What Health Care Professionals Really Think About You

[jmjm530]

Somewhat disturbing but not surprising.   During treatment, I definitely noticed some predjudicial treatment with some of my doctors. Because of this, and now that I'm SVR,  I may swap specialists in the future and not inform them of my HCV past unless I think it important for my medical care.
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Health Professionals' Attitudes Toward Caring for People With Hepatitis C

http://www.medscape.com/viewarticle/562730_1
(Free Medscape registration required and highly recommended)


"Conclusion: To provide quality health care, HPs must acknowledge that their knowledge and attitudes impact on their clinical behaviour. The current study suggests HPs' hepatitis C knowledge and attitudes influenced their self-reported clinical behaviour toward people with hepatitis C.

Although HPs' hepatitis C knowledge was satisfactory, significant knowledge deficits about sexual transmission, treatment availability, interpretation of diagnostic tests and mortality, were identified. These knowledge deficits have the potential to negatively affect the health behaviour and health choices of people with hepatitis C.

Many HPs felt anxious about treating people with hepatitis C, in particular they exhibited fear of contracting hepatitis C and disapproval of IDU. Additional infection control procedures were adopted by a significant proportion of HPs, which resulted in people with hepatitis C being treated differently from other patients.

If a person with hepatitis C cannot rely on HPs to treat them in a nondiscriminatory manner, they are less likely to consult HPs and follow their advice, which could have long-term health implications, such as increased risk of advanced liver disease, unnecessary transmission of hepatitis C, and poor physical and mental health."


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[Whrose]

"if we ourselves are having issue with shame or stigma how can we expect people who have not been personally touched by this illness not to"
MOM....well said. your story is inspiring. thank you for sharing it. i second alagirls happiness for you and your daughter.

fightit. beautiful note and to the point. this last month some friends made thousands of dollars in fund raising for breast cancer. for years women held much shame connected with this disease and hid in the shadows, but look at how they reached out in the last years to promote their passion. not to mention how the hiv community faced their stigma. during it all i thought why not for hcv?  i know we can loosen the stigma when we unite together to fight this disease and raise others support. wearing the face of hcv can be a beautiful thing if we have the courage to show it to others.

i am celebrating your attitiudes and with them we can take hope up an octive or two and change our battlefield to community support.  speaking out about our own fears is the first step and i love that this post has opened up the dialogue.

hugs    Whrose

[alagirl]

so that's awesome news on both fronts!  Congrats.  sounds as though you've had a long hard road, its good you're finally getting good news.  And I know that like all parents your daughter's SVR meant more to you than anything.  And throw away the guilt on that front.  Wasn't your fault, and its not a very handy emotion.  Doesn't help anyone at all.  very happy for both of you!

[mom713]

Thanks. I am another PROVE 3 participant. Undetected since week four.

[alagirl]

That is so wonderful on your daughter's SVR.  

[mom713]

  New to comment: Keep on fighting,      In my experience physicians that are professional and knowledgeable have no problems treating Hep C patients. I have made a point of bringing Hep C literature to both my dentist and internist. I talk about  it every chance I can.    
Sixteen years ago I was diagnosed with Hep C, two weeks later our daughter was diagnosed. She was three at the time. I made it my business to learn everything I could  about Hep c.  I didn’t have time to think about, let alone care about what other people or treating professionals thought about Hep C.  I had to get educated so I could protect and advocate for my child . The information for treating and managing pediatric Hep C was extremely limited back then.  We decided not to treat our daughter and wait for better options.
I began the usual treatment three shots a week with ribravarin. It didn’t touch my viral load. Nothing we tried did.   It did  however continued to increase over the years,  as did my liver inflammation and fibrous. I never felt any shame about having Hep C. I had a lot of guilt for passing it to our daughter.  Over the years I have talked openly about my Hep C.   I am not aware of anytime our daughter or I have been looked at with judgment or fear.  When our daughter’s  liver biopsy  indicated progression and we had to make a treatment decision. We had a very aggressive Pediatric  Hepatologist who convinced us to treat and who was willing to adapt protocol so we could know earlier if she was responding.

