Update on the hip saga…….

So as you know on Monday night I managed to partially dislocate my left hip. More evidence for the case that I have Ehler -Danlos Syndrome, that’s another story.

I spoke to my GP on Wednesday to advise him of the Hip saga and to get his advice. He told me all that I was doing already was correct and that if it didn’t settle I would have to go and see him. I was a little annoyed that although my hospital consultant agreed that I should see the geneticist about the possibility of the fact I have EDS, my GP felt we should wait and see how I get on with the florinef. However when I suggested I pay for the appointment to the geneticist he was more than happy to do the referral. It comes down to budgets doesn’t it, if its NHS money that’s being spent, my diagnosis can wait. If its my money I am spending I can be refereed, the conservative party health care reforms have well and truly kicked in. We are back to the two tier NHS.

Why is it OK for me to pay, when he doesn’t feel a referral under the NHS is necessary at the moment? He told me he would prefer that I stayed within the NHS, but I can’t because at the moment I am receiving no care for my unstable joints and the pain they cause. Its also very important that I get a diagnosis so that my sister can get a referral and so can her son who is also showing EDS traits. EDS is a hereditary condition, my sister and I need to conserve our joints, we need to protect my nephews joints so he doesn’t get to the state we are in. Nobody seems to want to take any action. They are looking at the short term cost of referrals against the life long cost of treatment if they don’t identify what is wrong with us. We are actually trying to save the NHS money, preventative action is better than long term treatment.

My sister ran into someone with EDS and three children who had EDS and she took one look at my sisters scar on the back of her knee and said that’s EDS. My scar on my stomach is also wide and flat, like my sisters knee scar. The evidence is just overwhelming, so why is it down to me to pull this all together. Its crazy, that I am the one doing all the leg work?

All I have done for the last few days is sleep. Today I am running a low fever, but my hands and feet are blue with cold. Despite my rip van winkle impersonation I am still exhausted. I don’t know what to do with myself. I don’t want to be continually popping pills but I don’t want this gnawing pain in my hip either. Decisions, decisions…..

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2 thoughts on “Update on the hip saga…….

  1. Hi Rachel .. I'm not going to be very helpful .. except perhaps to (gently) write to the consultant direct and write or contact your MP or Councillor ..

    Look after yourself .. as best you can .. and that's definitely important .. but obviously the stress isn't too helpful ..

    With thoughts – Hilary

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  2. Hi Hilary,

    You have been very helpful. Its exactly what other people have told me to do.

    It isn't right that I can be referred privately but not on the NHS.

    I am trying very hard not to ge stressed…..but my blog gives it away!

    Thank you so much

    Rach xx

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