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!
Kate
xxxx
Written by
KateMoss
To view profiles and participate in discussions please or .
Where i am there are two local hospitals which causes a lot of confusion as they both do different things!
The one my consultant is based at has a respiratory nurse attached who i can call anytime-its an answerphone when she isnt in the office. She is fairly good at responding too! I usually get a response quite quickly and she can then advice me over the phone or book me in to respiratory function unit within 48hours if she thinks its necessary. I also have an emergency admissions unit phone number i call to book a bed in advance if i feel i will need to be admitted!
Now the confusing bit....
The other hospital has an a and e unlike the one my con is based at! If i end up being carted off without prior warning or ive left it too late etc i end up there! The respiratory wards at this costa dont like to interfer with my con or my resp nurse so i never see the resp team here only the community team who became involved in my care last year! So when i am newly discharged from this costa i have the support of the community team for a few weeks each time aswell as that from my respiratory nurse.
Hope that makes sense! Its complex but as brittle asthma is not that common the community nurses here dont see it all too often and i was the first asthmatic patient they had ever followed up as they normally deal with copd!
I think most of us slip through the net at certain points depending on how independent you are etc!
Good luck with sorting the o2 out.
Talk soon lv kat Xxxx
Hi Kate
Firstly the community support, my local hospital run consultant and nurse led clinics for severe asthmatics and seperate ones for people with COPD so they are pretty good on that one; with consultants that have specific expertise in severe/difficult/britle asthma. As for community support we have a community respiratory team however they only treat patients wih COPD as an admission aviodance scheme, so the severe/brittle asthmatics sdo not have access to this service whch is a shame, so instead community support is offered from the district nurses and more often than not for severe/brittles they are appointed a community matron to help them at home if needed. Like where you live, mild and moderate asthmatics are looked afer by GP and asthma nurses at the GP surgeries.
Now as to home oxygen which I also have, in my area the oxygen is supplied by Allied, in order to get them to change the amount they supply etc you need to get either your cons or your GP to fill out a HOOF (home oxygen ordering form) form; on the form they need to state how much O2 you need and for how any hour per day on average. I like you use different amounts depending on where I am at, but I always use it at night, with the ability to use a limited amount in the day when bad, but that is set out in a protocol. In order to allow me this flexibility on my HOOF it states that I am on long term home oxygen and they filled it out for 6 litres for 24 hours a day. Whilst I don't use it all the time it does give me much more flexibility with use without forever needing to phone the company up, as a result of this type of useage I have both a concentraor, an emergency big cylinder in case of power cut and some smaller cylinders which I could use out and about or to give me more freedom. With the cylinders I just phone up and order more when needed and the concentrator got insalled by them and they service it, also I get money back on my electicity because the concenrator runs off the electric.
I don't know if this helps you at all, but since the newish oxygen ordering system was brought in this has made it much easier for me, if you can't get things sored it may be worth asking your con about a similar arrangement and see if they are happy to do this.
Hope that helps, anythin else I can help with just let me know
Libby x
I dont have oxygen so dont know about that.
Severe asthma and support in the community;
I have a lot of support from the long term conditions team. I have a resp nurse who i can ring up 8.30am to 5pm on weekdays and she will advise me of what to do and if she does not know she will contact my consultant who will then tell her what i need to do and give her the prescriptions i need.
When i came out of the hospital i have hospital discharge team for 6 weeks and now if i need help i can get the rapid response team to come and help me for a few weeks if i need it when i am ill.
I am also part of the practical activity leisure scheme, where you are looked after by people who help you to do sport based on your conditions, they are the people you get referred to in my area when the physio puts you on open appointment. They are great as they help you build up slowly but on the other hand know you condition can vary week to week.
I am also about to start getting help with supporting people, help to do things around the house, whether maintaining a housing thing or help out and about in town. (this more for my learning diffs than asthma tho)
Finally i am about to start a work prep scheme which helps you learn the ness skills for working and they start you gradually 2 hours a week and build you up to where you can cope without over exertion. (again more for learn diffs)
It has taken a lot of time and patience to try and set up but worth the effort!
Update - Concentrator has arrived! Phew, Will also be getting the conserver back next week too! .
Thanks for the support folks, it has been a long time since i needed help from peeps here!
Tired, will get back to folks later.... as long as concentrator doesn't keep me awake LOL! noisiy thing may end up in spare room!
Tanks
Kate & large glass of wine!
