Six months ago the physio who comes to our house said that the Acapella would help my husband with his gunk and help him to cough it up, she said it would cost £70, we told her no problem anything to help would be great.
We did not hear from her or could contact her for weeks until she came to the house and said the Acapella was now free.
She asked the GP to do a prescription which was refused by the chemist as they said it was not free. The physio said it was and so did the respiratory team at the hospital. so the GP did another prescription, which was refused again.
I decided to go into the chemists myself and find out exactly what the problem was as no-one was taking it further. The chemist told me it had to be hand written and that is why it was being refused. I said why wasn't I told that four weeks ago when all this started.
I went to the GP myself, and asked for a hand-written prescription, took it back to the same chemist where it was refused again, I asked him if he was taking the mickey and enjoyed seeing me run backwards and forwards.
I rang the physio again and all she said was, oh, well you can't have it then can you., you will have to have something else.
This is what we are up against. I am sick to the back teeth of uncaring pratts.
I still do not know what is happening, as I do not know what that something else is' as the physio cannot be bothered to come and see us or even lift up the 'phone. When I ring the Respiratory team I am always told, she is in a meeting and will ring you back, she never does.
No-one gives a damn, I feel like making an official complaint about everyone concerned. I am 70 years old, and honestly do not know how people manage if they lived on their own, I am fit so can run around for my husband, but if I wasn't here, he couldn't do it, and would be totally neglected.
I thought the Respiratory Team was supposed to help you but not in this case.
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Sounds as if you are being messed around, and if you are not satisfied, contact PALS to ask for help, or to tell you who to contact. PALS, I believe, stands for patients advisory liasion service. I am interested in this acapella myself and going to ask about it.
I know how you feel Sweetthing - when my husband (with IPF) was discharged from hospital in mid-October I was told he needed to be on oxygen 24hrs a day, 2 litres per minute. Dolby wouldn't let me have more cylinders for going out (restricted to 2 a week, 6 hours) so I asked how to get more. I was told the hospital had to change the prescription - they said it was up to the GP now. Dolby refused to accept the GP prescription. Eventually I was told the Respiratory team in the community was in charge.I phoned them - they said the hospital did the prescription and they couldn't change it. I phoned the consultant's secretary who said to get the GP to fax over the details, which was done. Nothing, ziltch....then 5 weeks after discharge a respiratory nurse came tot he house. she said, and I quote 'I can't change the prescription or you could sue me. He's only supposed to have it for 16 hours a day so you don't need any more'. I asked when precisely he was supposed to be off oxygen - no reply. If I take him off his sats drop to 85 just sitting, and 77 if he moves about. She then had a call from the consultant - who agreed it was needed 24hours. All smiles - how much do you want ? We now have liquid oxygen for going out - which is much better. Last week, on O2 he was assessed for PR - only managed 60yards in the 6 minute walk test due to sats dropping to 85 and not coming back up within the 6 mins. I asked if we could increase the flow during exercise but they couldn't really advise - hopfully will find out before the course starts! We are seeing the consultant tomorow, so I feel some questions coming on !! As I pointed out, making a prisoner of him makes a prisoner of me - they seem to think all you want to do is sit around and wait for the inevitable. I feel its all about quality of life now, not quantity, and if he wants to go out we go ! I'm getting muscles on my muscles pushing the whellchair, mind .
How are things now with your situation Sweetthing? Are you still sticking to your guns or have things gone back to how they were before ? Take care
Hi and thank you for your comments, it is a darned mess isn't it, the left hand does not know what the right hand is doing.
My husband was on 4 cylinders to be used when walking about and we found them sufficient, this was ordered by the physio who comes to the house, (she told us she had the right to order them if she wanted to not the specialist). We went to the hospital Respiratory clinic to be assessed for piped in oxygen 16 hours per day, which they think he may not need as he is on the borderline, but when he exerts himself without oxygen his sats drop to below 80 but on oxygen he is stable at 89 so we go back in three weeks for the verdict.
Yesterday, without our knowledge, another 4 cylinders were delivered and 4 small ones with a conserver which he can use when he is out and about and they last 7 hours and are lighter than the bigger ones.
