I say, sometimes a little bit of communication goes a long way.

Following my recent let-down from Allied, where I was left waiting for delayed delivery after delayed delivery, I sent off a “strongly worded letter” to them and got an almost immediate response.

Now, there’s two parts to this story – a personal and a “professional”.

No sooner, it seemed, than Allied had received my letter, they were in touch and full of abject apologies for the confusion and the misunderstandings.  And, in fairness to them, it was a very genuine and “un-corporate” apology, too.

Having explained in my letter that I can’t really carry their PD300 cylinders comfortably and really need the lighter weight PD430s, they straight away put me onto a fixed weekly delivery, commencing this Monday, of 6 PD430 cylinders to last me the week (which is more than enough) and they will continue to arrive every Monday unless I phone them to let them know they won’t be needed.

I have to confess, I’m over the moon.  To finally have access to the right amount of truly portable oxygen in quantities enough to last me a whole week of doing whatever I please is fabulously free-ing.  I’m looking forward to a new ability to do what I want by myself without the oxygen-planning issues I’ve had up to now.

What concerned me, though, was that my “solution” with which I’d been provided was a panicked stop-gap to “shut me up” and get me off their backs.  The cynic in me was squirming at the thought that if I was contented then I’d stop writing letters which get copied to the CF Trust and Department of Health.

It was important to me to make sure that it wasn’t just me that was getting the best of the sevice, but that other people in my position who weren’t so willing to speak up, or didn’t know there were other options available, can get the best, too.

To my immense surprise, and no little pleasure, I discovered that far from “fobbing me off” with the appropriate organisation, the team at Allied are really keen to improve their service and get things working as they should be – and to involve me in the process.

Already I’ve been told about a new cylinder they’ve aquired which is not only lighter than the PD430, but lasts longer, too, and it is Allied’s expressed intention to prioritise the CF community with them.

PWCF are, I think, a unique breed among oxygen users in that they are the youngest and most independent of the type of people who may need home oxygen therapy.  At the same time, they are often the smallest and weakest of the lot, too, meaning that the “portable” oxygen tanks need to be pretty light to really be “portable”.

Allied seem to have taken this on board and are working hard to identify PWCF among their patient lists to make sure they are the first to benefit from the new cylinders.  All GPs who prescribe home oxygen are suppose to add a code to the order form to indicate the medical condition for which the oxygen is being supplied.  Sometimes this doesn’t happen and Allied are unaware of a patient’s CF status.

For this reason, if you’re reading this and you’re a CF patient who receives  oxygen from Allied, you should email Sue Brooker at communication@alliedrespiratory.com to make her aware that you have CF and that you would like the light-weight cylinders.

Above all, communication is the key here.  I am actually really confident that Allied are doing all that they can to improve things at the moment – and I honestly never thought I’d see myself writing that.  But if they don’t know a person’s needs then they can’t do their best to deal with them.

As with many things in life, communication is vital – making sure everyone’s on the same page and that people can get the things they are entitled too, whether it be oxygen, money, services or anything.

Every good relationship thrives on good communication and this experience has taught me a lot about how little is needed to make a difference if you just talk to people.

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