Letter

[Pokermon]

Hi its me again just received my follow up letter from new Dr. Not sure she fully understood me according to the letter I can perform my day to day activities without getting breathless. I wish. I wasn't asked much about how it affects me but according to her iam fine. Fev1 of 38 very confused how can someone after a ten min meeting assume iam fine thankfully I manage well with help and taking everything slowly but if I didn't then I struggle so how is that OK.

[Hidden]

I wonder if its just down to a choice of words which so many can mis interpret. Perhaps the doctor just means your condition is currently stable.

I had a friend who once thought that because her doctor said her lungs were clear she no longer had a lung condition, but in reality the doctor just meant her lung infection had cleared.

Perhaps ponder a bit on the letter and then if you still feel that things have been recorded inaccurately reply to the letter so that will remain on your records too.

Best wishes

[sassy59]

Hi Pokermon, maybe you can contact your new doctor or her secretary and ask for the letter to be explained as you don’t agree with its contents. Get things crystal clear now so you know where you stand. I wouldn’t leave it.

Stay safe. Xxxx😘

[Offcut]

cdc.gov/niosh/topics/spirom...

This will give you an idea of your results it is not all down to FEV1 as all the other factors have to be taken into account?

I do understand where you are coming from I had similar They checked my O2 after I had been seated in Reception for some time in a nice quiet environment. Did the Finger test and say you are not that bad. Many times I told them sitting down doing nothing I am fine it is on mild exercise I am bad. I eventually had a spirometry test that showed RLD ( FEV1 with RLD is at least 10% higher than normal) Luckily my nurse new what to look for. It was later on they then sent me to Lung doc at hospital and even there they went on my at rest results! But I persevered and more in depth tests were done. I was found to have emphysema COPD , RLD and IPAH of which I get specialist care at Sheffield now (98 miles from where I live)

I am now CEV and on the Register for all that entails. plus my GP's now seem to except I am more broken than they first thought. One GP actually said to me as he was passing me "You are right your lungs are crap"

Be Well

[Katinka46 in reply to Offcut]

Good to hear from you.

Love your doctor’s honesty.

Kate xxx

[Badbessie]

Doctors letters can be so frustrating at times. Their statements can be misleading especially if read by non medical people at the DWP. Personally I would write a letter stating what your limitations are concerning activities during the day and ask for them to be discussed at your next meeting.

[corriena]

I would call her secutary and ask for o phone call to explane the letter. Just so you are sure what she actualy means. As your relationship with your dr is new it would make sence to clarify what she means. As others have said it might be just the way its written meaning you are manageing with all the help you have. Blody dr briliant and a pain all at the same time 😉

[Katinka46]

Hello dear Pokermon

How frustrating.

I do sympathise. I find that the stress of seeing doctors causes an adrenaline rush which means that I am not breathless when I see them. What they don’t see is how I am two hours later. And I am ancient compared to you and should be calm and relaxed! You can always query a consultant’s letter and question what has been written. It’s your case, you know how you are. Do you feel comfortable doing that?

What does your stalwart mum think?

The fact that yours is a very complex case means that your input should be respected. Establishing a good relationship with your new consultant should involve getting things right at the outset.

Love and hugs

Kate xxx

[tomc]

The last time I did spirometry, My consultant said my results were lower.

But she has made appointment for a walking 6 min test, and to be quite honest I am sick to the back teeth of getting differing opinions from different hospitals as regarding my (supposed) chronic pain of the left side of my body.

SO, Now I just say OK it`s the NHS budget you are wasting AND my life expectancy with getting more breathless trying to keep up within your circus.

Now I am told I am deconditioned? what!!! I write it all down hand hand the volumes to them, Just so they can read ,my novel before going to bed!!

Just remember, Breathing pattern change with different conditions and it`s your body telling you the absolute truth... not an outsider trying to diagnose you.

Stick up for yourself, they have been known to be wrong sometimes.