We now have 8 large cylinders and 4 small ones in three boxes tucked away in the dining area, goodness knows why we have got all these cylinders, if we have a fire the damned house will blow up and take the street with it. We don't mind the 4 big ones and 4 small ones but 8 big ones is a bit much, I could stand all the three boxes side by side and throw a cover over it and use it as a small table, ideal for Christmas.
The physio who comes to the house hasn't been seen for god knows how many weeks, she is unavailable for calls, I leave messages she never rings me back, she was supposed to come to the house and help my husband with exercises as he cannot get to the Pulmanory Rehab clinic but we have not seen her for ages, he cannot use this small tank with the conserver attached as she has to check his sats when he is using it to see if he is getting enough oxygen with it as it is not free-flow.
I have said this before, if he hadn't me to sort this out he would be left to his own devices and it is just not good enough.
Hello Sweetthing, Have you informed the firebrigade that you have oxygen in the house? If you ring your local headquarters (not 999) they will arrange to come and do a safety check and fit extra smoke detectors if you need them (free of charge) they will also add the fact that you have oxygen to their database, so that should anything happen they are prepared. Won't the respitory nurses arrange for you to have a concentrator for oxygen in the home that would be far more sensible!!
Yes, the fire service have been and put in extra smoke alarms. We are going back next month to the clinic to see if he needs piped in oxygen, she has discussed the concentrators but if he does not need it 16 hours a day he will have to stick with the cylinders.
Sorry Gill, forgot one thing. Grumpy is still alive, we have no central heating since ours broke down so needs replacing and he says we can't have it replaced as he can't do with the hassle so we have convector heaters in every room and it is costing us a fortune. We have no hot water on tap I have to use the immersion heater.
He is still demanding, get this and get that, I know lots of naughty swear words and threatened him with the oxygen tank yesterday. I told him I would stick it where the sun don't shine if he didn't keep his mouth shut and I would use the big one not the small one.
He is literally wasting away before my eyes he is stick thin through lack of exercise as he comes downstairs in the morning, sits all day then goes back at night, that's all he does. He uses the male urinal next to him and times his other bathroom habit until the evening so he doesn't have to walk unless he has to.
I spend a lot of my time in the front room watching films on my computer with my headphones on, and if he sees me through the glass door walking about he calls me.
We are spending Christmas at home because he won't go anywhere. My sons are coming in the afternoon with our grandchildren to open their presents so I will see someone then, all being well, if I can get him off his backside we are going to our other sons for boxing day, depending on his health.
I was so annoyed with him the other day I told him that he was a waste of air space,
I hope you have a lovely Christmas and a very happy, healthy new year. xxxxxxxx.
Oh Sweeththing - just when it looked as if you were getting somewhere ! I am lucky mine isn't as grumpy as yours, in fact he keeps a remarkable sense of humour, but is still infuriating at times. He insisted on having a dimmer switch for the 4 sets of wall lights in the lounge - then he decided it needed to be remote controlled switch, which he got on amazon. Our poor son-in-law gets talked into doing all these things.Now if you have all the lights on and use it they all go off until someone (me) climbs on a chair, trips the light circuit switch and turns it back on a gain. Grrrrrr! Makes it difficult to leave him on his own in case he fiddles with it and ends up in darkenss, or even worse no electricity, bearing in mind he's on an oxygen concentrator.........I too find I can't just go an do something aorund the house, if he can't see or hear me he's wandering around 'where are you ?" Bless...... My daughter, son-in-law & kids (12 & 8) are coming over on Christmas Eve and will stay for several days - I have told them that this year I expect some help - there will be a draw, and they will have to perform the chore on their ticket! That's the plan, it remains to be seen whether it works.
You are lucky. I cooked Christmas dinner for 45 years non-stop, and got no-help at all, in fact they all went out for a Christmas drink to the pub, girls and all and left me on my own. When the grand-children came along, they left them with us Christmas Eve all night whilst they went out on the razzle and I had a Christmas dinner to cook with a 6 month old grandchild and toddlers to get washed, dressed and fed.