  One week into treatment (pegylated interferon and ribravarin) she achieved SVR. She remained on treatment for twelve months.  She ended treatment almost two years ago and remains virus free. Educating is the most powerful tool we have in combating the ignorance surrounding this virus. If we ourselves are having issues with shame or stigma  how can we expect people who have not been personally touched by this illnesses not to. .
Question 21:ALSO    Hep C virus is virulent and unlike HIV it can live outside the body for up to six weeks. This increases the chances of  exposure or contamination.  The HIV is fragile dies pretty quickly outside of the body.

[alagirl]

We are all in this together, like it or not. It doesn't matter how you got it, here we are, fighting for survival. Our enemy is this virus, and the ignorance that goes with it. fightit.
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Preach It!

I couldn't agree with you more.

[fightit]

Many want to blame somebody for how we are perceived or treated. The fact of the matter is we all are discriminated against in many ways throughout our lives. Some people blame the HCW's for their mistreatment. It happens, it's happened to me many times, and I am one. It's people, they are no different than in any other profession. The majority of HCW's are caring people, but some are jerks. Hep C patients aren't the only ones who have had bad experiences with the health care system, or the insurance companies, etc.
There's plenty of blame to spread around if that is what you want to do. I think the biggest problem we have had, and are presently facing is that for the millions of people that are infected with this disease we don't have the loud voice that many other diseases have. The former Sugeon General C. Everett Coop stated that it was an epidemic that it is the number one health care problem facing America. It fell on deaf ears.

It has been called a silent killer. How true that statement is. As long as stays hidden from sight then any hope for people to understand it and change their perception of it and us is nill.
The reason we have telaprivir and other PI's is because of the research that was done with HIV. They have a voice, and lots of money from constant fundraisers and government grants.
I pray that we will not remain silent. Silence is not golden when it comes to fighting this battle.
But then I believe in being proactive, and I really don't fear man and what he may think of me. I don't fault anyone who wants to keep their hep c a secret. I choose not to. If you want to treat me with distain then I will turn the tables on you. Everyone has to answer to someone.

We are all in this together, like it or not. It doesn't matter how you got it, here we are, fighting for survival. Our enemy is this virus, and the ignorance that goes with it. fightit.

[Whrose]

your point is well taken. and you are quite within your rights not to disclose medical information to your provider. in practice i have found patients that do this are not serving their best interests or the best interest of others delivering care.  i am glad to hear you speak your mind although i do disagree with you.
one of the aspects of making comments is often they are not taken in the context of the maker. i am sorry if i did this but i have often heard similar sentiments and although i placed the adjectives it was in reponse to the thought that healthcare workers with hcv would endanger you or others by their non disclosure and to perhaps describe why they do not in context of a medical relationship.

best of hope and care to you as you journey with hcv.
Whrose

[Liz50]

We've been both lucky and unlucky, I guess, our dentist is a doll--he wouldn'care if we were falling down with leprosy, he'd treat my hubby. He takes precautions with EVERY patient. Our GP is really skittish to even SEE my hubby and has done more "phone" diagnosis as she can possibly get away with. Hubby's own hepatotlogists never see  him, unless it's clinic time, everything is handled by the nurse coordinater and altho her OWN HUSBAND has hepc and is awaiting a transplant, she is no freakin'ray of sunshine, she treats the patients like ****. Hubby has not even told his own MOTHER...that is how sure he is she will totally freak out over this disease....and since he looks so awful from the TX she keeps calling me and haranguing me about "what is wrong with B?" I won't tell her if he won't--he won;t becasue she'll freak and probably won't let him in the house--maybe that'd be a good thing. I don't know.
We had a health screeing at hubby's work yesterday and the woman taking blood for a quick cholestersol test was not even gloved up. HUbby was behind me in line (but in another room) and I said "You should glove up for each separate person" she said "I know my job" and I said, "Well the guy coming in here after me has Hepatitis C" She could NOT have pulled those gloves on fast enough. Asked me if I had it too, she almost passed out waiting for my response. I let her simmer for a sec, and said, "No, but you REALLY should be gloving up" and she said she would, from now on.
We have lost a lot of people we thought were frineds when hubby "came out" with his illness. Just couldn't deal with it and figured it was super contagious. I guess they weren't great frineds after all.

