I would be really grateful if I could hear of people's experience of being assessed for AOT. When I had my run-in with the respiratory nurse who told me I couldn't have it the only thing she did was an earlobe blood gas test which was normal, which made her say that I didn't need it anyway. I was so upset with her attitude that I didn't pursue anything then, but I have given it more thought since then
1 She obviously couldn't do an assessment when I was in Atrial Fibrillation, perfectly reasonable.
2 Surely if I am to have an assessment to see whether I need oxygen when exercising I should be exercising for the assessment, and for the blood tests as the British Thoracic Society guidelines say.
3 Why did she say I couldn't have an assessment when I told her my SATs went down to less than 84 and I was unable to finish the 6 mwt. Everything I have read since on here and elsewhere is that I should have been offered oxygen in these circumstances and wasn't. I feel I have been abandoned. I have told my consultant what happened but have heard nothing back. My GP is on holiday but I shall make an appointment when he comes back.
I will be very glad to have your comments.
I forgot to say she said nothing about future appointments. I have told the GP I saw last week what happened and she was shocked. No doctor nurse or consultant has made the rude comments about my mobility scooter, if I had oxygen perhaps I won't need it so much. I am due to start PR in September if my cardiologist allows it, in the balance at the moment because of all the heart problems I have. I do not have COPD but I do have bronchiectasis and obliterative bronchiolitis. My lung disease is very severe.
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Carnival567
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My oxygen assessment was at the pulmonary rehablitation assessment.
A short walk showed desaturation to 83%, tried 1lpm, not enough then tried 2lpm. OK. Since then my needs have increased to 4lpm.
Since being on Ambulitory oxygen only I have attended six monthly, now change to yearly assessment. Which is the six minute walk test, never done more than three minutes which was not a concern because I was being tested for oxygen desaturation, not walking ability.
Oxygen levels can still drop even on oxygen, what the six minute walk test can show you starting level mine is 96% and your reduced level mine was 92% with a recovery time of one minute thirty seconds.
Improved since on last one maintained 94% for duration of test. I do my own six minute walk test and have been able to maintain 94% for the full six minutes.
The Community Respiratory nurse came to my home to do my assessment, but the first time she came I'd had an infection and been on Anti biotics so was told this would give a false reading, but that she would return in around three weeks.
When the second Nurse arrived, I was three days post chemo and feeling quite good, my sats, usually around 87 to 92 resting, were 95. I asked if and how she would assess the 6MWT and she said she wouldn't inflict that on me, at the time I thought that was quite kind!
Instead, she had me walk from my armchair into my kitchen and back, we've since measured this distance, it's actually 12 metres.
My SATS dropped to 93, returning to 95 / 96 whilst we sat and chatted. On the basis that my SATS were not below 92, she said she would not do my earlobe test and she recommended that I do not require Ambulatory Oxygen.
At the time I was quite pleased, because I took it that I was improving, and that's a bonus, the problem is that after the initial fatigue, the chemo does for a few days, give me a boost. But it's short lived and I'm now back to 88-93.
In retrospect, and from everything I've now read on here, the outcome of the assessment is not valid and I will take it up with both the Senior nurse and my respiratory consultant.
Stone, I have a 6MWT app on my phone, what conditions do you use when you monitor yours, do you walk uphill, at a certain speed, have obstacles etc.?
You seem to be having the same sort of problem. It seems they can't cope with 'co-morbidities' despite the fact they are always saying what a problem it is with older patients. About time they did.
My blood gas test also was not helpful because by the time they got the blood out my oxygen levels had come up to an acceptable level. However, like you during my six minute walk test I went down to about 85. So the doctor figured I need the oxygen despite not getting the reading required. He found a way around it. I'm not sure if this is what you wanted to know. I hope you are having a good day so far.