This year because I was 70 and my husband was ill I said enough is enough. I haven't the energy to do it so it is my turn now to be fed and watered on Christmas day. Then, my daughter-in-law said she didn't want to cook Christmas dinner and they were going to an hotel, my husband will not go as they have picked somewhere out in the boon-docks and parking is not near hence the reason we are on our own Christmas day. My other son and his wife are having her mum and dad and her relatives over for Christmas day so there is no room for us. I feel so bitter about it.
I can't believe that I have got to 70 years of age and have never had a Christmas dinner cooked for me.
I wish I could go back 50 years and change a lot of things like putting my foot down and stop being a mug for everyone.
I hope you have a lovely Christmas and a happy new year.
Sounds as if you are being messed around, and if you are not satisfied, contact PALS to ask for help, or to tell you who to contact. PALS, I believe, stands for patients advisory liasion service. I am interested in this acapella myself and going to ask about it.
We are going back in three weeks for another appointment so will ask about it then as no-one at the GP's, chemist or even the physio seems bothered that all the information about free Acapellas on the NHS is incorrect. We were only at the hospital on Wednesday for my husband to be assessed for piped in home oxygen and she asked us if we had the Acapella and we told her it was on order. She told us they gave them out at the hospital, we will ask her for one when we go back in January. 6 months ago the physio who comes to our house told us the Acapelloa is better than the one called Flutter which IS available on the NHS. trust the NHS to give rubbish ones out free.
This is totally unacceptable. Good idea to contact PALS. Do you have a consultant or do you see a community respiratory team? Many bronchiectatics are given them by the respiratory physio at the hospital, but by no means all.
An idea might be to telephone your local hospital and ask to speak to a respiratory physiotherapist and explain what's happened and ask for their advice. Depends who you get but you may come across someone with common sense who will try and help you. Worth a try.
I have put up a couple of links of company's where you can obtain the Acapella Choice (which is the model they would give you in hospital). By the way it doesn't cost £70, it's £50 odd quid. If it comes to it that you have to get your own please make sure you download the VAT medical exemption for which you have to get signed by medic (sorry yet another trip for you!) Hope it doesn't come to having to get your own, but may well be very beneficial.
Did that today, I rang the Respiratory team at the hospital and you would never believe what happened. I asked to speak to the nurse we saw on Wednesday, I gave the name and was told she was off today. I asked who I was speaking to and she said one of the respiratory nurses. I asked her about the Acapella, and do you know what she said, 'what's that'.
We saw the specialist the day after and told him the physio was prescribing an Acapella and he said the same 'what's that'.
These are the people who specialise in COPD and have no idea about the medical apparatus that is out there.
I am disgusted and frightened about the care we are supposed to be having.
Just another thought you could ring another pharmacist and ask if they would accept a prescription from your doc and in what form. Pharmacist you have sounds a bit rubbish. The one I go to would ring the doc and sort it out himself, but he is not from a big chain just a little independent chemist who really deserves custom.
Astounded your resp nurses hadn't got a clue what you were talking about. Less shocked your consultant didn't know. It really is the territory of the respiritory physiotherapists. They're the ones I would speak to. Blimey as I have learnt from past and present experience, you have to be fit to be unfit all this chasing up you have to do.
Hope you have better luck - you could do without all this hassle.
I find it increadable that your Physio did not just order you one, as you were prepared to pay for it.
My Phisio obtained mine for me whilst I was in hospital in 2009 it cost £40 then. No prescription was required she just ordered it through the Dept & I paid by cheque to the Thorasic dept
I am astounded that your respiratory team do not know what the accapella is for!! My Physio works with the consultant & Respiratory nurses as a TEAM.
I think you should complain to PALS.
Best wishes
Jo
Our physio, 6 months ago told us about the Acapella and told us it was £70, we told her to get us one, and we never heard from her for nearly three months. She then came to see us and said they were now free on the NHS and would order one for us., hence the mess we are in now as all the chemists will not touch the prescription as they say they are not free.
I tried contacting her and leaving messages at the Respiratory Team office telling her we would buy one but she never, ever rings back. This is why we found out when I rang the Respiritory team at the hospital that they had never heard of it, neither had the specialist.
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