[Myown]

we are people who follow a calling for many reasons and they do not include catching diseases while at practice
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my point was and is that HP's do not disclose that they have hep c and IF we go to a doctor where there is no reason that the doctor would have to know, then IMO if someone chooses not to tell their doc I don't think there is anything wrong with that because as I stated HP's don't tell us.FWIW EVERY doctor that I have gone to I have told mainly so they have my history. I would hope that the same precautions that they use after I tell them I have hep would be the same precautions they take for everyone.

And as far as the excerpt above of yours that I pasted...I did not say that you were following a calling to catch diseases - that is really taking what I said out of context.

A policeman takes on his job to enforce the law and in doing so he might get killed. Did he go into the job to set out to loose his life? No of course not, but he might and he knew that but still felt the calling and thats just it, a 'calling is a calling,' people who are truly called - a heart felt type of thing are the only ones who can fulfill a job that to others may seem 'scary.' So for a nurse to imply 'hey you don't want to catch a disease so why should I is the same as a cop saying hey you don't want to get killed by a bullet either so why should I as a cop have to, I don't want to die...well Officer you chose the high risk job and it comes with the territory.


And I am not making you out to be a monster who looks to infect people. I don't know where you got that from. I think most HP try to do their best to keep themselves and the patient from being at risk.

[CockSparrow]

In Australia no one is obliged to diclose their HCV status to anyone. there are some exceptions such as life insurance. All HCWs and businesses are supposed to practice infection control and be blood aware. One of the reasons for this is that 80-90% of us dont know we have the virus when we catch it and it takes 13 years or so to be diagnosed with it. So asking a patient whether they have HepC doesnt make for safe practice it risks transmission from all the people who dont know they have it. Its not just HCV that infection control protects people from either.

My favorite was the best way to prevent transmission was to not treat anyone with HepC. Classic.

HepC is more contagious than HIV (10 times, i think) but I would also accept that HIV is because its sexually transmitted.

CS

[alagirl]

I don't expect doctors and nurses to share that info.  I share it with them because its part of my health history and impacts my care AND because I want to defray my risk.  I DO, however, watch every phlebotomist who takes blood from me like a hawk, always have, for any misuse of instruments or equipment.  Not necessarily because I fear they will nick themselves but because I don't want to be infected by the last patient to sit in the chair I'm in.

Many lab workers in my area are not nurses and run the gamut from excellent to abhorrant.  My stepdad has worked for years in EMS, so I guess I respect health care workers who so often do have to come into contact with contaminants. Its like any other job.  I respect those who do it well, and not everyone does.

[Whrose]

i have heard this sentiment before and thank you for another opportunity to address it.

as a practicing nurse i am not obligated to disclose my personal information to you nor is it professional for our relationship to be about me. the patient is coming to me for nursing care and i can deliver this with 100% confidence and skill.  if i can not provide you the best of care and safety then i would not be in practice and not be able to pass my yearly physical. once more i am more at risk from you than you from me! truly i would not practice if i knew i could infect you or others...what kind of monsters do you make us?

also when i became a nurse i did not sign on to catch every infectious disease out there and when risks were made known to us, workplace safety improved. no thank you! i am not keen to accept your viewpoint of risks and find it offensive. we are people who follow a calling for many reasons and they do not include catching diseases while at practice.

Whrose

[Myown]

I go ahead and tell health care providers because it would personally devestate me to be responsible for infecting someone else.
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But ya know what though,,,you will never be greeted by a doctor who says "Hi I'm doctor Williams before I examine you, I just want to tell you I have Hepatitus C.

We know that there must be doctors that have it and nurses too of course and we know they are never going to give that information to us and IF they did, we might watch what they do a little bit closer just to make sure they don't accidently stick themselves before they draw blood. But with us, we didn't go into the health care profession and they did so they shouldn't shy away from us cause they knew the risks before they entered that field of work.

