Morning all it's a bright crisp October morning in London and I'm sitting having my coffee in the garden - so still no news on having this I have been on the list more than three years and I said to the nurse on Friday why in this borough is it taking so long!!! I told her I thought my Copd was getting worse especially as she swapped my spireva (stating that some people had difficulty piercing the capsule) to another but I told her it wasn't helping me so she's Put me back on spireva telling me that's spireva is a steroid inhaler-and the other one isn't 🙀 I give up she seems rather all over the place and tells me my Copd will get worse rather than telling me why I can't get on the pulmerony rehab course!
I then ask to have my emergency pack at home because it takes over 48 hours to get it if I feel I am coming down with something and she's like - well we don't like to do this because people are abusing the system - I actually demanded she gave me one and realised I need to demand with this nurse as I won't get what I want! I ended up saying I know a lot of people have gone on the pulmonary rehab immediately or within two to three weeks and my three years or so is not acceptable!! We will see
She's sending me off for a chest X-ray and bone scan - any ideas why a bone scan???
Confused with the nurse dot com x
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pepparuby1
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3years is totally unacceptable for a waiting list for rehab. she is being ultra cautious in requesting a bone scan but taking steroids can cause thinning of the bones. Tell her it is common practice to have a rescue pack of steroids and anti biotic a
Hi good morning to you. That is a long time to wait for PR hope you hear something soon. I have been on 3 courses so far. But never had to wait that long for a referral. Most people go for bone scans if they have been taking steroids for a long time it is just to check for ostioperosis. One of the side effects from steroids. Not everyone gets it I have been on steroids since 2006 and my bones are okay. Take care xx
Oh dear, your nurse really needs to have some more training. Spiriva does not contain any steroid. It's only drug is tiotropium. This is a slow acting bronchodilater which gradually opens your airways over 24 hours. It is not a rescue inhaler. All of that info is readily available on the internet. Your nurse sounds as though she thinks that her patients are incompetants and is flying by wire with her information. Mind you, our respiratory nurse cannot even say bronchiectasis, which is what I have. see your GP about the rescue pack. If no luck there insist on going to your consultant and they will tell your GP how to treat you. I'm afraid that most of us find that we have to educate ourselves about our conditions and then nudge our GPs into cooperating. Good luck.
Helo pepparuby
This is atrocious. I do not think your nurse actually knows what she is doing! Long term usage of steroids can thin bones so that is a good thing if you are going for a scan. How can you abuse the system if all you need is a rescue pack. You are right to demand it....saves putting extra pressure on the NHS if you know yourself when you need to use it. sigh...
P.R. is great, and the benefits are great too so I do think you are either going to have to put your foot down to make sure that your body is looked after, or change the surgery for a more helpful nurse.
Good advice on here. Lets us know how you get on ? I wish you well.
It is so difficult to cope with professionals who think their 'knowledge' gives them power & authority over patients . Clearly this nurse needs to do a course, if it were me, I would telephone the pulmonary rehab Team. Usually they will be listed on the Community health Services Website. If you don't get a satisfactory answer there , you could telephone your CCG and ask what services they are commissioning & what is a reasonable waiting time. My first PR seemed to take forever coming through. I telephoned the PR team to learn I was not on their list. I went to see the nurse who said sorry, I have run out of referral forms; what 18 months out of forms? Fortunately, I had seen the link to rehab form downloads. Technically, she could not run out of referral forms as they were all on line. I sat there until she competed one for me. Similarly, my Consultant was asked by the Surgeon to refer me to PR, following a Lobectomy. He is a nice man but he said, he could not do that, it had to be a Nurse or GP. Mmm.I was told on the quiet, when there is a choice of professionals who can complete various forms, his stock answer is he is unable to do it..
I hope you get sorted soon; don't let the confused Nurse deter you in getting what is in your interests. X
That is shocking. I must say I wonder if the nurse has actually referred you? She seems, to put it kindly, rather dippy if she thinks Spiriva is a steroid, which as SS63 says above, it is not.
I am also surprised that she is sending you for a bone scan if you have only had occasional steroid use, but then again if she thinks Spiriva is a steroid......!
You don't say whereabouts you are, but if in the UK I cannot believe anywhere has a 3 year wait for PR. I would phone your local hospital Physiotherapy department & ask them what the waiting time for getting on a PR course is. If it is 3 years then at least you know she is telling the truth. But if that is the case, I would be contacting my local MP & asking why it is such an inordinately long time.
If you find it is less than 3 years, at your appointment with your GP to ask for a rescue pack, enquire about doing a PR course. When he/she tells you "Nurse ... sorts that", you have the opportunity to tell them of your concerns about her.
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