[Kristicats]

Please counter react/ reply to the letter to have it put right. There is way too many written mistakes put on peoples files that affect their ongoing treatment. Cx

[Katinka46 in reply to Kristicats]

I do agree. I regret not challenging things written in my notes in the past. That was heartfelt, Chriskho? Is there a story behind it? Can I PM you?K x

[O2Trees]

Do you know the concept of 'the expert patient' Pokermon? i.e. we are the best people to know what is going on, on an experiential level. This should be respected and listened to by doctors as there are conditions, yes, but every patient has a different experience of the particular condition(s) they have.

Your doctor needs to work in partnership with you and sometimes they need educating. I agree with sassy59 who says you need the letter explaining to you. Then perhaps you could write back to the doctor explaining to her where your experience is different to what she has written. Then at least it's in your file. Good luck.

[MoyB]

It can be upsetting and worrying if you think a doctor has got the wrong end of the stick and put something in your notes that you know isn't correct or hasn't even been tested. (Speaking from experience!)

As others have said, it's a good idea to make contact with the consultant to either discuss your concerns with them or to put your own views - preferably both! These days, it's often possible to email them via the secretary and then it's easy to Cc to your GP so that they know exactly what the issues are too. I wouldn't personally suggest you phone in this instance. A paper trail may be useful to you if they suddenly want to change your management plan and it goes against what has been agreed on the phone.

I certainly think some clarification is needed in writing from your consultant as to be deemed to be more able to manage than you actually can may affect you if you need to claim benefits of any kind one day or get a Blue Badge (I don't know if you already qualify for one so that may be irrelevant).

I suggest that if you write, be sure to thank them for seeing you and for their letter but let them know you are a bit worried that it makes it sounds as though you are better able to manage than you actually are. Then make a list of the things that you feel they could or should have taken into account. Try not to sound cross about it - just give them the facts.

It may be that what you have received is a fairly standard letter such as one I received from my excellent consultant once telling me that I had performed well in a particular test. I queried this when I next saw him for a follow up a couple of weeks later and said I didn't think I'd actually had that test. He checked my notes, agreed with me and asked if everything else in the letter was correct. He then apologised and it was corrected in the next letter. No problems of that kind since.

Good luck! xx Moy

[Pokermon in reply to MoyB]

I sat down yesterday with mum and wrote a letter as it bugged me a bit and annoyed mum a lot so at least we have told her how it is. It's very hard if someone asked you if you if your fine and you say yes. But don't understand your fine because you know your limitations and do things the way you do it that your body allows thanks all your advice helps a lot.

[MoyB in reply to Pokermon]

Well done for getting it down on paper! Well done to your Mum too for supporting you in doing it.

I know what you mean about 'fine'. It's a polite response when someone asks how you are these days - more like just saying, 'Hello' really. In fact you may be feeling like death warmed up but you still say, 'I'm fine' and if they don't continue the conversation it gets left there.

Everyone's 'fine' is measured on a different scale. My 'fine' now is not the same as it was six years ago - it just means I'm having an ok day and managing to do more things than usual. It doesn't mean I'm off on a five mile walk any time soon - just a five minute walk to the shop if I can manage it! So, yes, I know what you mean and, once they get your letter, your consultant will know too.

Keep us posted! xx Moy

[Pokermon in reply to MoyB]

Lovely reply explained it so good. 👍👍

[Pokermon in reply to Pokermon]

Also when I say struggled up the hill and others say what hill in my life a slop is a hill lol

[MoyB in reply to Pokermon]

🤣🤣🤣 I've often had that debate with my husband. I'll be huffing and puffing and he still thinks he's walking on the flat!! xx Moy

[cofdrop-UK in reply to Pokermon]

Sorry Pokermon this has happened to you. I dread to think what is in my notes before we received copy letters. I have challenged letters 3 times, the last one being the latest consultation where her comments were not an accurate representation of our conversation. It was important enough to get it rectified on my records.

Good on you and your Mum for writing. Don’t mess with the Pokermon eh!

Love cx

[Dedalus]

I agree completely with sassy - you need to speak to your new doctor or her secretary and outline your concerns. Best of luck and all good wishes with everything.