Ive been struggling with Sob for the past two weeks. Maintenance inhaler Trelegy doesn't seem to give me relief. Booked an appoinment with COPD nurse for assistance as I'm exhausted with struggling to breathe.
At the appointment COPD nurse said I should speak to the GP . She offered to change my inhaler but didn't check any of my stats. I think my question is what does a COPD nurse actually do? Feel so frustrated at being so tired.
S/he might might be a nurse but not a respiratory nurse. Youre unlucky., there are some great respiratory nurses out there and some very poor ones. Youd better make an appointment with gp ASAP so you can have your chest listened to and sats taken. You may have an infection brewing.
I have a Respiratory team and a COPD team who are amazing. The Respiratory team work with my Consultant. I can phone them anytime and they will call to my home if I request. During my recent hospital stay I was in a different area to my my local hospital but they even called to see me there and are in contact since my discharge. Ask your GP for your local Respiratory teams tel no. Hope it gets sorted these nurses are amazing and are so knowledgeable. Take care xxSheila 👍🤞💕💕
I feel your pain. My copd nurse is lovely but useless. I ended up doing my own research about inhalers and preventers and actually suggested one to her which has actually worked a bit better for me. Honestly you couldn't make it up
After a small blip last Sunday involving paramedics but no hospital I was surprised to receive a call from my surgery inviting me to see our respiratory nurse. Apparently this is a result of the out of hours doctor contacting them as there is a respiratory clinic every Tuesday which I have never been told about. True, the appointment is six weeks ahead but totally unexpected so a bonus.
Please let us know what happens, I too am on Trelegy but so SOB these days it is awful.
Was told it was the best on mkt about a year ago.
PS Your current SOB may be an exacerbation, may just need antibiotics and steroids, then a few weeks to get back to normal ?
I've been on Trelegy for a number of years and its always worked brilliantly. And yes I was told by COPD nurse its the best on the mkt too.
I'm going to try and book an appointment with the GP next week. I'll try and get referred back to respiratory consultant who signed me back to my local surgery beginning of the year. It maybe as you suggest an exacerbation. Many thanks for responding to my concerns
Hi Mary,
Some respiratory nurses are very good, but others aren't. The new one had my GP surgery, telephoned me for a respiratory review. She was terrible and I had 2 phone calls with her. She insisted I was too young to feel how I do and registered everything badly on the COPD assessment questionaire. She also wrote down 1 excerberation instead of 4 etc. etc,
I rung the surgery up and had the feeling that other people were not too happy. I had another respiratory review with an ex COPD nurse, who has become an advanced nurse practitioner - she was very good!
Maybe see if someone else is available, with more experience. GPs are not always wonderful either!
I have to say your experience is very common Marymary13, but in other places they have community respiratory care teams who can come to your home. I am registered for community care which means every illness as to be reviewed every year meaning you see your GP more often than you may feel you need in order to hopefully keep you out of hospital. One of the surgeries near where I live has a chest clinic because we are so far from the main hospital. Many nurses at surgery , also GPs are not specialists in a particular health issues merely trained to pick up abnormalities that might suggest you need further investigation. We are now moving forward to diagnostic clinics in the community, rather than just general care .Health care will be different in future. So the best option for you is to see the GP at present or speak to them on the phone. Best wishes.
I’m on Trelegy & don’t feel it’s helping me, I had sob too & saw the doctor & a nurse a while ago & had a CT scan done & X ray as the doctor thought it was cancer, but fortunately wasn’t, when I was called for a review the nurse I spoke to said there said there wasn’t any more they could do for me & wouldn’t be changing my inhaler, so I carry on with it because I haven’t anything else to use, don’t have a respiratory team unless it’s the COPD nurse I see once a year 💐💐😊 xx
See the dr if u want another inhaler to try x
I had done an e consult online, spoke to the doctor & he recommended the nurse , so he won’t go against what she has said x
Raise the matter with your PPG (Patient Participation Group). I was on Trelegy and it was useless (for me) - but the GP swapped me onto what I had before.
Thank you, I will 😊
So sorry to hear these stories I thought it was just my nurse was like that I am also on trelegy and got told there wasn’t anything else they can do for me feel my inhaler doesn’t help either
Thank you for your comments. Well, I'm not going to accept the poor consultation with this COPD nurse. I will book an appointment with my GP to check if I have the start of an exasperation and then ask for a review of my in halers with either the respiratory team or consultant . I think we are all entitled to decent care and feel we are just being fobbed off with poor care. Will keep you updated. Go well everyone
Hope you get better care from your GP
Hi there Mary13.I’m new to this site on lung conditions.I have been diagnosed with Asthma a few years ago,but after picking up some form of virus my breathing has deteriorated.after an emergency nurse appointment was put on antibiotics and steroids.an e X-ray showed some infection .No improvement was given more antibiotics.Another nurse changed my inhaler.Another chest X-ray showed my infection to worsen.The nurse has only just referred me to a specialist that could take months.My breathing is terrible and I’m not eating.I’m just so surprised in this modern world help is so little and seeing what’s ahead of me gives me dark thoughts.sorry for this letter I just need a little bite of positive thinking xxxxx
Hi Hodgey58 so sorry to hear you are struggling with treatment for your chest infection. Can you not speak to or see your GP and submit a sputum sample so it can be tested to see what would be the best antibiotic for your infection. I'm not an expert on asthma but please don't feel disheartened. I have been treated by some brilliant respiratory nurses and consultants in the past. Also a lot of people get referred to pulmonary rehab via their GP and this is brilliant as it gives you so much support and advice.
So please start with your GP. It will get easier. Take care
My question exactly!!!!!! Raigmore COPD nurses said that the COPD nurse here in Nairn would take care of me. First time I asked her about a new maintenance inhaler. She said didn't know best I go back to COPD nurses at Raigmore. So now have no COPD nurse at all!!!!!!Blessings and love xx
I first met the COPD nurse at my GP surgery last November even though I was diagnosed 10 years ago. She had a chat with me and checked my inhaler technique asked if they were any problems and I said no. Earlier this year I saw the hospice physio I has a long chat with her and she checked my breathing technique, inhaler technique and recommended Oramorph. She then wrote to my GP who prescribed the Oramorph, I will only see the hospice team if I ask but my GP nurse said she will see me again this year in November, we shall see!
Hello Marymary13
Would you like to call us and speak to one of our Clinical Team? They can talk with you about your SOB, medication and advise you on what support you can ask for with your health care professionals.
If you are in the UK, give us a call on 0300 222 5800.
We are here to help on 0300 222 5800
Take care
Helpline Team
first visit to my local COPD NURSE
Withholding of Consultants diagnosis from patients by GP!
Follow up GP surgery 
very confused