I seem to have the most wierd set up that is often time consuming and damned hard to keep track of. My Asthma is managed by the RBH I have 2 local hospitals that I can end up in both will call the RBH and get advice on care and sometimes arrange transfer to the RBH I have a ""named"" consultant who I trust at both who will look after me whilst I am in their care. My S/C pump comes from the RBH but my supplies come from the local resp nurse who I never see, I just call and order more stuff as I need it. My GP holds my HOOF which is a good thing as my bowel problem is actually helped by being super oxygenated so when we need to make alterations it is easy to do. I have another S/C pump relating to bowel problem and they supply the pump but won't fund sillouttes so I have to get my needles and syringes for that from the district nurses. I have over night NG feeding and my dietician supplies the NG tubes and the pump and my feed and giving sets come direct from the supplier (Abbot) after instruction from the dietician. Finally my sharps bin is collected by the local council so I need to call them to get it changed. Add into that OT's and Physios in the community plus carers its all a nightmare. For example before I went into the RBH I called Air Liquid to order more O2, I filled in rpt script form for my GP, I called my carers to cancel them whilst I was in, I called the feed people to make sure I had an extra box to take up to the RBH with me, called the RBH dietician to make sure they knew I was incoming, if they had the giving sets I use and what I could and could not eat, called the district nurses and ordered more supplies for when I got home, called the resp nurse for more sillouttes syringes and needles, called my dietician to order some more NG tubes again for when I got home from RBH, called my OT and Physio to confirm I was going to be away and finally called and arranged for my full sharps bin to swapped for new one. It can sometimes take half a day just getting everything sorted if all runs out together!
Kate, re O2 I was with BOC (Vital Air) and they were fabulous next day delivery if you needed new cyclinders named person I could talk to etc etc, since the contract change I am with Air Liquide and I need to order on a monday for delivery on a Friday. Also my liquid O2 that used to be changed by BOC every 2 weeks now requires a weeks notice to be changed, so I have to work out what I might be doing and how much the is left in the bowser. I wish I could go back to BOC, thankfully all the delivery staff are the same but to be honest its very hard predicting a week in advance what I am going to be up to and how much I need of everything.
Support
I’m very lucky and I appreciate this. My local hospital is smallish and has a team of respiratory nurses for patients with COPD plus two other general Respiratory nurses. I can ring the general nurses whenever I have any problems and they usually arrange for me to see one of the Registrars or Consultants the same day. If I’m an inpatient they pop along every day & join the Consultant rounds so they know what’s happening. They often turn up when they know things are not so good ‘just for a chat.’ I don’t go to Respiratory wards because of cross infection issues so they always have to go out of their way.
My GP practice is also excellent, there is a lovely GP who specialises in asthma (who isn’t my own GP) she initially sent me a letter to say asthma was her area of interest and her door was always open. She often rings me just to check all is OK after discharge. I have to admit I’ve never met her face to face but only because I’ve never needed to!
I also get seen at a large regional centre who are also very good!
These people make such a difference & to be honest I don’t know what I’d do without them.
SX
I couldn't be without my community matron who i cant contact via text phone or e-mail mon-fri, if she is off then one of her colleagues who all know me cover her. She has sorted out the flagging with the LAS, a home OT assessment, loads of appts to many to mention, if she visits and feels i need to be in she gets me a bed and takes me there (unless I need 999)
She has sorted a system whereby when im admitted the clerk will contact the kids school (1 less thing for hubby to worry about!!) and she is sorting out young carers for the kids.
I can call her and she gets in contact with relevant cons and can often sort problem or get me seen sooner.When im in she comes and checks that all is going ok and will got to shop if needed and sorts out any issues.
My Gp is great i can call and 99% of the time i will get a call back with 10 mins
At my local costa my resp con and nurses can both be contacted by phone but my renal, and cardiac guys are more illusive but i do have direct access to a cardiac bed if im not coping. I don't kno about severe asthmatics but my resp team only have 3 brittles on their books.
As for O2 i tend only to drop my sats as im going off so i don't need it but it has been considered to get me home sooner -time will tell.
Thanks all for the information - brain still fuzzy but begining to make sence of things, though very varied!
Kat, confusing! Perhaps centralising departments could be a good thing?? eg a&E on same site as Resp wards.
Libby, COPD pats here have the addmissions avoidance scheme with the COPD / Resp nurses. I do have a distric nurse but don't know her and she probably wouldn't have a clue about BA, even my GPs asthma nurses pass the buck!
