A Rheum with a clue – rheumatology referral

Today I had an appointment with the infamous Dr Kazkaz at the University College hospital London on the Euston road.  I was super nervous as I hadn’t traveled to London for some time and the hospital was completely new to me.  Reaching out on facebook saved my life as friends talked me through the journey and what to expect when I reached the hospital and got inside.  It calmed me so much, although I was still so anxious I hadn’t really given the appointment much thought at all – I was just worried about getting there!

Having a bunch of firm diagnoses and being largely under the care of my GP, the dispenser of pills, I hadn’t really engaged in secondary care for some time.  When I went to my GP and said something along the lines of ‘please fix me – there must be more than this’ my GP referred me to the local rheumatologist.  To say she was unhelpful and down right hostile would be an understatement.  She demanded to know what I hoped to achieve from seeing her, to which I answered “I need better pain management and a better quality of life”.  Don’t get me wrong I love my life and can mostly smile through the pain, but there’s always room for improvement, right? Wrong, according to local rheum.  Pain management would not help as it was all in my head, and the only way I could improve my quality of life was to get up and exercise.  Would that I could hunni!  I left the appointment with boiling tears pricking the back of my eyes, just waiting to escape.  I was not going to let her see me cry, to let her see how much she’d torn me down.  The one positive that came from that appointment was my referral to Dr Kazkaz.

When I went in the room I was bet with a very enthusiastic and friendly Dr.  She talked very fast, but only to get all the extra information she needed and to give me the resolution I needed.  She checked every scar, every joint, every finger and toe.  Though I was in there 15 minutes, she absorbed every single part of my pathology and addressed every single bit.  Referrals were made to clinics and specialists, and the ‘made up’ condition I had insisted I had (EDS hypermobility type) was instantly recognised and my ten year old diagnosis was confirmed, for me and for the sake of the horrible local rheum.  To get me the care I need.  That is why a diagnosis is so often important, as it opens doors to the correct care.

Now I know that so many Drs are overworked and under-appreciated.  I know that the majority Drs are excellent clinicians, who actually care about their patients and what happens to them.  For so many though, particularly when disability and chronic illness is involved, we have that horror story of the Dr who made us feel worthless.  Like time wasters.  Like it is all in our heads.  For me, I am so glad to have had the opportunity to see Dr Kazkaz today, and finally get seen by a rheum with a clue!

Have you had a bad experience with a medical professional?

Do you have or have you had the best clinician ever?

I’d love to hear your experiences, both positive and not so positive.

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