Well my letter of complaint to PALs has been sent. What experience have others had?

By coincidence the same day I sent my letter I received one from the hospital in response to an urgent referral my GP sent three weeks ago asking for permission to treat me if they weren't going to.

The letter from them effectively says I am not worth treating. That I had no right to go to my GP and demand treatment. That he could give me one steroid injection if he thought it was worth it but and I cannot believe the tone of the letter. "Miss xxx should be made fully aware that by asking for steroids she is putting herself at risk of obesity, osteoporosis, heart disease and other complications and it is not a long term solution".

No other solution has been offered by the way. The letter goes on to state I had failed on four dmards because I said I couldn't take them. That the ultrasound showed no active synovitis so there was no point to them doing anything and I was not being followed up because I had been put back through the central booking system as I was no longer an active patient.

My symptoms have not changed and have got worse. I have not asked for any drugs. The rheumatologist refusing to treatment me now referred me for an assessment of my knees. The physio was so horrified that she called my GP and suggested steroids.

They scanned my hands and feet not my knees and elbows but have stated that as they could not see inflammation on that day in my fingers I cannot have it anywhere else.

These are the same people who last September put me straight on triple therapy because these same symptoms were "classic for RA and I needed to be treated straight away as I must be in so much pain!!!!!!

I'm scared our PALs team have no teeth here and I will just be blacklisted completely

6 Replies

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  • When dmards don't work and labs are negative but symptoms debilitating are patients in general just left hanging? Your case is not the only one I have read on this forum. Are these patients not examined more thoroughly? If it's not inflammation seen on tests it still is something that is wrong. Just adding pill upon pill, is this modern medicine? Becoming more and more convinced that if meds don't cure, best to keep away from them:(

  • If your GP supports you & the letter from the hospital is as patronising & insulting as it sounds I would send a copy to my MP, asking him/her to get an explanation from Jeremy Hunt, Sectetary of State for Health.

    We all know the NHS is in a huge financial mess, but you are a patient of a doctor in an NHS Hospital whose GP thinks she needs treatment.You are being treated disgracefully & whoever generated that letter needs a BIG wake up call. From your description it sounds as if the Rheumy department needs investigating....it seems there is no overall view if who is doing/saying what!

    Is there another hospital your GP can refer you to? If I were you I would not want to go back to confront the doctor who wrote that letter.

    Good Luck! Please let us all know how you get on.

  • Wow ! I thought I had issues! I am shocked ! I cannot imagine being treated that way by a so called professional. There are so many people affected by RD and other autoimmune diseases , all over the world. I would be demanding patient representation on all relevant hospital committees. I take it NHS means National Health Services ? If it is a government service they work for you. One voice does not demand attention but many voices do. I would be pitching a serious fit.

  • GP called tonight to say he fully backs my PALs letter and is appalled by the tone of the latest letter from the hospital

  • Thank goodness for your GP at least! This is all so awful I can't think of what to say - I presume you are keeping notes of it all. But good luck and well done for making a stand.

    The suggestion above to get referred elsewhere sounds sensible. Also, do remember that if you don't get a satisfactory response from PALS you can then take your case to the health ombudsman. Make sure they know that you will do so as might help motivate them.

  • Hi. I am trying to work out if you are in the U.K. And NHS is the government health system?

    It is a little different here in Australia

    It sounds like you hit an idiot doctor system, not your GP the others you saw.

    Unfortunately public hospitals can be gatekeepers eg denying patients treatment by giving big runaround til you give up.

    Some specialists can't cope with an intelligent patient asking questions and (challenging their feeble minds)

    Can you ask for a referral to a private specialist? That you see in his rooms not at the hospital?

    I was diagnosed by my GP many years ago after a caesarean went horribly wrong and I had to have blood transfusions.

    It seems to me that an event or health crisis triggers it to start.

    Anyway I presented to my GP with swollen hot knees and hands. He immediately referred me to the Professor of Rheumatology at the Royal Adelaide hospital who was really good.

    The Gp sent blood tests to him and my first visit he examined me, and started me on Methotrexate and sulfasalizine

    Which I still take today.

    The inflammation was obvious and I already had lost full range of movement in wrists, toes, fingers, ankles etc

    But for four or five years it didn't show up on my monthly blood tests. He took baseline x rays

    And said that even though the blood test was negative, the symptoms were conclusive.

    So my comment is that the hospital sounds like they are giving you the run around. Here GPS don't do cortisone injections.

    So you need a new rheumatologist who's not convinced of his own skills and listens to what you have to say.

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