might help when you want to go over specific issues and help to make sure that they are discussed and listened to fully.

Perhaps you can take a leaf from Jefa's book and write a letter to the head of the clinic cc: your primary physician discussing your concerns.

Just know that we are all behind you and will help in any way we can, personally, I will get more information about NICE so that I can better understand the guidelines.

#10 jaxs

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Posted 21 April 2009 - 02:06 AM

The specialist is studying scleroderma and is one of the best in the hospital I go to. She has always been okay with me and maybe because she had clinic all day I was one of the last and she just wanted to get home, as we all did. But in the past she recommended I put in for DLA (Disability Living Allowance) which I did and was refused so it went to appeal. At the end of the appeal time it was still on her desk and she was away to Amsterdam on holiday. So it looks like her secretary wrote a short message saying I had no lung involvement, as I had to keep phoning asking for them to fill in the form. As you only have a short time to appeal, I have a letter from another doctor stating I do have lung involvement, so I thought maybe she was right because it was a few years ago when I was first diagnosed.

I hate complaining and feel a moaner if I say anything. I find it difficult to deal with at times as well as looking after my 14 year old son who is on medication and special needs. At times, I do think scleroderma takes over my life and stops me doing the things I used to. Even though I'm a fighter it gets the best of me at times. Oh well, maybe writing a letter will help. And thanks for all the suggestions and thanks for your kind words and taking time to read.

Warm (((((hugs))))))

jaxsxx
live life for today and not for tomorrow

#11 debonair susie

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Posted 21 April 2009 - 04:33 AM

Hi jaxs,

I can really appreciate where you are in your illness. I also have great empathy for you, in regard to trying to get as much into an appointment as you possibly can, with an account of all that is giving you trouble.

I think the idea of a letter to this hospitalist is an excellent idea! When you send it, also 'carbon copy' to any other parties of interest, which may be an added incentive for said doctor to respond to your concerns.

I've had doctors take notes while I am talking, but I have also had doctors at the computer inputting at the visit, too. I agree, in that it can be very offputting, yet it could be that it is also the most expeditious in getting the information into the system. Even so, a patient wants to feel acknowledged and that they are being heard, as you so eloquently stated.

By the way, I had a dermatologist appoinment recently. The nurse came in with the doctor, sat down at the computer and typed while the doctor gave me her full attention. It was great, in that there was flow of the conversation and the doctor and I were able to accomplish a lot!

Now, that's my idea of the perfect doctor visit! I do realize that some doctors/facilities must do what they must do, in order to accommodate all patients with the staff available. However, I also know that it works in everyone's best interests for administrations to find what helps make their facility most functional. Our hospital(s)/clinic(s) are always sending out surveys to the patients to find out how they can become a more quality facility.

I must also point out that I live in a small city of 100,000, give or take and it is a medical hub for several outlying towns from all over our state, as well as at least two other states. I also realize that I am fortunate I live where I do, in that we are less populated and waits for appointments are not too bad.

At any rate, that doesn't excuse doctors when quality care is lacking.

Please, let us know how things go, jaxs.
Special Hugs,

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#12 Jeannie McClelland

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Posted 21 April 2009 - 05:26 AM

Hey Jakx,

I'm really sorry you had such a lousy appointment.

I can't add much to what the others have already said, but I thought I'd tell you about my special technique in such situations. I just sit there, in my chair, looking like I'm never going to move and smile sweetly at the doctor until I do get my questions answered. I make absolutely no "well, I guess that's it, I'm off" gestures. I don't pick up my handbag (well, knitting bag in my case). I always have a pen and pad to make notes and I make sure I've got that poised at attention look, ready to take down words of wisdom. The doctor is left with the burden of ending the appointment and when he comes up with the standard line of "Do you have any other concerns?" or something similar, I again smile widely and say "Yes, I do. We haven't addressed how you plan on treating my very severe Raynaud's." The ball is your court now, buddy, let's see how you are going to evade that one.

Jakx, I might have an unfair advantage in that I'm amply endowed and it's easy for me to look like I'm never going to get out of the chair. If you need it, I'd be more than happy to try and send you a couple of stone of adipose tissue! :lol:

And to answer your question, the point is we all care about you and want to see you get the best possible care.

Big hugs, Honey.
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#13 jillatk

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Posted 21 April 2009 - 07:22 AM

Jaxs,
Not to be a broken record because you have received great feedback from others who have been at this longer than I, but just stand firm on the knowledge that your symptoms are real and you are not crazy, you are not an inconvenience or a burden. You are a perfectly good human being who deserves compassionate, competent care. If you don't get it is not because you don't deserve it or are not worthy of it. I think Jeannie has a great suggestion - don't move until you feel like you have been heard. I have on occasion told a doctor "I feel like we are not on the same page, let me clarify" or something along those lines. It is hard to be assertive when you feel like you are being dismissed, but it is the best thing you can do for yourself.

Take good care and know you have a grip of folks backing you up.

Jill