Had enough now!

Went to JCP as requested as l am in Work related group, feel l should be in Support Group now what with recent diagnosis of COPD as well as the Fibromyalgia which was diagnosed in 2009. JCP said l must get a letter from my dr to confirm the Copd and send this to DWP requesting a change to Support Group.My Dr said she did'nt understand what the letter was for despite my having explained what they (JCP) had said l must do and why, dr said it would cost me £30 for a one line letter saying l have Copd!!! then she started asking me about 'work' when did l last work, what is my attitude to work etc, seems pretty obvious to me that she thinks l should be working,...l got breathless washing up the dishes yesterday!!!! what do they want

BLOOD!!! then when l said the Ventolin l have does absolutely nothing now she said l must make apt with pulmonary nurse, and then l mentioned that neither the tiotropium or the carbocisteine are having any effect her answer was the same, then she tried to have a go at me asking why l had'nt had my 'copd review, when l had that back in May( is'nt it supposed to be 6monthly for moderate copd) which she realised after much searching on her pc!!!! in the end l got a copy of my 'summary' which has info on it to say l have copd and another sheet giving results of the spirometry l had in march, after much searching again by the receptionist!! ....My reply to her when she wanted to know why she had to write this letter to the DWP and l had already explained, what COULD l say" Hey don't shoot the messenger" L have to seriously get down and do some research because l really have had enough of her , she makes me feel like l have nothing wrong with me and should feel guilty cos l can't run the London Marathon!!! l WISH l could!!!!

8 Replies

  • Hi Sue 930,

    Sorry to hear of your experiences with your doctor and receptionists. Its just not on.

    Unfortunately, I had a bad experience with one of the doctors, which would take too long to go into now, but if you can be bothered looking back over my old posts, the heading is "Has anyone had any experience of the drug Pregabalin?"

    I was very upset with the doctor's manner, and she couldn't get me out of her room quick enough. She didn't seem to want to listen to me, and although I told her a similar drug caused increase in my seizures she wasn't interested. I came on here and vented about the whole experience, and got a lot of good advice. One of which was to report her to the Practice Manager. Now I live on an island with only one practice, and its going to go round like wildfire, and none of the doctors will be nice to me after that. However, after much thought and a heavy heart I phoned for an appointment with the practice manager. After all, they are getting paid enough money, and it is their job to look after us in the best possible way. I thought the manager would be a suit, and side with the doctor, and waffle about it being a doctors decision etc.

    When I went however, nothing could have been further from what I had imagined. I thought I would burst into tears again, as I felt at the end of my tether. However, his jovial and talkative manner meant that didn't happen. He gave me over an hour of his time to explain things, and asked if I would accept an apology from her. Of course I said that I would.

    I had to put all my points down on paper (actually I emailed him), so he could discuss with the doctor. He said she had 10 days to respond to me in question, and if I wasn't satisfied, it would go off the island for someone independent to adjudicate, and if I was still not happy then it would go to the Ombusman. I thought oh cripes! I explained my concerns about the attitude in future of her and the other doctors, and he said it often turned out the opposite way of what I thought.

    Anyway, I am glad I complained because I got a letter back from her in which she apologised in 3 different places and invited me back to discuss things further if I wanted.

    The letter, I feel vindicated me, as no doctor would apologise 3 times for a letter in which I called her harsh and uncaring among other things! The fact that I didn't stew over it helped as well.

    When I wrote to her, I just kept to the facts and didn't exaggerate anything and just explained my position. The Manager had explained I was not to fret on anything, and any problems just to get in touch with him. Now that I have done it once, I would not hesitate in doing it again if I had to. If you decide to go down this route and have any questions just get in touch with me, and if I can help I will. Lets face it, we wouldn't put up with that kind of an attitude from a tradesman we had in our house or something similar. Good luck and I hope you get it sorted out soon. Letting things fester doesn't help our health as you know.

    Take care, and let me know how you get on.

