Post Code Lottery Part 3 and a bit

[skischool]

Anti Climax

The nurse arrived.lets call her 'Betty' without cones or fold up coridoor and with no intention of doing an Ambulatory assessment.My watering of the living room carpet has been a wasted effort.

What that would be silly states Betty!We don,t do them at home that would be impossible to do the 6min walk test."i have come here to do your LTOT assessment.

Scruffy gives a knowing wink and heads off for another bowl of doubly delicious.

"Oh what a lovely cat "states Betty by which time Scruffy porting Pulse Oximeter and slash in left ear heads for garden.

So we have the test done just for the crack all testing done on air with Sats of 90% and gas analysis borderline for LTOT needs.So everything fine says Betty,Yes i realise that say I but the whole idea of an Ambulatory assessment was because i desaturate rapidly on exersise.Oh we only do Ambulatory on people who are already on LTOT!

Anyway you have elected to see a consultant in Wythenshaw and not in Tameside we do not want to replicate tests they may do as it would be a waste of NHS money and resource.

So in essence you can not collate this material so that i can take the very useful results to another NHS consultant in another trust.

Doesn,t work that way says Betty nod,nod,wink,wink tell you what i will try to squeeze you in on an Ambulatory assessment in the next few weeks but you won,t get Spirometry or CT that we would normally do for our clients.

Oh many thanks state I,do have a nice day and by the way can i have Scruffy back please as i believe she is in Trauma and i need to bandage her left ear.

Don,t you just love our joined up NHS.Keep smiling me and the cat are off into the garden for a conference call.xxx

[sassy59]

You didn't expect hospitals to talk to one another did you? Oh no they don't usually do that. Mind you, l think Pete has found some co-operation between the Brompton and Worthing so he was lucky.

Hope Scruffy is all patched up now. Take care xxxxx

[mrsmummy]

So many on here only need oxygen when mobilising. I cannot understand a policy of only assessing those already using oxygen when at rest. So you will now have to wait until sent for again? Why not give the BLF nurses a ring on 03000 0300 555 and see what they can suggest?

[skischool in reply to mrsmummy]

mrsmummy,thank you for your support and advice,i have read reports that similar trusts around the country have adopted this approach,however given that i have a semi promise of an assessment via a backdoor route and that i also have an appt in July with a renowned respiratory hospital i will give them a little space to react before i pursue the matter but as suggested all assessments and tests would be useful to present to a consultant regardless of their source within the nhs?

[Billiejean_2]

So what did Betty actually do then ? Blood gases ? I hope she didn't accidentally forage for blood in Scruffy's ear but to be honest, I wouldn't be surprised if she did. And did she tell you if she would be recommending LTOT for you ?

Our health service leaves a lot to be desired but from what I read here about the NHS, it's definitely not the worst. But maybe we could forgive them if they supply the trauma counselling for Scruffy.

[skischool in reply to Billiejean_2]

Scruffy a bit like my Sats bounces back for fun.Blood gases taken but details disclosed were minimal.As usual i was borderline for LTOT and quite frankly i have no desire if it is not neccessary to sit hooked up to O2 for 16hrs a days as in my case it would be unproductive .My need and Scruffys is to exercise to improve our health and lung function but without doing so while desaturated to levels that will harm our organs.In Scruffys case that is her Felix food belly.Anyway she is over the trauma and deep in a good as it looks doubly delicious dream sequence.xx

[Carnival567 in reply to skischool]

You seem to be having the same problems as I am! I do not see the logic of testing for LTOT when you only desaturate on exercise, which in my case can be walking across the sitting room. They say only if you have LTOT and exercise more, but how can you exercise if you desaturate so that you feel as though you might die? The world has gone mad. I have just managed to get a letter from the consultant saying that I probably need ambulatory oxygen and that since I don't have COPD the criteria are different and will they please get on with it! See the GP tomorrow, so hope he will mediate between hospital (English) and nurse (Welsh) . Talk to each other? Why should they do anything so silly? Gosh, things might get done if they did, and then where would we be? Hope you get it sorted out! Is Scruffy all right? She is probably far more use than Betty! Good luck xx

[Magpuss]

Oh, I had hoped to read a gleeful account of a successful assessment - sorry it didn't turn out that way. You still managed to amuse though - just love the idea of a fold up corridor, and I'd love to see how you got on while bandaging Scruffy's ear......wonder which bits you'll need bandages for when you've finished🙀😾🤕.

[Bevvy]

Absolutely ridiculous. I know of lots of people who only on oxygen when moving. That was whole point of assessment. Plus from what you told us you obviously desaturated quickly so don't need formal exercise test. She could just have asked you to move about a bit!!!

[skischool in reply to Bevvy]

Its rocket science Bevvy i have consulted with Scruffy cat and we have taken unanimous decision to put off moving about for a bit.that way we can not desaturate but we may well just disappear?.ho ho

[O2Trees in reply to skischool]

[O2Trees in reply to Bevvy]

He would need the standard 6MWT test Bevvy as it would show how many litres per minute he would need. "Moving about a bit" wouldn't give accurate info.

[skischool]

Bevvy you wouldn,t want to see me moving about a bit,its not a pretty site,not going to be invited onto strictly whatever it is some time soon.xx

[Offcut]

I know just what you mean I am okay just sitting down it is when I do anything that I can get out of breath. They stick the meter on my finger after I am rested and then base my life on that! Then they see that PR have deemed me exercise intolerant? Any one that deals with outside of the appointments such as in A&E etc. they always ask what level of O2 am I on?

Hope you get it sorted soon?

Be well