Feeling let down by professionals

I've been diagnosed with copd last year and since then have only just got on the waiting list for lungs rehabilitation .

Had a visit from a really good copd nurse who shockingly informed me that I have been prescribed all the wrong medication and pumps from day 1?

She also told me that I should also have an emergency pack?

That was days ago and I'm having to run around and call the "copd" team all to no avail?

I've also been diagnosed with depression as I'm not allowed back to work because I had 3 exacerbations in 2 weeks?

What can I do myself to improve myself as I've lost faith and trust in the NHS nurses?

8 Replies

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  • Hi, the only advice I can give is keep battling to get the best care you can; do not accept substandard care and don't give-up.

    Unfortunately, there are a lot of GPs/Consultants/Nurses whose level of interest/care is very lacklustre. Keep fighting to get the best care you can and don't stop fighting.

  • Hi, the BLF produce several booklets advising about COPD. See here:

    shop.blf.org.uk/collections...

  • Hjello bizylad

    Don't dispair....Google NICE guidelines for copd...this should give you an idea if what treatment you should be getting.

    Don't lose faith in your copd nurses...go back to your GP and ask him to sort out the correct medication for your condition, and the procedure he uses regarding emergency meds etc

    Many of us who have COPD wait longer than a year to get on a PR course.

    Work with your respiratory team, but go well informed.

    I hope you get a better level of care

    x x

  • Hi, I'm sorry you're having a hard time. I too have had 2 chest infections within a month and am off work for the 2nd time but what can you do?

    I would recommend looking up access to work on the internet, they will come into your work and make recommendations as to how your employers can make adjustments to help keep you in work. In my case that means a clean desk area, keeping away from people with colds and infections, providing anti bac desk wipes and hand cleaner and a humidifier to help with the dry air from the air con.

    Your nurse should also talk it through with you and decide the best treatment for you.

    Just stay positive check things out and good luck xx

  • I'm a carpenter who works (or did) on site?.

    It's nearly impossible to get a clean work space?

    It justseems pointless with it all?

    Being laid of after 33yrs and to be basically ignore by healthcare professionals has just made me think what's the point?

    The were on my side whilst I was stopping smoking?

    Now no-one seems interested . I don't see any point in carrying on and have resigned myself to whatever happens!

  • So are you supplied with masks? the dust won't be helping you at all. We all get down from time to time love it seems to go with the territory but never give up fighting. Do you have a respiratory nurse? They are usually good to talk to, if not see your gp. Tell him how you are feeling, if they think you are feeling ok about it all they will leave you to get on with it but you really do need some support at the moment.

    You're in the right place here, the guys are great at listening and offering practical support and advice, and why is that? because we all live with it every day. There are good days and bad days but never stop fighting, you can slow down the progression by exercise and healthy eating. We all like to have a bit of fun on here too breaks up the day.

    Remember, you have copd, it doesn't have you!

    Take care and look forward to chatting with you again

    Shelagh x

  • Keep requesting .with the appropriate team members until you get thereto which you are entitled.I appreciate it can be tiresome but for many it seems the way.Speaking as a Respiratory Nurse and query mild c.o.p.d.Thus far my care and various diagnostics have been superb.I do know that is not always so.Good luck.......

  • If your nurse is saying your on the wrong medication and inhalers then you must go back to the doctors and discuss this with him

    The emergency pack she is talking about is a supply of emergency antibiotics to have at home in case they are needed which most of us have

    Pulmonary rehabilitation is brilliant as many members will tell you...

    Having the right meds and inhalers can make a huge difference and can make you feel a lot better which will help lift your moods so go back to your gp and get things moving but if you want to ask medical questions or benefit enquirers the BLF helpline can help 03000 030 555

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