HELP! I am being ignored!

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missishy
missishy Member Posts: 13
edited 6. May 2010, 10:21 in Chat to our Helpline Team archive
Hi everyone,

I have been having a flare for 3 months now. Intially I went to the nurses and received a steriod jab - this kept me going 3 weeks or so. I then started to seriously fatigued again and had to come off work. Had an emergency appt with Rhumatologist (after much hassling) he saw me (in a rush at end of clinic) examined me and told me my pain wasn't obvious (no swelling or the sort). I explained my symptoms and he said 'Jury is out on whether it is RA" sent for blood tests on 31st March. Called and called since then to get results and get follow up appt. Got GP to tell me that results (my RF now +) but both my GP and I have called numerous times to speak to Nurses and Rhumatologist's secertary to try and get follow up appt (at least twice a week!) no - one calls me back!!!!!!!!!!!!!! No one arranges appt!!!!!!!!!!! I have had 5 weeks off work now!! What shall I do? I am at my wits end - who shall I complain to?

HELP!

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  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Miss Shy,

    I a just butting in cus I really feel for you. I now what uncontrolled flares feel like cus well mine is still uncontrolled after 10 months. Unlike you I have been lucky and have a good rumo but it makes you feel so ill. I sometimes think you just have to keep bashing your head against the gp and the rumo secretary or maybe you could ask for another opinion..... It can't be a second since you have you haven't really had the first one yet!

    leaving you a ((( ))) and a hope the helpline folk will know what you can do but I just anted to say your not ignored here. Hang in there flower, Cris x
  • helpline_team
    helpline_team Posts: 3,488
    edited 30. Nov -1, 00:00
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    Hi Missishy,
    Having to live with painful symptoms but with no definite diagnosis can be frustrating, particularly when you feel you are being pushed from pillar to post by health professionals and you have the work commitments adding extra stress you don’t need.

    From your other postings, I am not sure as to whether you are on methotrexate, and if you are how long you have been on it for? The reason I am asking is because it usually takes a few months for methotrexate to show positive affects, which could explain why the rheumatologist is maintaining a gap between appointments.

    If you do however wish to complain about the quality or lack of care you are receiving then you can contact the patient advice and liaison service (PALS), to find your nearest PALS office follow the link bellow: http://www.pals.nhs.uk/officemapsearch.aspx

    The only advice I would give is for you to remain persistent and forceful yet polite to the health professionals to ensure that they do not forget you, I really do hope they see you soon.

    Due to this being quite complicated, it may be easier to discuss this over the phone, via our confidential freephone helpline.

    Best Wishes
    Adele
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