Information sadly lacking on O2 therapy.

Having read a number of posting relating to people's struggle to access the necessary information required to use O2 to it best effect it simply beggars belief that those responsible for prescribing it fail to provide appropriate ongoing support.

I have recently come up against the apparent lack of knowledge in relation to home and ambulant O2 use. Having picked up a chest infection over the weekend I was running out of O2 when I visited my GP, I told him I had urgent need of additional O2 and asked that he help me get an additional supply. He said he could not help and was about to send me home knowing I would run out within half an hour. I had had to use 6lts pm to get to his office and he seemed to think I could survive without any. I had to have him call an ambulance to get me to the local A&E as a short term place of safety. I knew they could support me untill arrangements could be made to drop more O2 at my home.

The so called perspirity nurse had no idea about my O2 needs, I was in A&E for 41/2 hours and they had me on 2lts pm throughout. This nurse tried to send me home knowing I would be without any O2. If I needed 2lts pm in an hospital environment sat still relaxed how on earth did she think I could survive on nothing. I had needed 6 lts pm just to get into A&E.

I later found out via my regular O2 nursing service that the respiritry nurse had admitted to her that she knew nothing at all about how patients use bottled O2 but rather than admit to her ignorance she simply tried to hid her incompitance by bullying me into leaving without an appropriate O2 supply.

If your GP and respiritry nurse has no idea what they are dealing with what chance do we as service users have?

I have made a formal complaint to the CEO of the health trust, let's see what happens next.

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9 Replies

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  • Good for you for complaining. I have found similar levels of ignorance when dealing with any but my own team. The really sad thing is, they will not take advice from me, the one who has lived with it for nearly a decade and has done comprehensive research in that time.

    - The patient knows best?

    - Preposterous!"

    As a point of interest, when my oxygen supplies were running low and the oxygen company could not deliver in a timely fashion, they advised me to ring 999 because it is classed as a medical emergency.

    Toci

  • I have an New life elite oxygen concentrator which is running 24/7 could you not have one in your home. I also have the Inogen 1 portable for when I do manage to get out about both supplied on prescription.

  • Hi

    As far as I know, GPs are not involved in oxygen therapy.

    My oxygen prescription was firstly done by the respitory nurse at Pulomonary rehablitation then transferred to the oxygen team at the local hospital, I have a direct line number for any concerns, and I attend an assessment every six months.

    Any concerns about supply should be directed at your supplier, they will have a emergency call out procedure.

    I use air Liquide, next day delivery for normal use, plus four hour emergency.

  • I certainly agree with you regarding lack of knowledge about oxygen users in hospital. I was in overnight recently, going in through a&e. The ward nurse had no idea. I am co2 retentive and was concerned because I thought I needed lower % oxygen. She didn't know whether the ward oxygen was 100% or what. She also did't know you could get high flow cannulas and said they normally only give 2 - 3 lpm. I am on 5 lmp.

    I am sorry to hear that you ran out of oxygen - that is my worst nightmare. I am on 5 lpm sitting and 8 lpm ambulatory. I always check my cylinder before moving from the house. I keep a spare in the car and always book my next supply in plenty time. I have 8 large cylinders and replace when I am down to 2.

    It sounds like you are on 6lpm when you are walking and 2 lpm when static. I'm surprised the ambulance men had you on 6 lpm when en route - you should have been on 2 lpm when static. Are you on a conserver when walking around? This gives you oxygen in small bursts and doubles the time a cylinder lasts. I also drop my cylinder litreage from 8lpm to 5lpm when in the car/sitting in a cafe etc as I am not moving so much. But this needs to be discussed with your own oxygen nurse as it may not be good for you.

    Like snook I was wondering why you don't have a concentrator at home if you are unable to be off oxygen for a time. If you had one the hospital could have sent you home by ambulance and the concentrator would have kept you safe till your new supply arrived.

    As Toci says we really do need to stand up and fight our own corner. I so hate it when my veiws are dismissed or I am made to feel 'fussy' when, in reality it is the nurses lack of knowledge.

  • good for you it does need reporting and i agree with you ive been amazed how many so called professionals have no clue about 02 use.......when i was in hospital last time and my sats dropped when i was sleeping the nurse turned the oxygen on full to give me a "good blast"""her words

  • That is disgusting - she is listed as a specialist in that field but is totally incompetent and it appears unwilling to find out what she needs to know. She should be disbarred from ever nursing again. Well done for reporting her.

    I'm also on oxygen but everyone has already given you the good advice I would have given :)

  • There really is no need to run out of ambulatory oxygen if you reorder in time. All the suppliers offer a 24hr service. Like others, I am curious as to why you don't have a concentrator at home and a conserver on your ambulatory supply. It is not the GPs' responsibility to supply oxygen. You need to consult your O2 supplier and/or your O2 consultant to sort this out. This situation is completely avoidable. I do sympathise with you about oxygen therapy in hospitals as it seems to be universally of poor quality. Good luck in future.

  • I'm so so so sad!!!

    All l can say is please keep telling your truth, your stories over oxygen therapy.

    I'm unable to share our whole story as l'm in process of life story over hubby being looked at through the system.

    I've been asked why, leave it alone, have you not all been distressed enough.

    My truth is it might be distressing to me but no way can l not tell our truth over IPF, with hope that 1 person/ family will not have to go through what we are now having to deal with.

    Sending loving care.xxx

  • Hi everyone one sorry for not responding sooner. Prior to the weekend mentioned in my first post I had been on 4lts pm ambulant use only for about 5 month and was in fact using a conserver which meant I could make a light weight bottle last between 4-6 hours. Whatever happened over that weekend change everything in a very short time, I was staying in my caravan for the weekend and had taken more than enough O2 to to last me about 4 days at my normal daily use. Friday was as normal, Saturday morning I needed 2lts just to sit still and 4-6 lts to walk the length of the caravan same on Sunday so we returned home in order to get resupplied asap. going from 4lts ambulant only to 2-4 just sitting had drained all my reserves. I don't have and have never had a care team to turn to in that emergency situation I was left completely to my own devices.

    Following my A&E experiences I received a home O2 converter 2 large bottles in case it breaks down and my my prescription for bottled O2 has been doubled. I have to wait another three weeks before I can see a community respiratory. nurse for advice on my ever changing O2 need. which are never the same from day to day. Before this episode I could walk on 4lts for about 25-30 minutes on level ground, today just getting up each morning has become a bit of a nightmare, I need 6lts just to get dressed with short bursts of 8 and 10 when I start to hypoventilate.

    Had I had a care team none of this should have happened.

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