Speaking to junior doctors.

[BB4ALL]

I recently was asked by my Doctor if I would be willing to give some junior doctors a chat regarding COPD and agreed to do so. My doc told me before going into the meeting that I wasn't to give too much information to them but to let them ask questions from me. There were seven 2nd and 3rd year students in the room who all introduced themselves to me as I did to them. I noticed as the Dr asked me to give them a brief history of the disease that he was taking notes of what I was saying and he told them that they should also be doing the same which they did. After questions from them the Dr asked if it would be ok to take me to his room where these students could sound my chest and ask for relevant information as they did so. After another few questions the Dr and students thanked me for the assistance and I left. Later that evening the Dr called me to thank me for giving the chat and personally thanked me for the information I had given to them and told me that he had no idea of what this disease could be like and had taken everything I'd told him in. He didn't realise that carrying a bag of groceries had any effect, or that walking up stairs at home can affect your breathing. So people even though your Dr gives you a repeat prescription every couple of months or whatever it isn't necessarily the case that they fully understand what we the patients go through so lets try to educate them to be able to assist others who inevitably will come to them when diagnosed.

[Hidden]

Out of interest BB4ALL was this in United Kingdom of elsewhere..thanks Ger

[BB4ALL in reply to Hidden]

It was here in Edinburgh

[sassy59]

Very interesting and we should remember that Doctors are learning all the time too. They certainly need educating regarding the causes of COPD and other chronic lung disease. Xxxxx

[BB4ALL in reply to sassy59]

Very true Sassy and I wish you nothing but the best for the future.

[wheezyof]

Your experience proves a point I've been trying to explain to my consultant at the local hospital.

He sees me when I've been sitting in the waiting room, warm and rested, he looks at my oxygen level and is happy (normally 93/94). He asks if I need my wheeled walker/chair for balance, (I've told him at least 3 times, I need to rest frequently because of the pain, breathlessness. Without it I can't carry shopping, even my hand bag seems to weigh a ton.)

He seems surprised when I say stairs are my Nemesis, that gentle slopes feel like mountains.

He quotes how far I walked at pulmonary rehab. (A few years ago, only had bronchiectasis then now I have bronchiolitis obliterans too}. That test was in a warm room, around two chairs, so easy to sit if needed, not carrying anything and on a flat floor. Hardly a reflection of real life.

I've never been tested for oxygen levels when I'm moving around.

When I questioned that I was told "We can tell what you are like when active from the results we get when you are sitting"

My point is the tests they use and their lack of listening (I know they are very busy/overworked) means that most doctors don't really know us or our illnesses very well.

I'm sure they would know more and our treatment would be more efficient if we were tested doing everyday activities instead of sitting still.

[BB4ALL in reply to wheezyof]

Yes you're right, walking on level ground, heart rate and oxygen level returning to normal within the 2 minute time period. Those conditions are not the same as outside with uneven pavements, and only a slight rise in ground from home to the top of the street, some days I can walk ok other days I have to stop two or three times just walking round the block. If it were the same every day I could handle that but when its a day or two its fine then its bad for two or three days is frustrating to say the least. Never mind we can only do the best that we can and hope they find some sort of cure for this horrible disease.

[BB4ALL in reply to wheezyof]

Hello Wheezy, that's typical of them. I have to say though that here in Edinburgh the real educators for me were the nurses in the rehab unit here in Edinburgh. Good helpful people and the participants in the program shared with each other which I found very beneficial. Keep your chin up and hopefully there's light at the end of the tunnel.

[wheezyof in reply to BB4ALL]

The best help I've had has been from the lady who runs the lung function tests at our hospital and members of my local Breathe Easy group. All help is good wherever we get it. xx

[Hidden in reply to wheezyof]

Hi, my ambitory oxygen levels were measured in the same way last year, and I merrily carried on stopping frequently to get my breath back. I was recently referred to respiratory phisio, part of the DAIRS team, to see if I was breathing properly. After a chat she took me for a walk and increased the oxygen to 8ltrs (I was using 4), and she carried the oxygen cylinder, the difference was amazing. She doesn't think I've got any worse, just that my oxygen levels weren't assessed properly at first. It does mean that I've had to move to liquid oxygen, when mobile, which isn't as convenient as the concentrator machine, but I am more active so overall it's good, especially when going upstairs.

