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Fighting for oxygen at home

Miss_gaga91
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Hi everyone, 

My mum was diagnosed with lung cancer in October&we recently found out its stage 4 The past two weeks have been hell. She's been in&out of hospital with severe cellulitis&her breathing (she also has asthma) needing nebulizers&oxygen to help. My uncle suggested we get her some oxygen at home for if&when she needs it, so she isn't going into hospital&being frightened all the time. I contacted the GP who said she wouldn't qualify for oxygen as her stats where good in hospital. (Of course her stats will be good when she's had numerous nebulisers) ‍ I've spoken to a lung nurse at the hospital who also told me it won't be her cancer causing the breathlessness&she won't be able to have oxygen at home. Even if i can prove her stats are low at home it won't be reviewed Im absolutely furious. My mums suffering in the evenings&I know 100% having the oxygen would help improve her quality of life at home. Her oncologist is the only one fighting her corner&saying she should have it. I just don't understand why I'm having such a fight on my hands No one has even sent a macmillan nurse or district nurse to us to assess her needs/support It's disgusting how we are being treated at the moment by those who are supposed to help us. 

I'm not sure what the next step is yet, but if anyone could point me in the right direction please let me know. Im at my wits end

Thanks 

X

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    Sorry you're having such a tough time. People with lung issues are not getting same service as usual re COVID. For a start a lot of lung function tests not being done (though they may still be doing diffusion) plus oxygen equipment needed to fight COVID. So I think the threshold for having it at home has risen and the respiratory consultants will be most aware of the restrictions. Can I suggest you speak to respiratory charity such as Asthma UK who are very up on issues like this given your mother's double diagnosis (if you haven't already). If you are attributing the improved oxygen levels in hospital to nebuliser then important to address whether what is needed is a nebuliser rather than oxygen. Do you have a nebuliser at home now? If not, then I think that would be first next step which is why I'm telling you to ring Asthma UK tomorrow. A nebuliser is easier to arrange than oxygen at home – oxygen cannisters have risks and there are strict criteria/protocols to go through. I've been lent a nebuliser for use at home when needed. GP is best placed to advise on nebuliser at home as first point of contact (but your case will be stronger if you say to GP discussed with specialist asthma nurse).

    My grandfather did have oxygen at home for his lung cancer. My other grandfather (COPD and asthma) was on oxygen on a specialist ward towards the end of life (old cottage hospital). But we are talking many decades and in one case almost a half century ago now. 

    Wishing you luck. 

  • Offline in reply to Anonymouss

    Thank-you for the reply

    I didn't even think of the oxygen being hoarded for covid patients  :neutral: you would think patients with lung cancer would be higher up the chain as a priority. This isn't mt first rodeo with lung cancer. My 39yr old cousin had a 12wk battle with it four years ago. She had oxygen&even portable too. I looked after her the same as I am now with my mum&I don't remember my cousin having to fight to get oxygen. 

    Asthma UK sounds like a really good charity to help us too. I didn't know they existed so thankyou for that. Nebulisers are a touchy subject too lol. They are refusing us that. I even offered to pay for one if they prescribed the medication and I was told 'well if she needs a nebuliser at home, then she should really be in hospital'. It feels like they want my mum in&out of hospital scared stiff with no family around :neutral: 

    time is precious with mum&I want her to be comfortable at home for as long as possible. It's unfair they are putting us through this. And the fact no one has even sent out a macmillan nurse. Its all 1 big joke. 

    xx

  • Offline in reply to Miss_gaga91

    Specialist asthma nurse should be able to talk through other options to nebulisation and help you formulate a plan to avoid hospital if possible. Doctors may be allowing you to do less because of the double diagnosis... it can vary from area to area and hospital to hospital and also on how well the doctors feel you are able to manage not just the cancer but the asthma too. So, given things are worse in the evening, first step maybe talk to one of those asthma nurses and see if complete home management is really viable when everything flares given the complexity of your mother's case (cellulitis, asthma and cancer). You need to take a bit of a step back here because getting the go-ahead to manage your mother's care at home requires your winning the doctor's trust and their being sure you can manage all three conditions and, most importantly, know when to defer back to the hospital. But it's very tough. I've looked after someone who had multiple admissions for lung issues and hospital is a difficult environment with all the checks they do through the night, the noise of the place etc. But sometimes it is the only place to be when things flare up. Not easy to manage given all the co-morbidities.

    Hoping you get to spend as much precious time with your mother as possible and you get a good package of medication to help with breathing and other issues. Not having the expected cancer support is doubly tough. You can ring one of the cancer research nurses to consider that aspect too.  Satisfying yourself you've done all you can to optimise your mother's oxygen intake in the short term is an immediate issue for you. I've rung the asthma helpline myself twice in the last few months. The advice I received in helping me formulate a better treatment plan/how to frame issues I needed to raise with GP was excellent.  xx

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