I know this topic has been discussed in dribs and drabs in the past.
I know that different Health Trusts have different policies on who gets support in the community from a respiratory team, hosp resp team, district nurses etc.
In my Trust, there is a Respiratory Team based at my local hospital but they are only allocated COPD respiratory patients. Mild to moderate asthmatics are or should be covered by GPs, Asthma nurses / clinics at their local surgery. There is no firm support for Severe / difficult / brittle asthmatics!
I have no real point of contact bar phoning the hosp ward, med seccretary for my consultant etc. I am listed with the Respiratory Team at the hospital because I have home oxygen but there the support ends.
I have a named district nurse for my s/c supplied but then, have never met her!
Us severe asthmatics in my area seem to slip through the net regards support - apart from each other!!!!
I was wondering what support is in place for other people under different trusts???
Leading on to.................
I have had problems today with Vitalair (BOC) oxygen suppliers as I don't fit their protocol of regulated oxygen use!! They are saying 8lts for one hour a day!
Now, How do I persuade my lungs they can only be asthmatic for an hour a day?
I use 4lts at night at the mo, I can't suddenly wake up and think, I have used my hours quota and turn the O2 off. They say I have enought O2 for the weekend - one cylinder - which could only last 2 nights......
To get any wheels in motion, I have phoned my GPs, they gave me a number which turned out to be my cons secretary number, tried ward, they gave me the resp team number (never had that one before) Resp team now trying to sort this out!
I don't use gallons of the stuff, just enough to get some quality sleep inbetween nebs at night and perhaps a bit during day if over excerting myself!
Otherwise, I use 8lts when I am going off and waiting for the paramedics.
anyway, rant over!