    Lots of hugs,

    Huggs xxx

  • Thankyou so much for reply Huggs, wow, you were brave, l don't have that much confidence in the system, they keep changing the goal posts and why would one team do that.....so the other can never score a goal, if you get my drift! It is true thro we would never expect that kind of attitude from a tradesman etc and at the end of the day they are supposed to be there FOR us and not against us! I am lucky l do have options, another dr, this one l had trouble with regarding my Fibromyalgia as well and having met someone who runs the Fibro group she was most interested in which dr l had seen because when l had to ask her what Fibro is she told me to 'Google it' apparently somebody else had had the same amount of interest regarding Fibro from same dr. I kind of think that if a dr has to be reminded how to be one then perhaps they should'nt be and l might be better off at a different practise. Thankyou again for all your words of encouragement,

    Sue 930 X

  • Hi Flibberti, Wow, so basically unless you are totally incapacited then there is little chance, even thro on my bad Fibro flare up days l can barely get to the loo let alone anything else!!! I am re-thinking. Thanks for reply nontheless.

  • hi if you only have mod copd I don't see how you can possibly be out of breath washing iam end stage copd & pulmonary fibrosis I could not benefits until iwas classed terminal I see consultant every 6 months sadly some people think that copd is a passport to benefits but it is not. fibromyalgia does not affect your breathing

  • Yes Teaky-19, thankyou, l know that my fibromyalgia does not affect my breathing, l have had it for many years now.Whether YOU believe it or not l KNOW l got out of breath washing the dishes, why!! ? l do not know, perhaps l was having a mini panic attack or something like it, it happens sometimes when giving up smoking as l did near four months ago as soon as l was shocked into it, it sometimes takes a shock to put things in perspective does'nt it!

  • I too had a consultation with one of our GPS that left me feeling humiliated and baffled by what took place.I had been asked by him to make the appointment a month after trying a new cholosteral tablet,,statins don't suit.I did feel unnwell when I arrived and was breathless and coughing. He looked at his screen and said it is OK I did an emergency meds prescription yesterday,check with reception on the way out.I told him I had not been the day before and had come to have a review re the tablets. With that he called out the names of the COPD treatment I am on and said...there is absolutely nothing more I can do for you, followed me to the door and said......things do get worse as you get older you know. The prescription he mentioned did not exist and it took several days for me to get some more cholesterol tablets. He was obviously having a bad day but it has put me off seeing him again. This was in April I have not had any abs since March and now have some emergency meds delivered by the pharmacists last week. If I should need to see a doctor from now on I will ask for someone else. Joyce

  • I had a similar problem I have had breathing problems all my life and also heart problems. Even when my cardiologist sent my GP a letter stating that he has serious concerns over my breathing they refused to look any further and concluded it was ll down to my heart conditions! Even the fact that I had in 2008 a full lung failure and severe infection that put me in ICU for 32 days did not seem to make any difference to their thoughts?

    It was not until I found I had work with asbestos did they do a spiro and then sent me to a consultant to confirm RLD, Fibrosis and APH! When I said to him while I was in for my 14 scripts review how out of breath I am going up stairs etc. He Said ohh you do get out of breath then? They used to just do the finger oxy test after I had sat down with no comment on what happens after I do anything. I can be 92/94 at rest but go up stairs and I am down to 78/88% but it was only the hospital that confirmed that I am 57% upright and 45% lung function when flat.

    Blinkered comes to mind.

    I am on support group ESA BTW after appeal.

    Be Well

  • I have COPD stage 4 and the lung capacity of a 78 year old plus. I worked most weeks 68 hours plus on nights and I was turned down for ESA I had to put in a fresh claim which took a year to get an assessment.

    I also have bulging discs in my lower spine which I have injections in hospital I also take morphine for the pain but having all this does not open the doors to the benefit system and as we are fast approaching a election we should vote with our feet we should remember it was labour who set up Atos and the Tories who have continued with the system that failed before it got started.

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