I am a carer for my wife Sue who has COPD. Our GP's have been giving us the runaround since Sue was diagnosed in December2013, well the practice owners' have. One of the salaried GPs has finally referred her to a specialist but the NHS does not allow urgent referrals through the on line booking service and so I contacted the local hospital directly and spoke to the nurse at reception on the chest dept, she has promised to get the appt brought forward.
Her SATs tend to fall below 90 but most of the time they are in the 75/88 range. She has scarring on her lower lungs from infections, the Clarythromycin she was given in August has robbed her of her sense of taste and she has problems with her sight.
We both realise that the lack of oxygen in her system is to blame for the non recovery from these problems as the immune system is not working properly.
Any advice as to whether it is better to wait for the specialist to put her on oxygen or jump the gun and buy her some?
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Sue-shusband
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I am not on oxygen but from reading posts from others I think you should wait until you see a specialist. It isn't a straight forward thing to have. Need to get flow correct, how many hours for etc. Having said that with those sats I would be jumping up and down demanding an oxygen assessment asap. That can be done whilst waiting for specialist. The other way round it could be to arrange to see specialist privately for initial visit. Then you can revert back to NHS. It is a bit sneaky but I have done this in the past.
There are things I don't quite understand in your post, but it's obvious that Sue is poorly and that you're worried. To answer your question, I don't know if you can go out and buy oxygen these days. It's given on prescription by a consultant. - but it isn't clear how long you'll have to wait for the appointment. You do need to know how much Sue needs - how many litres per minute and how long for. It will be delivered and it's free.
75/88 does need treatment. Can you call a doctor over the weekend who might/ should send her to hospital, or could you take her to A and E and get her seen that way??
I don't think I'm being very helpful and have got to go ( sorry ) but I'm sure someone else will be along very soon. It's awful the way some patients are treated. I really feel for you. Do let us know how you get on.
75% is extremely low as you are aware SH. If your wife is usually around 88% then it's probably ok to wait for the appointment. If she's usually at the lower end of the 75-88% range, then if I couldn't get an appointment I would get myself to A&E.
Why don't you call the BLF helpline 03000 030 555 (duh, is that right anyone?) Their nurses will be able to give you good advice. It does seem strange that you can't see someone sooner with those sats.
Another way to go would be to see if there's a community respiratory team in your area. We have one and the nurses do oxygen assessments and prescribe O2 themselves and it arrives the same or next day. The contact person for your local Breathe Easy group would probably know, there's a BE page on the BLF site. Some teams will take self-referral.
Hope you can get something sorted - if this has gone on since December that is shocking. Best wishes to you both.
it is 100% unsafe to self prescribe oxygen without medical supervision.
Oxygen can be harmful as well as helpfull.
Can you not speak to the respitory team at local hospital for guidance or assurance.
Oxygen if and when given is to protect major organs.
88% or above is reasonable, below that is cause for concern, but would need the correct testing for clarification.
Waiting for the specialist may seem a long wait, but oxygen as to be correctly prescribed whether long term oxygen therapy LTOT, or Ambulitory oxygen therapy.
Welcome Sues-Husband. Hi to both of you. What a blooming terrible state of affairs your whole situation is and to think you're not much wiser than in 2013 when Sue was diagnosed with COPD. Watford Girl and Bevvy are both correct about oxygen has to be prescribed by a respiratory nurse or Consultant so you must persevere until you get an appointment. By the sounds of it, Sue falls into the category that would most definatley benefit from Oxygen. All this needs to be correctly calculated and then that's really it. However, as your post tells, its sometimes a 'slow' procedure but you must keep on at your Doctor. Sorry I can't be of any real help but would love to hear how you get on etc. Kind regards.
Hello Sues-Husband.
I'm so sorry to hear about your fight with the NHS..I've had many a battle myself and often got results by complaining to the CQC. All I can suggest is that you go to their website and put in a complaint about the GP surgery, it will get investigated, I've always had results. If you aren't happy then contact PALS at the hospital your wife's appointment is at and have a word with them, they can often intervene and offer advice. If her condition worsens then don't hesitate, take her down to A&E or call the Paramedics, don't wait.
As for the Oxygen, well I am on Oxygen, 2 Litres an hour 24/7, as my stats fall to 87-85% at rest and I become Hypoxic. The Hypoxia alone is awful, let alone the inability to breath. I really wouldn't advocate you trying to do it yourself. The literage per hour is crucial and that can only be measured by an assortment of blood tests, so please don't be tempted.
When I was short of breath one morning my wife called an ambulance and my days were around 89, I was taken to A&E and was admitted. I had a bad chest infection. But after the infection was sorted they only discharged me when my SATs were 95. Your wife should be admitted to hospital with those SATs.
Good morning Sue-shusband, and a warm welcome to you.
I can see you are worried sick about your wife, and I do feel for you. I wish I had some helpful advice to offer but sadly I don't, but I bet it won't be long before someone comes along to give you the answers you need to get things moving along. I've just scrolled down and can see that there is lots of sensible advice here for you. All the very best in getting the right treatment son as possible.
I was admitted to hospital by my gp when my sats where 76 so if i was in your shoes i would take her to A&E she could have an infection but even if she hasnt she needs oxygen asap
Sorry you are having these problems.. I wouldn't buy oxygen, it's really important to have the right amount, could do more harm than good. Hope you get an appointment soon.
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