I have just seen the respiratory nurse at my (Welsh) GP practice who refused to assess me for AOT on the grounds that 1. My blood gases were OK, 2. I didn't finish the 6mwt and desaturated too quickly 3. She has to follow British Thoracic Society guidelines, which are admittedly ambiguous. She criticised my using my scooter, no consultant ever has, but when I also told her that respiratory physician had advised PR she said she had to check with cardiologist to make sure I was well enough to do it. It seems I can't do right whatever I do. Despite the fact that I have received a pamphlet from the Gloucestershire CCG the Welsh Health board don't seem to have disseminated the information to doctors. I am currently waiting to hear back from the CCG having left a message, also I shall contact the consultants and see what they have to say. I also intend to contact the practice manager about all this. The daftest aspect of all is that Bristol is the centre for people like me for the whole of South Wales. NHS what's that?
Ambulatory oxygen: I have just seen the... - Lung Conditions C...
Ambulatory oxygen
you know your own body, and if you feel you can do pr then go for it. Good luck,let us know how you get on.😊 xxx
Hello Carnival567 .
I am slightly confused. If you are losing saturation doesn't that mean you need the oxygen? I guess it depends how low it went. As for blood gasses mine come up very quickly so they barely got the reading they are technically required to but they managed somehow because they knew I needed the oxygen when mobile. How far into the six minute walk test did you manage? Did you stop because your oxygen dipped too low and you were very out of breath? I'm not sure what the British Thoracic Society guidelines state but you definitely have the right to challenge this.
I'm sorry it's been a frustrating day for you. Sending gentle hugs.
Cas xx 🌹
Thank you Caspiana. I managed 4 and a half minutes and nearly collapsed. Sats went down to 84 and I was very out of breath. I discovered on Tuesday at A & E that the pulmonary fibrosis is severe and throughout my lungs although the bronchiectasis is not too bad at present. The cardiologist is waiting to discuss the aorta problem with a cardiothoracic surgeon who specialises in aorta problems as he is not sure whether my lungs will cope with surgery. The British Thoracic Society seems to in two minds about people like me but it does say that people not on LTOT but who desaturated rapidly on exertion might benefit from AOT and would need to be checked frequently. I don't see why they can't try it and see what happens. Being Welsh it is probably money. Next step is to contact the hospital in Bristol to see whether the consultant can sort something out there.
I am happy to do PR if they will let me, but given the serious heart and lung problems I would prefer to have the consultants on side. The respiratory consultant wanted me to but last time it was the cardiologist who said I couldn't. The nurse is planning to check. Not until September anyway.
I am really sorry Carnival567 . How frustrating this is for you. How do you manage daily if your saturation drops so upon exertion? I find it hard and that's with the oxygen!! I cannot imagine. I don't know what to advise but I am thinking of you. Please do keep us updated.
Cas xx 🌻
You just have to get on with it don't you. I have never been a sitter about doing nothing, I stop and rest when I need to then carry on. xx R
You replied to Cass while I was typing away. September?!
Could you do some gentle sitting exercises at home if you want to? BLF have a good exercise book. You could maybe phone the helpline and ask the nurses for some advice. Sue x
I have quite a lot of exercise throwing toys for the puppy to play with. Also I do as much as I can and walk when I can. Since Chepstow is built on a steep hill it is a challenge even for the able bodied. I already refer to the BLF exercise book. Thank you for your concern, it means a great deal.
It's a bit of a mess, isn't it Carnival? Not what you'd call joined up thinking at all.
I agree with Cass in not understanding the thinking of your respiratory nurse at all. I don't understand that desaturating too quickly is a contraindication? Would have thought the opposite. But I can see that it makes sense to check with your cardiologist about PR, because you need to know your heart will be safe with it, if you see what I mean.
Groan - on your behalf. It seems ridiculous that patients should have to contact different consultants and GPs to clarify their own position. Isn't that what letters are for? It's exhausting and I wish you well. Do let us know the outcome. Sue x
Never mind letters Sue - they all have computers now and should be able to cross reference easily in a few minutes max. That's one thing the NHS has never been good at - being holistic. That would come up time after time at the multidisciplinary respiratory education network they run for staff in my area, and patient reps can go too. The PRs would always say about the lack of a holistic approach.
Would you believe that the Royal Gwent won't communicate with Southmead? Me neither. You would think it was on the moon rather than only 20 miles from Bristol. Love the Welsh people here but the Welsh bureaucracy is something again.
