In 2007 I had RA nurse that I got on with quite well ,she was then promoted and took over my my care from the actual consultant on the most visits . She changed her attitude and although the consultant said for me to come back in 6 weeks for another pain injection to see me through xmas that year ,when i went to the hos for the injection she refused said I did nt need it and that she was in charge of my care and that was her decision . She said that I did not need a x ray even though I told her that my hips where getting worse , (The eventual x ray two months later showed bone on bone by that time and slight dislocation)
I was in agony that xmas my hips had started getting bad and the AS in my spine was making doing any thing extremely painful . Anyway what followed was very bad time for me ( 3 years ), she did not send the referral to the surgeon for my hip and so had to suffer longer and the RA consultant was so angry when he saw that I had not even seen the consultant surgeon let alone had my hip replaced . By then I had cancer and so could not operate until after the chemo and radiotherapy . So months of pain just to get on the table for my radiotherapy . the chemo gave a PE and I nearly died . which then also delayed any operation If she had sent the referal when she should have I would not have had the pain over that year .I made a complaint re her attitude and she lied . not once but about the whole thing over those months , so I refused to see her . I saw then the consultant over the last few years and now though have another RA nurse but she is very good friends with the one i complained about . She made sure I knew she was friend of the previous one .Her attitude is of a similar nature talking down to me . I received a copy of a letter she wrote to my GP surgery and she said "I complained about my neck ,shoulder and arm " and was considering whether to send me a x ray form . She listed my health issues and never mentioned the fibro AS lung damage plus others and really made it read as if half of my problem did not exist and I imagined the rest . It was so like being with the other nurse I really have no confidence that she will be fair to me . And at a time when I have the ESA form sent and hoping for a report from my RA consultant who is very good but if she writes it I am scared what she May NOT say as apposed to what she will say . Can I request that my Consultant write any report ?
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pottypam
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Oh dear what. a terrible place to be I . I am not sure how to go about things like that but someone on this site will know...I just wanted to say how sorry I feel for you and hope you get respite soon. Maryx
Hello
It is a problem that needs to be sorted quickly, try contacting PALS in the hospital and explain the problems you are having, they should know the complaints procedure. Tell your GP what you have done and explain you feel you are at clinical risk if this carries on
If still having problems contact CAB and they will point you in the right direction. This attitude is not professional and needs to be tipped in the bud,
One other way is visit the NHS CHOICES site there is also a complaint system of sorts on that site
Good Luck
BOB
Most definitely you can ask for the consultant to write your letter - they expect it to be from the most senior person in charge of your care. Also ask the consultant to refer you to Occupational Therapy - they are excellent and will write a letter of support and a full assessment of how you are impacted by your various illnesses/disabilities. If you want to get direct access to your consultant it's best to contact their secretary and tell them what you need to speak to them about - or sometimes the secretary can sort it out themselves i.e you can mark your letter FAO Miss Jones [for instance], Secretary to Dr Brown etc etc - that way it will go nowhere near the rheumy nurses.
As for the treatment that you've received so far from those nurses - it is absolutely not acceptable to be treated in this way and I feel that you should make an official complaint. I am so sorry that you have been treated so shabbily. Let us know how you get on:-}
If you have AS, then I'm really surprised you are seeing a RA nurse. You should be under a specialist AS clinic. If you aren't under a specialist AS clinic, then do some research and insist on being referred somewhere who understands AS and how different it is from RA.
I don't know what you can do about nurses like that though. PALS might be able to give you some advice about whether you can opt to not see them, and only see the doctors. Also, PALS can help you check if there is anything wrongly recorded in your file and assist you to get corrections put there. I know what its like to have power tripping paramedics though. I do think its a big mistake of the NHS to put so much responsibility onto nurses and physios instead of doctors. When they don't have the full medical training of consultant doctors they are never going to have enough experience to be able to deal with things outside the box, and can easily dismiss things that they don't understand. You wouldn't expect a classroom assistant to be able to take responsibility for teaching a class without a trained teacher there keeping an eye on them, but somehow its OK to have nurses take full clinical responsibility without anyone with expert medical knowledge ever checking up on them.
I see the RA nurse as also have RA and it has been bad, The AS I have had for over 40 years . I used to see the orthopedic surgeons for years but have been told they can not do anything for me now as operating out of question .and was on very strong pain relief and used to have pain injections regularly .But since having cancer and PE sI have to take Warfrin and not allowed the injections . I have infusions for my RA , And also due to the Wafrin and lung damage they will not operate which if pushed would be the only thing for the AS , The nurse thing happened before this when could have injections. So it seems treating what they can . and because of all the thing in the last few years even my Fibro has been over looked until now and take Gaberpentine on top of Morphine . The nurse never mentioned that in the letter to my GP
that`s an awful situation for you mary. you can ask for a `chaperone` at the hospital, someone who`ll sit in with you during appointments. they will make notes of what`s said, which can be handy for future reference. you`ll find that Nurse Ratchet might behave herself more when there`s a chaperone! dont put up with it, you must keep complaining as the system responds quicker to a persistent complaint-and a very justified complaint at that! good luck! x
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