Are We Fully Supporting Our Fellow Patients?

[Raphael84]

This is a topic that I wanted to address as an individual. Not as a representative or advisor of a doctor or clinic. But as a patient, that experienced loss at a young age and found great support and education on this very forum. It is a great resource.

The forum has grown and the content and level of education that is available today is better and deeper than ever. As is the amount of honest and transparent real patient reviews.

But I do have a concern -

We must remember that only a very small percentage of patients give permission to share, or share their own cases. As Im sure many of us can relate, hair loss can be a very painful and personal process and the idea of putting your photos out into the public domain even with blurred or cropped faces is a huge deal for many individuals.

I have seen many times on this and other forums where upon request for an update, a patient will add photos. Then they may receive some kind of receive negative comment or feedback. I could list many examples of this from many patient threads from a range of clinics and doctors. As a community and individuals, we should consider that by posting negative feedback that the patient will themselves see, may not encourage the patient to provide further updates. Therefore this is our loss. This doesn't mean to be dishonest and compliment a result that we do not believe in, but we all visit this community for support, education and /or patient results. For the community to continue to thrive and grow, we need to be that bit more conscious of how we decide to respond. It may just be a few seconds for the poster, but any such comments will sit with the patient for much longer.

We need to create an environment of support, that encourages more and more patients to post. I read a recent thread that sparked debate on why patients "go missing". Is it because they are happy and have moved on, or have a failed or disappointing result? Based on some of the feedback I read and lack of support to some individuals that are really exposing themselves on here, why would they continue to post? We are shooting ourselves in the foot. Generally, the very people who provide negative input, have not had surgery or have not shared their case, because if they would have, they would never consider posting negativity to an already vulnerable individual and situation.

This is different to if a patient shares photos and adds his concerns and asks for feedback, but even then there is an appropriate, diplomatic and supportive way to approach this.

Medicine demands honesty. Feeding false positives or false hopes, serves no long term purpose whatsoever. However, it tends to be the same individuals who post confrontational or non supportive content on many threads, and I for one do not feel that this serves anybody.

On behalf of myself and my understanding of how this forum serves, thank you to each and every patient who has shared their photos, cases, journeys etc. Know that it has really offered value for another person,  just as you found value in the exact same thing at some point on your journey. Let us play to our strengths as a community and continue to share, support and educate in a way that enriches and adds real value to each or our lives.  Tough truths and conversations will always need to be had in this industry. Snide, negative and dishonest accounts, not so much.

Edited April 19, 2021 by Raphael84

[WhiteyUK]

I totally agree... since I found this forum I’ve noticed a definite bias against certain clinics and especially Turkey (unless it’s one of the few recommended), and especially ‘hairmills’ .... me myself had a ht at a hairmill and couldn’t b happier 6 months down the line. You need support along your journey whether you went to a hairmill or the best Dr in the world. If I’d found this forum before my ht I would probably have went elsewhere as cost wasn’t a factor for me. I understand the forum members want to encourage to go to the best places but I think everyone who’s had a ht needs support especially when starting there journey. The recommended clinic reviews seem to get all the replies with support and encouragement while some others don’t even get a reply. Once a patient has took time to create a review and attach pictures the least they deserve is a few replies, something I try to do myself but I’m new to this and there’s  a lot more qualified and knowledgeable people on here.

 

[Melvin- Admin]

The reason why I can’t get behind a hair mill is there’s no consistency. You’re happy, but many aren’t as lucky. 

[ITA]

I fully agree with @Melvin-Moderator, I am one of those not happy with choosing a hair mill, but not so much because something went wrong (everyone, even the best surgeons have some unhappy patients),  but due to the fact that the clinic (Cinik) did not give me any support, on the contrary, it disappeared, it did not even want to understand what could have happened.

[WhiteyUK]

4 hours ago, Melvin-Moderator said:

The reason why I can’t get behind a hair mill is there’s no consistency. You’re happy, but many aren’t as lucky. 

Yeah @Melvin-Moderatori totally understand that, you recommend clinics for a reason,  I’m on about support and feedback regardless of which clinic uve attended, I’ve seen many reviews come up and zero replies. I had very positive replies and feedback so yeah I’m lucky.

[Huncholini]

I'm in favour of honest and constructive feedback. Hair loss is a painful experience and affects all of us, not just those posting reviews but those commenting as well.

What I'm not in favour of is disingenuous and biased positive feedback especially on threads with high rep clinics simply because the surgeon there is well known. It's misleading and useless for both the original poster and prospective patients.

That being said, I agree that negative and unconstructive comments have no place in this forum either.

[Raphael84]

I would agree. I think the key word here is constructive (a useful or beneficial purpose). Providing a harsh or negative comment is not particularly beneficial. There is always a more diplomatic, respectful and educational way to present the same message.

Hair loss is of course equally painful for both those posting reviews and for those commenting, but exposing yourself with personal photos and detail is quite different to anonymous posting.

Just to reiterate my point - "This doesn't mean to be dishonest and compliment a result that we do not believe in". This would have no value at all.

My original post can be interpreted however one prefers. I believe my point was quite clear in that patients who share their case are looking for support or an answer to a particular concern or question. They too are looking for honesty. However many inidividuals post without a seconds thought of the patient´s well-being. Working with patients on a daily basis, this is a concern that I hear frequently whilst some patients feel too anxious to share their case for this very reason, which for me is a real shame for both the patient and the forum community and is the motivation for my post. If more and more patients continue to feel this way, their motivation to expose their case may drop and we may have much fewer threads and cases to even have the opportunity to comment on.

In terms of disingenuous and biased feedback, this should apply to all cases and clinics regardless of demand or popularity. 

This industry can be a minefield with many disingenuous individuals, claims, clinics etc. We have to be diligent.

Whilst we will all have our preferred and "favourite" doctors based on their unique design and approach to surgery, many of the "higher reputation/reputable surgeons" have attained their reputation through consistency and hard work over a long period of time that have undoubtedly carried the industry forward. They are active, transparent, share cases and provide education that can be very valuable for many individuals and the community as a whole, not only their patients. 

For myself, it is a matter of empathy and respect toward patients who share their cases.

Edited April 20, 2021 by Raphael84

[SLA]

Very well said @Raphael84

[sl]

 

Totally agree.  I would add that I think faceless people who open accounts, snipe, then go, are not good for the forum nor patient nor anyone really and are easily spotted, they do not fool anyone really, despite their claims. It is a shame some resort to this activity rather than adding valuable content to educate and encourage. Tearing down is always easier than building and takes no talent nor time, building takes both and it is good to see here the genuine posters, patients, and above all a forum moderator who is putting his passion and integrity here and for me has really brought this community on.

Patients from all clinics need a safe place to share and not be attacked due to being clinic x,y, or z, or indeed clinics or individuals should not be attacked by shills. Clinics who use them should ideally just educate, make videos, share cases and maybe that way would build a reputation for themselves and I applaud all and any clinic that spends time here to educate and help and seeing some doctors also doing it is really nice and helpful for me also to continue my own personal learning if I am honest.