Comments the survey so far on judgement/stigmatization for Hep C - Interesting!



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MattAdmin
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Posted: 12/12/2008 03:26 PM
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Really interesting commments - please see the responses below this one

We've taken a sample of the responses from everyone who filled out the survey
http://hepatitisctrust.questionpro.com/ if you haven't done it yet

We divided them up into the different groups of responses to try to get more sense

Please add your thoughts or own experiences if they touch any nerves

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Posted: 12/12/2008 03:34 PM




GENERAL COMMENTS

I did not give details of my illness to my work, however, because of a psychotic episode, due to the treatment and consequent illness, outside of work, I lost my job. This was after a lenghthy process that did not help in my recovery process and I eventually gave up the fight with my employer. I live in a small village and felt judged by the local NHS receptionist. I believe that the stigma can be an extremely damaging thing and may even prevent people from seeking prognosis or treatment.

I have been treated fairly with everyone.

I  decided to tell only people close to me. We were frightened together. The MRI nurses have been fantastic!

Hep C still has the same stigma as H.I.V. the public and employers need more education to understand the condition

When disclosing to prospective sexual partners, there has on occasion been a lack of understanding about Hep C and its routes of transmission, leading to anxieties about sex and safer sex. .

Sometimes people have thought they could catch Hep C just by being in contact with me.

It has always depended on how I have presented the information and who I have chosen to tell it to

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Posted: 12/12/2008 03:36 PM




COMMENTS FROM SURVEY ABOUT BEING JUDGED AT WORK

Work - significant prejudicial treatment, resulting in serious career damage and financial loss.

work: forbidden to follow first aider course. total lack of understanding of treatment repercussions, contamination issues.

I lost my job at age concern r.u.t. because they did not believe that my problems were caused by the illness, but were incompetence. Because of this they refused to make any reasonable adjustments and refused support from access to work.
   
public with some friends and family , looks, they stopped talking to me or seeing me. I do not mention my illness. at present I do not work.

More so in the past

no because I keep it to myself in work
   
I feel there are still times when you dont mention your condition

declared my condition to staff when I was in for a biopsy for cancer, and then I was put in a side room and it felt like isolation.
   
I don't tell anyone i have HepC,in case i would be judged.

There is a stigma attached to hep c mainly due to ignorance.Iam unemployed at the moment.With more employers asking for health details,I find that most employers are wary about hep c,cannot prove it,i am still unemployed though.
   
People at work or in the NHS have been sympathetic.

Most people judge themselves before anyone can judge them or they won't divulge any information unless they really need to which relates to the stigma of the virus.

ignorance of condition by staff as to the infection source

I work in the NHS and have found the so-called work life balance and caring attitude noticeably absent and just lip service.


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Posted: 12/12/2008 03:39 PM




COMMENTS FROM SURVEY ABOUT BEING JUDGED BY NURSES


Nurses

I feelt unconfortable with a nurse from the NHS in the way she asked me how I got the hepatatis C.
   
Healthcare workers (not ones in the liver units) can presume you've taken drugs. Even if this is the case this the case and have taken drugs it is inappropriate to openly judge a patient.

The nurse at my GP's practice made comments about how I didn't deserve it, "not like that Amy Winehouse..." Nobody deserves Hep C!
   

You are deemed inferior and it is as if you are prejudged to be an addict or person of low moral standards
   
blood taking nurse informed me it was only drug addicts that got itat my local hospital.
had to leave last job because of hcv i was working in a canteen

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john s
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Posted: 22/02/2009 10:25 AM




As I have mentioned on another thread , I have yet to come across any stigma. I tell everyone and the usual response I get is " What is it?" if there is stigma towards me then it is behind my back. I sometimes think our fear of stigma fuels itself.

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yahooserious
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Posted: 24/02/2009 03:35 PM


RE: Comments the survey so far on judgement/stigmatization for Hep C - Interesting!

As a medical practitioner (but not a Liver/Hep C specialist) I've seen a fair amount of behind-the-scenes stigmatization of HIV patients, but less so the Hep C community. Unfortunately there is still a bit of  a hangover from the HIV/AIDS stigmatization in the 1980's/90s.

That's not to say some doctors (and maybe nurses) may not behave a bit awkwardly when they have to follow different protocols for what they call "high-risk" patients... Psychologically I think they don't like to have to differentiate between patients.

But no doubt there's a certain amount of stigmatization if you look hard enough...

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