Friday, 16 May 2008

The Clinic Yesterday - another rant

Went to my HIV clinic appointment yesterday .

  • I always end up so totally wound up - every time I go there!!
  • And I accept am oversensitive and part of it is me as I am less able to take this than others maybe? - Barry feels the same but does not care as long as he gets the drugs - but I do care, very much!!!
  • but they have some responsibility too -the 'attitude culture' towards those with HIV stinks at that clinic - this is my honest opinion!!

  • And I know I am right but I am powerless to do anything about it - except ship out and go privately or to another HIV clinic, both of which would involve travelling and I find travelling difficult

Barry and I went together but saw different doctors . This time because Barry was seeing our usual consultant I saw a younger registrar.

I had real hopes that seeing her would be marginally better as my hope was that she would not as yet be hardened and seeped in the judgmental 'culture ' of that GU/HIV clinic - it was slightly better, not but not by much??

  • Is is me ? or is it them?I guess it is always both
  • but I take responsibility for my part in it - the difference is they at the clinic think their attitude is fine!! That there is nothing about their interaction with me - or anyone else I guess - that is destructive and abusive and nothing they need change!!!!

  • They are sooooo wrong!!

I just do not feel that I am 'respected' spoken too with the same degree of respect and acceptance as I have when having medical treatment for other health problems

- for instance - only a couple of weeks ago the respect I received from the dermatologist that I saw about my skin problems caused by HIV was wonderful. And just last week a saw an Ophthalmologist who treated me with the sort of mutual respect I expect from a consultant.

I also had that level of respect and non judgmental approach/attitude from my consultants re my horse riding accident a few years ago i.e Mr Norton and Mr Parsons and my consultants when I had a gangrenous appendix some years ago................

I do not feel that this feeling of being patronised/judged at the HIV/GU clinic is my imagination at all as I have other experiences with consultants to compare it with

And one thing is for sure - they do not realize they are doing it and it is part of the 'culture' of that clinic!! If you challenge them on this - it is immediately thrown back in your face - as your problem - they certainly do not take it on board as something they may need to look at as a service!!!!!!!!!!!!!!!!!!

It was made startlingly obvious that there is a culture of judgmental attitude at that clinic towards 'clients/service users' when yesterday - because the person who usually takes the HIV bloods was on holiday - I got a new nurse to do my bloods who has just moved over to GU, who before this was a midwife - only last week she was working in the maternity ward, this week she is in the GU taking HIV bloods

and she was just so refreshingly not judgmental -

.......unlike every other nurse and doctor I have seen at the Truro GU/HIV Clinic.
  • I am guessing because she has not been there long enough to have been indoctrinated into the judgmental attitude that exists in the clinic!! !!???

I told her our story -mine and Barry's i.e how we got HIV - don't ask me why I tell it to new medics and nurses? I think to see if they give me a judgemental reaction or not ...............

And she did not at all..........she was sympathetic, non judgmental, believed what I said and could see why to get HIV given my lifestyle was a such a shock and the extent of what that shock was!!!

( whenever I tell the older 'hardened' nurses/doctors at that clinic the fact that for me is very important i.e that I personally have never taken any risks that potentially in the usual run of things lead to HIV, and so it was probably more than a shock than it might have been had I taken any such risk - they just respond with what I can only describe as 'silent disbelief and dismissal'.

It seems they do not believe anyone who says they got HIV truly 'by accident' and without doing any 'risk taking activity whatsoever? I am not asking for 'special 'treatment for this, jsut that it is acknowledge what a shock and how unexpected HIV is for me.

And also that I have ALWAYS been a sexually very responsible person, especialy since I sorted myself out in my 20s re my sexual health and never taken any risks for me or anyone else. Also as a youth worker for many years with a remit/specialization in sexual health/ relationship health I have knowledge to back this up..........................

and I want that acknowledges.

Maybe I am reading them wrong and their reaction is due to the idea that 'their are no innocent victims of HIV??

  • Well I do not believe there are any 'guilty' victims of HIV but my perspective is different as I think we are all innocent - it is a virus, the virus makes no value judgements - only people do!!!
  • I am not trying to say I am any different from any one else with HIV - I feel we are all innocent as this virus does not respect anyone it just finds a way in if it can and it is a virus

Only we humans put stigma on what is a completely thoughtless entity with no purpose but to survive......

But what I do want from those who treat me is some recognition/understanding/empathy of my own unique situation and the pain/hurt it is causing me - and that everyone else gets responded to as a unique person

I am not saying my situation is unique or deserves any special or different treatment from anyone else with HIV............

What I am saying is from my medics - nurses and consultant, doctors - I want recognition for mine and every one's unique situation and story of how we got HIV, and understanding of the pain, hurt we are going though and no judgment of any kind

And at the Truro GU/HIV Clinic I do not feel I am getting this AT ALL!!!!!!!!

When I go to the GU/HIV Clinic I feel that by just getting this disease - even if it was through sex with my husband of 21 years - I have advocated - in their eyes at least - any rights to be considered to be a competent person in ensuring my sexual health and in all other aspects of my life,
i.e a person who looks after myself and capable of making my own decision as to my treatment and how I live my life - of course when it concerns medical stuff based on their expert medical input .

But this for me never happens at that clinic - yet again I found myself feeling I was being preached at, this time by a young registrar half my age and experience!!

I just do not seem to get the acceptance at this HIV/GU Clinic, that I am a fully functioning person despite my illness and am competent to make my own decisions re my lifestyle, treatment and illness and do not need them to judge or offer 'advice' from the perspective of judging me and knowing best - they know about the medical side due to their training but they are not me and they do not know my body as I do or my mind.

Obviously I bow to their greater medical knowledge - and it is fine for them to make 'suggestions' based on that greater medical knowledge, their role of my doctor/consultant for HIV and what they know of me ..........

But I do not feel this is what happens at that clinic - I do try to go their with an open mind, make a fresh start every time and hope that I do not feel judged or patronised..........

But the minute I do, my hackles are up!!

This was a new and junior/younger doctor as she is a registrar so I was hoping for a different approach - less set in the judgmental .

To be fair she was slightly better - but no by much

They just do not even realise they are doing it is what really p****s me off.

That to see people with HIV in this way is just so ingrained in the 'culture ' of that clinic is what is the problem for me - so much ingrained that do not realise they are judging or judgmental and they will see me suggesting/knowing that they are as my own problem....

Well I hope someone form that clinic reads this and that they will at least accept...........

Thant even if they feel it is my problem

  • I am the patent - and they are getting it totally wrong with me!
  • every time I come back form that clinic I feel totally crushed and abused - yes abused - fro at least the next few days
  • usually in tears for the next 24 hours every single time I go there!!
  • That even if this is 'my problem' to give me the best treatment don't they have an investment in rectifying this ?
  • Can they not try to understand what they do that leads to my feeling like this?
  • Thant even if it is - all in my head - and I know it is not, that they have some responsibility to sort it out so it does not happen

  • As they all individually will move on - but for me HIV treatment and attending such clinics are for the rest of my life


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