O2 - sorted now. I did go through the HOOF proceedure when it came in but it is obviously inflexible. When I wasn't using much portable o2 they asked for the conserver back. Now they are sending me a new one and even offered me a trolley! LOL I declined saying the back pack is more fasionable! LOL
Now got a Concentrator - just a few odds & ends to sort like long tubing with fire breaks for the cylinder so I can use 8lts when bad and get to the door. Need to check they will still send me variable rate cylinders for emergency use!
Plumie, you are very lucky getting help from a resp team. And good that it is not jjust medically orientated too eg getting back to social things!
Bex! Do you have any time to live?? Yours seems complicated but at least you have help even if from a number of sources. Pitty they can't pool the resources and you get all the medical stuff from one supplier ( One good thing in Essex is that I get all my medical s/c bit and OT stuff from one central place) My sharps bins are dropped off at the surgery in passing. I think there is a pick up system but not investigated it. Though I would be loathed to leave it on the doorstep for pick up, however niceish the area is where I live.
ST - small is obviously good and you have access to Respiratory nurses. Do you use s/c or O2?
Kirsten - you have fantastic support from a community matron, which I completely lack. I don't bother my GP if asthma unstable as I alwasy know the answer - hospital, though I do see them if just a chest infection brewing....
I was initially given O2 at home to keep me at home and for better quality of sleep at night.
Anyway, I will now pursue the line of a one point contact to get things sorted out. It was so frustrating that it took half a day to get the oxygen issue alone sorted with not knowing who to ask and then which ever number I rang, I hoped someone would answer. I could have easily met obstacles all along, eg passing the buck or answer machines and got nowhere! I will now speak direct to the resp team at the hospital because I discovered that they do have me on file and know me! Now why wasn't I informed in the first place.
I suppose that i have used my initiative in the past and managed to sort things myself but it gets to a stage where you think why should i spend all my time getting stuff to improve my quality of life when all I do is spend it sorting etc etc ( going round in one large circle!)
I have now compiled a page of numbers in red in my Filofax for all the med stuff and first points of contact. I will also create a flow diagram so I know who to contact first for each issue!
Thanks for your support folks and hope all this makes sence!
Kate AKA bear with fuzzy brain.............
xxxx
Kate you know the hardest thing is making sure everything ordered and arranged happens, for example I ordered NG tubes on wednesday - well I left an answer phone message they have not arrived yet, I don't have a spare atm so if this one gets blocked or I randomly pull it out, which I did the other day no idea why but I managed to switch off the pump pull the tube and leave it all neatly on my bedside cabinet for me to enjoy when I woke up. I must have done it but I have no recollection at all and beleive me pulling a tube is not something you tend to forget. Anyway back on topic the NG tubes have not arrived now I need to remember to chase the dietician for them, I am also running low on butterfly needles I have once again left an answerphone message but so far no sign of them. I could cope if all I had to do was call leave a message and it all happened but its a nightmare having to keep track of what has arrived and what has not.
Hops, I wish I had a community matron, although I suspect a logistics expert would be more appropriate.
Oh and just to add insult to injury I now have to have ABG's done every now and again because my gastro team use the levels of something other than O2 and CO2 for their own diagnostic purposes its not bloom'in fair.
Oh Bex, nothing is simple! Hope you get your NG tubes. In the past I had to resort to the ward to get stuff, but always ensure I have enough stuff. The only think that can run short is the sillouettes but I try to order well in advance so Med supplies can order them in as they aren't kept in stores standard etc.
ABGs - that isn't nice!
take care
Kate
Bex - hope u dont have to wait too long for tubes/don't pull it out - how about lots of extra tape on face at night!!! As for the logistics expert i need one to juggle all the appts plus the kids daily life!! In the next 3 weeks i have resp, cardio, renal, gastro and ortho appts with various cons as well as diabetic nurse, and OT, 2 parents evenings, my birthday , a funeral and our wedding anniversary!!!
Just hoping that all systems co-operate to enable me to go to all!!!! good luck with tube.
Kate - how did u get on with the concentrator at night - hope it wasnt too noisy?
Concentrator got moved from hallway to the spare room, though did leave the door slightly ajar. I don't really notice it at all, though I had a thought 6am yesterday morning that I may be distrubing my neighbour. I asked her and she says she can't hear it - phew! Have noticed that it does have a crack in the casing...... not me!
I will still persue a quieter one though because if anyone comes to stay, it will have to go back in the hall or poss the lounge!
It is working fine and had a fairly reasonable night last night bar the usual nebs.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
severe asthma , adrenal insufficiency 
Update: Severe Asthma (Eosinophilic) & Clinic referral & Fatigue
Does asthma severity tend to reflect that of sinuses?
