Hidden

hi there dyllan i'll tell you this that some doctor's just don't care or what to understand what it is your asking. i used to be under a doctor before i moved to where i am now and she back then wanted me on insulin for my diabetes that if i just said o.k to her, i would either be in a coma or worse still dead, when i went to the diabetic centre to see the diabetic doctor he was about to put me on insulin said i needed a blood test, told him i just had one, he looked at the screen looked at me and said forget what i just said your blood glucose levels are o.k. so if not happy see another doctor. take care my friend Alan

Hidden in reply to Hidden

That doesn't surprise me at all sadly. I am going to get my doc to refer me to Southampton

Reply (1)Report

Hidden in reply to Hidden

hi dyllan all the best in what you do Alan

Reply (0)Report

Tinabelle

Do you have Churg-Strauss Vasculitis? Did you get osteoporosis from the steroids? Join the club! I broke 4 vertebrae from steroids. Worst pain I ever had. Taking Forteo injections now which seemed to help. I am on my last month.

Sounds like you need to find a new doctor. Sorry you have to go through this! You have enough going on!

Take care!

Hidden in reply to Tinabelle

No I have Granulomatotis with Polyangiitis, I don't have osteoporosis. My bones are fine apparently, even though I fractured 5 bones last year.

Yeah I'm not going to see her again and I really don't want to start these new meds, she didn't even explain what they were, just gave me a leaflet.

Reply (0)Report

Hidden in reply to Hidden

Hi why have you so many fractures if your bones are ok.Stuff the leaflet ask for an explanation. Cheers

Reply (0)Report

PMRpro

This really is something you need to discuss with your GP - providing you have a good relationship with them. Once you have lost confidence in a doctor there is little point in trying to continue the relationship but in the NHS system it isn't as easy as just saying "find another". It should be possible to be referred to a different hospital which should also mean you see a different doctor - but only if it is a different Trust so be careful.

I imagine the VasculitisUK Helpline should be able to discuss options that are relevant to where you live.

Hidden in reply to PMRpro

Yeah I have a name of a specialist in Southampton but my GP wanted me to give her one more try as I've only seen her since last August. But yeah I don't want to see her again

Reply (1)Report

Rowmarsh

Don't fight it. I had the same problem but continued with the same arrogant doctor and now I have severe cardiomyopathy linked to my CSS. All the signs were there. Get yourself a second opinion. It's your life and your body and the NHS is there for you not them. A lot of doctors like to think it is a privilege for us!

Hidden in reply to Rowmarsh

I won't fight it, I just refuse to see her again

Reply (1)Report

Hidden

There are quite a few similar cases across different forums (e.g. systemic autoimmune condition-related ones where organs are under "attack") where patients are dissatisfied with the poor standard of care (e.g. symptoms not listened, and mainly ignored). The general consensus is that there isn't anywhere independent where you can take your complaint, to be heard after people are still dissatisfied by the Trust's complaint department / Ombudsman etc. Hence, there is a desperate need for an independent body, replacing the current inadequate complaint system. Surprisingly, I have never seen a single petition / campaign to make changes, constructively.

I agree with Rowmarsh. At present, no matter how much or how well you complain, the same doctor will continue to practice the way they do with other patients. Their status is well protected and they know they have the upper hand over patients. I'm only repeating what Rowmarsh already described.

Derek

Hi, it seems imperative to me that anyone being treated with steroids longer than say 2 weeks (?) and regardless of their problem, should have treatment to avoid/reduce bone deterioration. For example, a dear neighbour with COPD was never given this treatment by her doctor until my wife (ex nurse) queried it. Our neighbour often cracks one or more ribs through coughing and is in constant pain and has to take morphine every day to ease this. Quality of care was sadly lacking when she needed it most. Sleep is almost non-existent. Understandably COPD is progressive but she would probably have coped better than she does now with the correct support.