[Whrose]

yes you are absolutely right healthcare professionals should treat everyone the same no matter what disease they have. but people are people period, no matter what profession they are in.  we have the right to walk away and file a medical complaint to their board of practice and also to the hospital they are are associated with. personally if i get an attitude or breach of practice i would not want that one caring for me!

universal precautions were one of the best of practice standards to improve safety and also protect ancillary personel who have no access to medical records and may come into contact with blood while preserving patient privacy rights. as far as the dentist comment the only thing i have to say from working in bloody situations is that there is uncontrolled splash at times in these situations. in a perfect world there would be personel to clean and  time to secure the area's however show me a perfect world. i feel this dentist may be trying to be more safe then discriminatory.

you have a good point why you would withhold medical information to providers and it is your choice. but i ask you to examine your motives closely. i am not preaching, Lord i certainly can not do that well. are you not buying into the stigma and fear associated with hcv?  i also think it may be irresponsible as your blood even with SVR has not been established to be un-infective. there are still providers who are sloppy and accidents do happen when working with blood.  while it is easy to say its their problem, it could be reasoned that you knowing and withholding information have placed another at risk especially when that accident one could have immediate follow up and a better prognosis. i am quite sensitive to the need for privacy and every ones level of comfort in telling others and i support privacy. but not disclosing to medical providers does not sit right with me as i believe it is a relationship built on trust and responsibility going both ways.

to finish i have to say this...we've come along way baby! why let the medically socially inept determine your  ethics?  while i have noticed some fearful reactions from my peers i have to say their personality characterisitics preceed them in every situation.  for me the real hurt came from family and friends who were nasty behind my back. whew..it took alot of patience to deal with them.

i cannot argue there is no discrimination. but i believe this is a run in the fabric of our society and unfortunately will not be solved only by education but by not being a victim to others and taking a stand for your rights and dignity.

Fightit....way to go! best of practice to you...you are doing good things!

hugs    Whrose

[alagirl]

For instance.  I was sitting in my pain clinic's waiting room the other day waiting for my entry appointment and trying to guess which patients were just going to immediately sell their drugs as soon as they got their scrip and who really needed to be there.  

And who really needed to be there but was probably going to sell their scrip anyway.  I've seen that happen before a lot too.  It was a way to pass time.  I used to be a social worker so I'm pretty jaded.  

It's not really fair from a health worker perspective though to "patient profile."  Everyone really does deserve to be treated the same.

[alagirl]

I go ahead and tell health care providers because it would personally devestate me to be responsible for infecting someone else.  And I have to agree with the health care providers who talked about their level of rage at finding out they were infected.  I can identify.  

However, it absolutely IS the responsibility to treat everyone the same in terms of precautions.  I was no less contagious prior to finding out I had hepc (allbeit a scant six to eight weeks it was).

Since most hepc'rs are not diagnosed early, it should be the assumption that any patient could have hepc or other bloodborne disease for that matter.  It should, I suppose, go without saying that judging books by covers in healthcare is a fairly disastrous method of disease control.

[R Glass]

I have mixed emotions on this issue. Part of me knows it’s my responsibility and obligation as a human being to inform my HCW’s of my situation (and I do). The other part of me knows, it is their responsibility and obligation to themselves to treat everyone as if they may have a blood borne virus and to protect themselves.  

[jmjm530]

Fightit,

Thanks, and it's hard not to appreciate and admire you're approach to this, as well as your work. You certainly do the rest of us a service.

All the best,

-- Jim

[fightit]

I educate the Dr.and nurses and other HCW's every day. Very few people know much about it. I didn't either until I found out I had it. I don't care what they think of me, I want to get the word out to as many people as I can. And yes lots of people treat me differently when they found out I was hep c +. It's mostly because they don't understand how hard it is to contract it. No one in my family has it. It just about needs blood to blood contact, unlike many other diseases.
I will continue to tell all I know, to as many people as I can, so that those coming after me may have it a little easier than we do.
Jim, I always enjoy posts and your opinions. fightit

[jmjm530]

Fri: Doctors and dentists who treat hep C patients the last in the day make we wonder if they follow standard procedures.  It is more likely that I could pick up something from another patient than they could "pick up" hep C from me.
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Yes, very true. And my concern level has risen since treatment has really emphasized the consequences of getting these sorts of infections.

Whr,

I respectully added your name to this post and do respect your opinion and attitude. However, Frijole makes a very good point. Shouldn't health care professionals treat everyone in a similar fashion -- not just for their sake but for the sake of the other patients? With Hep C, for example, I believe only a small per cent actually know they have it. That means a lot of HCV positives out there who will not inform their health care providers because they don't know.

Again, moving forward from SVR, I plan only on telling when I think my HCV background might be helpful in helping me with any future medical problems. And frankly, I can't see of many instances.