Thank you everyone you have confirmed what I thought. The nurse couldn't have done the 6 mwt because I was unwell but it seems nonsense to say that I cannot have AOT at all eventually. I am sure if the consultant says I should be assessed then I should be. Unfortunately he doesn't seem to have sent any information to the GP so that is another thing I shall have to ask about. I should be used to it after 40+ years of chasing up doctors but it is very tiring. If I get to the PR then presumably they might sort it out but that is 6 months away (September) and next PFT in October. Just have to keep on plodding. I have just reread Stone's post about not finishing the walk because of desaturation so her comments are even more confusing. The BTS guidelines that she is so keen on do say the earlobe test should be done twice, also the 6 mwt with a 20 minute rest in between. My SATs are usually 93 at rest if I do things like knitting, or throwing toys for the puppy, but go up to 95 if I sit in a waiting room doing absolutely nothing but go down quickly if I do anything and the more I do, however gently can go down to 85 ish. Considering the nurse said she took off another 2% for people with heart problems that makes it quite low. Some days are worse than others of course.
Carn567 if. For what ever reason. You think you should have assessment for o2 your Dr. Must send you for a 6 min. Walk test. It seems for some reason. They. Do not issue. O2. Easy. I have been on it now. 5 yrs. ambulatory mean S you only use. When. Moving. Like. Stairs. Moving about to be. Honest. I find that the effort of carrying o2 bottle. Tenses up. Shoulder and upper body. And that. To breath when. Breathless. Is the last thing you need. Being tensei hope. You do not need. O2. Because it will mean you are very bad COPD. Well. Good luck. And I wish you well. Look after yourself.
Thank you. My consultant suggested I was assessed for ambulatory oxygen because I desaturate quite severely on exercise, from 94 at rest to 84 on exercise. I do not have COPD but I do have bilateral bronchiectasis and obliterative bronchiolitis, which is a fibrotic lung disease. My consultant has told me my lung disease is very severe. I also have a rare heart condition, and have been told that I need treatment for that again if my lungs can stand it. My problem is that I live on the English -Welsh border, in England. I have a Welsh GP but because I live in England I have the choice of hospital, so I chose Bristol because they are the centre for my heart problems. Unfortunately my respiratory nurse comes from the hospital in Newport. The Welsh NHS and the English NHS do not appear to communicate. My GP is helpful but is bound by Welsh rules, which are more restrictive. I have had good care from both sides on the whole but the Welsh nurse was in an extremely bad mood when I saw her, she may have been unwell, and was very unkind. Charitably it may be because she knows that I need to be assessed but is limited by what she can do without permission. My doctor, for instance, cannot send me to an English hospital when I am acutely ill but can refer me to a consultant. When I developed Atrial fibrillation he wanted to send me but couldn't call an ambulance for me, so he provided me with a letter and my husband took me. I hope this helps to make things clear.
P.S. I do not particularly want oxygen, but if the consultant wants me to be assessed I do not think it is up to the nurse to be so awkward. After all, no one knows what is necessary until it is researched, and after listening to a programme about medical negligence this morning I do not want to be another statistic!
My husband has COPD and his sats dropped to 78 and was sent for an AOT assessment. This was conducted at another health centre. He was asked to walk up and down a corridor for 6 mins with a SAT monitor on, whilst dodging other patients. This test in my opinion was completely pointless, it was an ambient environment, on the flat completely unrealistic as he gets so breathless on exertion outside!! She was also very unpleasant and apparently worked for the oxygen company providers, so was all for saving money. My husbands blood was alcoletal at the time and she was far more interested in finding out about that than his actual needs.
Needless to say he was not given any oxygen and we struggle on. I believe that your sats have to be less than 84 to qualify. They don't like to give it out as it is expensive and you need to be on your last legs before they will provide it.
All the best hope you get some help from the GP but I know that they can't prescribe it. You have to pass the assessment to get it.
Yes I do sometimes wonder about their criteria. Walking on a flat level surface doesn't really replicate real life, and dodging other patients hardly helps. They want us to be more active but sometimes I wonder how they think we are going to achieve this, although I have read research papers that say that a lot of people who get ambulatory oxygen don't use it. They are probably so exhausted by the time they have fought for it that they have lost the will. I feel so frustrated because of this English- Welsh problem. I have referred it back to the hospital and hope they will sort something out. Otherwise I shall have to wait and see what happens at the PR course I am supposed to be going to, but that is not until September and I still have to ask my cardiologist's opinion. Meanwhile I hope that they get the atrial fibrillation corrected soon, as that is really wearing me down. All the best, nice to hear from you.
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Home oxygen advice needed!
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