[BB4ALL in reply to Hidden]

Hello Mandy, that's good news. As long as you feel better for it then do it, to feel better, it's all we can ask for.

[sheila1kerry]

Funnily enough i just posted a reply to Candyred and said something similar about doctors and health professionals. I have found that my GP has very little time, very little understanding and very little interest. It is a really good thing that you got to speak to some junior doctors , let us hope that they will deal with their patients with some knowledge of how this illness affects us.

Sheila1kerry

[BB4ALL in reply to sheila1kerry]

I hope that does happen Sheila and thanks for the appreciation.

[Hidden]

You did well..I have had junior doctors every time having LAM but nobody phoning to thank me and being so honest so you have found a caring doc there, hold on to him!!!

Take good care of yourself x

Fran

[BB4ALL in reply to Hidden]

Thanks Happy,keep your chin up and smile.

[Hidden]

Well done for adding to the docs knowledge.

I do feel that as important is the education of people who have the power to affect our lives. We all know about the PIP assessors but not much is said about the tyrants in charge of some of the Blue Badge departments.

Warwick is particularly bad. They have no idea what struggling to get around with a lung condition feels like and in Warwick’s case, don’t even read the information sent to them properly.

[BB4ALL in reply to Hidden]

Thanks littlepom much appreciated.

[BB4ALL]

Thanks to all for the encouragement. I can only help or give them something to go on as far as I'm concerned, but as I read the postings here it appears we all seem to have very similar problems. I have asked the Dr for an alternative to the Salamol inhaler as I feel that it does me no good and I hardly use it anyway. I, like all of you want something that acts instantly, I don't know when I'm going to get breathless and when I do, I need it right then. I along with around 10 others took part in a video for the NHS here in Edinburgh which is due to come online for all to see. When that will be I don't know but they did say they'd tell us.

[Piperava in reply to BB4ALL]

Hi BB4ALL. That's very interesting about the video, was it made at ERI. Luckily respiratory medicine is my husband's Dr's specialty, My husband was first diagnosed with COPD but after numerous chest infections he sent him for a CT scan which revealed IPF. Will look for your post telling us when the video is available. Keep well

[BB4ALL in reply to Piperava]

The video was made at Great Junction Street Clinic in the Rehab rooms where they took video's of most of us discussing and doing exercises on the bike, treadmill, stepping up stairs, lifting weights, medicine ball, wall push ups, sit ups from the chair etc etc. The second week it was only question time and people elaborating on the condition and what they feel. Unfortunately I didn't attend the second session as I had a chest infection but I assume I'll be seen on the video on the bike and I also got a thank you card and telling me they'd be in touch when the video is released.

[sheila1kerry]

I just got an amazing NHS approved app. It has everything on it , even a complete Pul rehab course. I had to pay for it , but it was well worth £20 for lifetime access. Most things on it can be found on the internet but here they are all in one place.

Sheila1kerry

[donut43]

Well done, you did a good job there.

Dan

[barbs47]

Hi BB4ALL I found your post very interesting. My GP of 30 years went on a course about COPD. During the course they all had to put a nasal clip on their nose then put a straw in their mouth to breath through. They then had to exercise. My doctor was always very understanding and could totally get why I get anxious and can panic. It’s a pity that all doctors don’t experience this so that they could empathise with us. Barbs x

[BB4ALL in reply to barbs47]

Brilliant and that should be done my all GP's so they too can understand what most of us go through. Thanks for sending it on Barbs.

[barbs47]

I agree totally I think it should be compulsory Barbs x

[Kiaman08]

I was in hospital with my chest a few years ago even though i keep going in every year with a seriouse infection (the ongoing joke in my famliy is that u booked ur bed for every year at christmas time cause that the unusal time of the year that i fo in ) but antway let get bak to this wat u was talking bout like i said i was in hospital a few years ago and my consulton on her rounds came and done her daily check and asknif she cud come back with a few students later i said thats fine they turned up bout 4 and they talked to me bout my chest ,i have asthma and broncistesit (excuse the spelling ) they lisrern to my chest and was surpised that it sounded crackly i have a constant wheeze they asked question after i had told them my history and i explained how it effexted my day to day life and hiw i manged we were together for atbleast 90mins also my consulton was present aswell and i think she learn a few things that she was proberly not aware of but i am glad that i got a chance to explain to the further up coming doctors wat my life is like and i hope when thay start practing they remember our chat