For example, I told all my derms about the interferon, etc, but in the end they treated my skin conditions pretty much the same as they would anyone else with the same conditions, albeit not suggesting liver-toxic drugs, but that's something I can watch out for. Same with my cardio guy and others. Fact is most docs who aren't in the HCV field, know so little about HCV that telling them you've had it is pretty uselfess.

Finally did see a derm (number six or so) where I did not disclose my HCV past, and I was treated pretty well. Maybe just coincidence.

-- Jim

[fightit]

I too am a HCW and years ago I injected my hand with blood when the needle went through the blood tube and into my hand. I went to the ER to have my blood drawn, they told me nothing to worry about, I would probably be fine. Many years later, with liver damage, I am now in treatment.
When I found out I too was angry. However that's the price you pay when caring for sick people. I wish I had been more careful but that was then and this is now. I still work at the hospital taking care of prisoners, homeless and illegals on a daily basis. My blood counts are getting very low making me more at risk for contracting a number of other diseases. However my family needs for me to work. It's the hand we are dealt. I'm not complaining, I'm thankful to
God for my job and I will be here as long as I can.
I'm sorry Whose, I hope and pray that you beat this dragon. I enjoyed your comments, you are much more eloquent than me. fightit.

[Forseegood]

Tele: he he he, now why dont you put that in your profile pic? now we're saying something!

Whrose...I admire you for your actions. I try to take it on a case by case basis myself, but like what youre doing.

Frijole: don't you have some really respectable job? you'd think they'd be factoring that in. Kinda hard to have people who probably couldn't maintain a proper conversation with you treat you like that...I don't believe in snobbery, unless they are Buttheads of course!!!.

[Whrose]

quite an interesting conversation.  i am a HCW who got hcv from work. in the 80's i worked in a trauma ER and that was before universal precautions were placed. at the time so many of us were really unaware of the risks. i remember having to walk across the ER to dispose of a needle. when trauma's would present at the door no one had gloves and used bare hands to stop bleeding(along with guaze) etc, when some one would vomit blood or have an arterial bleed i did not say ah wait a minute till i get gloves and a face shield on, also cleaning up after surgeons and oops ah there is where that needel went!  in those days nurses, especially in my field of practice got tntc needle stick exposures! as infection control policies improved in the next decade the risks were definitely minimized. however close adherance to those guidelines were slow to come to many nurses.

now days healthcare practice is safer than ever when isolation precautions are followed by team members. although i still see many sloppy observation still in the ER and ICU. because of this i can say that in certain settings when staff are working on bleeding conditions a head up is given but this is always done not in patient earshot. unless you work daily with infectious diseases i don't think any of you understand.

when i was first diagnosed i was angry! angry for placing myself and family at risk! angry at patients who hide information that would give us alert to better practice. angry for the lack of procedure and knowledge that would of protected me! yes we all should practive precautions to the letter P but in the demand of practice and triage and when some one has life threatening emergenicies the focus becomes on saving lives.

since i have been diagnosed i decided i could approach it different ways. i decided to be open and put my disease on the table to my co workers! first not only to be the example of their vulnerability to infectious diseases and the importance of good practice. but also to be one of the faces of hepatitis c and to confront their fears and predjudices. i used my journey as a means for education on hcv facts.

i have to admit since i came out of my closet my peers have been quite open and supportive.  
HCW have a way to go in understanding our challenges with hcv and treatment.  your trust in us i hope will be based on truth and not in judgement of our weaknesses. while they are many types in practice that abuse patient trust the majority have a true heart in delivering care to you and yes we do place your safety in front of ours. i will say this that never in over 30 yrs of practive has it impressed me on how dangerous my job is. we do not place this danger on your feet but challenge ourselves to better stewards of infection control for your safety, for our safety, and for the safety of others.

well i guess there are 2 sides to every argument and this is mine. BTW as devastating as this infection was to me i am proud to be a part of this community and have met so many wonderful people during my travails. i am quite focused while on the other side of the bed to advocate for all of us and encourage a true dialogue. it starts with being truthful and aware that any stigma with this disease is one that you will buy into or not. for me...i choose not! i wear the face of hcv for anyone who looks at me and lol...i am so much more!

sincerely    Whrose