Lack of care

I feel I am being let down. I was diagnosed with severe emphyseyma fev 33. High pulse rate 125+, constant sleepless nights. any activity like putting out washing or loading or unloading washing machine causes my sats to drop between 57 and 75 regularly.

I have tried all this year to discuss this with my doc just to be told there is nothing they can do.

I am taking seretide 500 and braltus 10mg.

In January I was referred to a lung specialist who took away my seretide and did not replace it. As I felt I was lacking the 12 hour inhaler I convinced my doc to reinstate it.

In march, the lung specialist decided he would order an echocardiogram on that day, but took no notice of my low sats levels and would see me end of june.

Despite prompting the specialists secretary to give me an appointment for the echo, I found that he had not referred me at all. I have phone records of 9 occasions that I have spoke to them about forgetting me.

I finally spoke to the lung specialists supervisor and she said he had the referral letter in his ducket and she personally would chase my request up for the echo.

I finally have an appointment for echo on 20th july.

This should have been requested on 17th march when specialist told me he was asking for it

How have I had to wait 4 months+ for this?

I have never had offer of oxygen therapy referral, and how can I trust my specialist now?

11 Replies

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  • That sounds awful, carolcorby. You could try having a chat with PALS at the hospital about the poor standard of care you've been receiving.

  • Sorry. I have also just been told by the nurse at my doctors surgery that they will not test my sputum samples as they have not been authorised by my doctor. I am on emergency rescue meds every 6 weeks or less.

    I tried to explain that my sputum should be tested for the correct antibiotics to be ordered. How can I get to see a doc when they wont even return my calls?? I am at whits end

  • This is truly shocking Carol. I suggest you call the respiratory nurses on the BLF helpline (05000 050 333 office hours). Im appalled that your sats are on low when you being active. Under 88% is dangerous for your vital organs, and you go way below that. Assuming you are reading these through a pulse oximeter, then you could try changing the batteries. My old respiratory nurse says readings can go lower if batteries are on their last legs. Just a thought.

    I am also severe, at 33% fev1 on recent spirometry test. Like many here I have done pulmonary rehabilitation (course of exercise and education tailored for those with lung disease). If I were you I would ask my doctor to be referred to a PR course - you start from where you are in terms of your exercise ability, and work up from there.

    Also I would want to change my GP. If you are in a multi doctor practice, you should be able to see any of the doctors. You could ask at reception which doctor has special interest in copd - there usually is one - and try to see that one. When you go to a doctor appointment, take a friend or family member with you to witness what is happening. It's possible they may not want to do anything before they get the echo result, but still if your sats are so low it's extraordinary that you've never been offered ambulatory oxygen.

  • Your post just goes to prove that no one can sit back and wait for letters and referrals. If they dont arrive we need to chase them up.

    We have to be proactive fir ourselves and our loved ones.

    I can completely understand that you're at your wits end. It's just horrible & makes you feel even worse.

    Wishing you all the best for the future....good advice above. P

  • Thanks.. I have attended the pulmonary course and have also changed my doctors to the one I am with now. Looks like I have gone from bad to worse in changing doctors..

  • How long ago was the pulmonary course Carol? Were your sats going down then? If so they would surely have been picked up by the resp physios when you did your 6 minute walk test.

    The benefits of the course only last if the exercise is continued (in whatever form you choose).

  • I have also changed the batteries in my oximeter.

  • Hi 02Trees.

    I was on the course in September, but due to my excessive pulse rate was not allowed to participate in the exercise program. I tried the exercises but was immediately told to sit down and relax. My sats were ok then, so I do not know what has changed this year. I still work part time, even though it is difficult, so I try to be as active within limits.

  • That's really hard Carol. Lets hope you can get some answers soon.

  • Shocking the way you are being treated. I do hope you get the help you need soon. Yake the advice a;ready given to your post. What are your SATS like as this will sometimes depend on treatment G.P. gives you.

  • The way you've been treated sounds awful, I think it's time you started complaining. This is your life ans it sounds like it's not being taken seriously enough.

    which.co.uk/consumer-rights...

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