Having read of people's experiences with their GP's, consultants, local government, employers, benefits etc I have to say I feel incredibly lucky. Since before my diagnosis in April 2011, and the transplant news in November last year everyone I have encountered on my journey thus far have been amazing people and I cannot sing the praises of my GP enough. I know that i am probably still quite well compared to a lot of people here in that I still work full time etc however I am under no illusion that things are going to get worse for me.
It does worry me therefore that as I deteriorate that i will come up against lots of the obstacles you have already faced and written about here but I am very glad that up to now I have been treated so well.
Not sure why I wrote this but maybe its to just somewhere to record my thanks...
I am in total agreement with you. My support system and treatment has been excellent and I have absolutely no cause for complaint - especially as it is all free. I no longer work but do try, by various means, to keep myself as active and well as possible. It is not easy but I believe that I have to take some responsibility for my health and not just sit there and expect it all to be done unto me. My guess is that, given your outlook, you will continue to have superb treatment .... cannot for the life of me imagine why you should meet with any obstacles.
I'm with Blodwyn on this....I think sometimes when we are not well it can be hard to have any perspective about things, but I find my doctors to be genuinley interested and concerned about my care. I've chatted to their secretaries when I've had any issues and querries and they've been sorted asap. I think you have to work as a team with your care providers...not treat them like the ememy!!
I have to agree - I have received excellent treatment throughout my illness. Because of the nature of my chest problem (as a result of an auto-immune disease) I have had and still do have a range of people who work with me. Two general hospitals, my GP and at the Royal Brompton, the Respiratory Team and the Pulmonary hypertension team.
Everyone I have had contact with has been great - treating me with care and respect and arranging for me see another specialist as my problems have developed. Every time I see a specialist and my treatment is changed or tests done, I receive a copy of the letter that is sent to my GP. As I probably see my rheumatology consultant the most frequently ( every 3 months or less) he can explain anything I don't understand. When I had read about a new drug being trialled at RB for Pulmonary Fibrosis and asked my rheumatologist if I could possibly be included, he wrote to the Professor in charge at RB and I was called up a few weeks later.
I do think it is important to take a positive role in your treatment - I'm not prepared to give up even though I know my prognosis is not very good (although when I am feeling more tired and breathless than usual I do need to give myself a talking to!!).
While feeling very grateful to the NHS for all this care,I do also often feel guilty about how much my treatment must be costing. Thank goodness for living in this country - isn't the sign of a civilised country the way it treats its sick? I know there are some things which are not as good as we would hope but at least I never had to worry, like my mother did, whether I had money in my purse before I called a doctor to see my sick child.
You can have your say and voice your opinions through your surgeries Patient Participation Group. Even better ,why not join your Patient Participation Group? It is run by patients trying to help better their GPs practice.IT WORKS!
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Val
My"lucky" break
How lucky we are
I feel lost and so alone
Feeling so let down xx