I've lived in Swansea - I know. x
More of your nightmare. How intolerably frustrating. In and amongst all the other things going in your rib cage do you have pulmonary hypertension? If so any exercise programme would have to be very carefully monitored. And whether or not, I do think you need to check it all out with your cardiologist.
My heart rate shoots up on exercise, has done ever since all this started, and recently I have been stopped from completing exercise tests: incremental shuttle walks and 6MW.
You are such a rare beast that I genuinely think your guess is a good as the medical lot. Go with your instinct.
Love and hugs
Kate xx
What a lot you have going on I think it is absolutely atrocious how you are being left to do the leg work if you see what I mean thinking of you
I have always been a bit of a challenger of bureaucracy, first for my autistic son and then I joined a police committee to advise on work with the disabled, and then joined a group who helped disabled people get access to services. Can't bear injustice and unfairness. However, I am getting a bit fed up with all this struggle, but I contacted the consultant' s secretary and have emailed him. He strikes me as the sort of chap who will sort something out! I do hope you get your stairlift dilemma sorted out soon.
Indeed I do have pulmonary hypertension as well as a 50 % stenosis of the aorta. I have just spoken to the respiratory physician 's secretary and emailed an outline of what has happened so I shall wait and see. I feel like Alice in Wonderland sometimes!
It really, really shouldn't be down to the patient to do all this. But I'm afraid it sometimes is. Very familiar. Perhaps we are too knowledgeable, clued-up and competent? Can't see you playing weak, feeble and fluffy of mind. Me neither....
I agree, but doctors have never understood my heart condition. I was once asked by a paediatrician who was caring for my son if I could explain it more because he had a patient who had just been diagnosed with it. Life would be easier if I could stop collecting rare diseases. I expect you feel the same. I don't think either of us is weak and feeble minded. We keep on and on..........
Blessings R
That's all very frustrating Carnival. It seems like a 'damned if you do and damned if you don't' situation. My first 6mwt, my sats dropped to 78 and they were all for signing me up for Ambulatory Oxygen, there and then. I didn't agree so it didn't happen and subsequently ( after further tests ) it was decided I didn't need it after all. Maybe they want to wait until all your tests are done and results collated, before making a decision on the oxygen. I hope you get some answers soon.
Me too. I had full lung function tests in the autumn with 6mwt, scans October and January also cardiology tests. Southmead have been very good, but Welsh NHS are definitely different. It is all right being with one or the other but mixing and matching not on. This is why I'm trying to get some answers from Gloucestershire CCG as they say as a patient living in England with a Welsh GP you can have the same rights as an English patient with an English GP. The Assembly and Westminster are supposed to have agreed to this as from last July but the Welsh NHS haven't caught up. I understand that it is worse in our bit of England because we are between the Severn and the Wye and there are no English GPs conveniently near. I shall be contacting the practice and the MP after I hear back from the CCG.
So sorry, I'm new to this site. I think I must have posted something in the wrong area. I have been conversing about thyroid medication etc. Not lungs. Not my area of expertise. You all sound like your having a rough time, sorry once again that I can't contribute.
I feel both angry and sorry for you when I read this absolute horror story. Obviously just one side of story but it sounds like an all too familiar case of the NHS struggling to treat someone with a series of complex medical conditions that has been compounded by a respiratory nurse playing a pretty cheap trick of falling back on the "just following orders" excuse (i.e British Thoracic Society guideline) rather than giving you an understandable explanation for why he/she is denying you ambulatory oxygen.
The guidelines are not easy for patients to read (perhaps written that way for a reason) but it looks like if your resting SpO2 is not below approximately 88% then you do not automatically qualify for any form of O2 and are then at the mercy of someone like your respiratory nurse who can hide behind the guidelines, especially if you have PF for which there seems almost no information on benefits of O2.
If I were in your position I think a little bit of extra exertion prior to, and light beathing during, your next resting O2 measurement might be the way to go. I desaturate on exercise and often find myself around 85-88 if I'm late for appointment and talk to nurse while having O2 measured. Failing that you could raise the following "good practice point" from the guidelines
"It is recognised that there may be some patients, for example with ILD and disabling breathlessness, who do not qualify for LTOT but who do desaturate on exercise, who may benefit from AOT. Once all other medical interventions have been optimised, these patients could be considered for AOT following formal assessment and AOT use could continue following demonstration of benefit and compliance"
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