Receipt of Pathway report.

[barneysbull]

Hi all,

Firstly many thanks for all your responses to my previous enquiry. All have now been taken onboard.

Today, I received my follow up report from my nurse led oxygen clinic reassessment of oxygen levels - whereas I agree with most it, I find that one particular statement leaves me stunned. '... we did talk about whether he would benefit from having the oxygen as ambulatory but he would prefer not to do that. I will therefore deinstall all of the oxygen equipment.'

Up to the date of my appointment, I had been on 16 hours daily 2l/min oxygen.

You can understand that going from that to zero with immediate effect was somewhat stunning. Just by my word, (although as reported it is not the WHOLE story - my objection was because I was unable to wear the backpack comfortably and NO alternative was offered) the oxygen has been ceased.

The point being that I feel I still have a need for oxygen supplement in some way.

Any and all response will be gratefully received.

[Damon1864 Volunteer]

It must have been a shock for you, I have my oxygen nurse coming out tomorrow but they have told me I can either have a backpack or a small trolley. Hope you will be ok without any oxygen. 😊 Bernadette xxx

[barneysbull in reply to Damon1864]

Hi, unfortunately until I am able to pursue further my 'need' for at least supplemental oxygen - which I am hoping will be sooner rather than later - I will continue to be reliant on good old Norfolk air, but thank you. 🤢xx

[mrsmummy]

It looks as though there may have been some misunderstanding. Why not give the BLF helpline a ring for any advice they can offer? 03000 030 555 during office hours.

[barneysbull in reply to mrsmummy]

Hi, i've taken your advice, and spoken to the helpline, who have given me some 'direction'. They are also sending me some literature which they believe will give me some 'hard' evidence with which to move forward. Once again, many thanks.

[mrsmummy in reply to barneysbull]

I am pleased the call was helpful.

[hopetorun]

Sometime you make a comment out of frustration and it is taken all out of proportion. I suggest you talk to them again and say you recognise the importance of maintaining your oxygen levels but need to find a way of it being delivered in a comfortable practicle manor. I hope you find a solution

[barneysbull]

Hi, it was not so much a comment made out of frustration, but more about the practicallity and comfort of wearing the backpack and bottle. Unfortunately, my spine is not straight and having tried out the system as provided, I had found it unsuitable. At no time had I 'refused' ambulatory oxygen, but no other solution was suggested. The letter unfortunately leaves any reader with the impression that the complete removal of oxygen was down to myself, rather than for any medical reason. Thank you for your suggestion, which is under consideration.

[Inamoment]

That's ridiculous. If you are on oxygen all the timeish, how can anyone measure your oxygen level in any meaningful way? By coincidence the guy who assessed me decided my ambulatory oxygen was to be reduced from 3 to 1. Actually it is going to 4 and 1 when sitting. I rang the hospital and dolby to get it sorted.