Name Change

[June9961]

Can anyone please confirm whether PBC has changed now to Cholangitis instead of Cirhosis. My GP seemed to think so but I have just read on another site that LiverNorth have just posted a notice stating it has not changed. Confusing or what😳

[Kimmy1972]

Hi yes it has I was diagnosed 9 weeks ago a professor at my uni told me and doctor

[Hidden]

Hello June9961.

This name change of the letter C to Cholangitis was apparently finalised and made to be used universally earlier this year.

I receive newsletters from Liver North and actually emailed them myself later last week as I'd not read anything about a name change and they are still using Cirrhosis at the end. I received a prompt email back stating that at some point the name change will take effect with them but at the end of the day as I have to agree, the condition remains the same it is just about the final word of this.

I didn't agree to the name change that it is. My first thought when there were 2 suggestions was the cholangitis means something that isn't long-term. I automatically thought of tonsillitis and gastro-enteritis to name but 2 and these seemingly something that are quite temporary.

My GP surgery haven't altered my records to the new terminology and I am going to wait until it is mentioned when I go re PBC. My scant online records that to me are a waste of screen still show the previous terminology.

At the end of the day I am not that bothered, I've still got something that is currently incurable and apparently 'long-term' (prefer to the word 'chronic') and that will have to be dealt with so.

[PBCRobert Partner]

Hi, June.

I can confirm that, like it or not, the name for PBC is Primary Biliary Cholangitis.

The reasons for the change have been discussed on various other threads so I won't go back into them unless really pushed.

So, where are we?

Well, in an almost unprecedented move, a position paper was published at the same time by Hepatology, Journal of Hepatology, Gastroenterology and Gut journals, possibly others indicating the new name. This was co-written by such luminaries as Ulrich Beuers, David Jones, Keith Lindor, Robert Gish, Atsushi Tanaka and Raoul Poupon amongst others.

The new name has been agreed for usage by EASL, AASLD, APASL, the German gastro organisation (the name of which eludes me at this moment) again, amongst others. Medics and patients in UK, USA, Canada, France, Germany, Japan to name but a few are using the new name.

Healthcare professionals in the UK are being made aware of the current name.

Biotech companies such as Intercept are using the new name internationally (looking to make available OCA as a second line therapy).

I have just been on LiverNorth's website and I have seen no such statement re the old name. I know they list themselves as a regional organisation but, given their medical partnerships, I would be very surprised and a little disappointed if they weren't at least aware of where we are internationally never mind raising awareness of this profound change which positively affects patients.

What hasn't happened to date is a new name in WHO and the soon to be published ICD11: I have been assured that these are time and due process isssues.

As the world's biggest PBC patient orgabnisation, we can assure you we shall be doing our best to raise awareness of PBC around the world and continue to advocate on patients' behalf as well as continue to offer world-leading services:and that does include working to ensure as many people as possible know the new name. We have leaflets available if you would like to join us in this.

As an aside, it has been an incredible experience for the staff at the Foundation. As I am sure many of you know, we spent time going round the UK education healthcare practitioners about PBC, symptoms, diagnostic tools, and therapeutic tools, etc. We have only been at a couple of events since the name change but the difference in attitude, EVEN IN FULL TIME PROFESSIONALLY QUALIFIED HEALTHCARE PRACTITIONERS!!

I apologise for shouting, but it has been breathtaking. Whilst we always managed to get the information across, initial comments are no longer phrases such as "We don't deals with those people" to, "Wow, I really need to know about this." Even with all the benefits we knew would occur, and the improvements in patients' experiences, we didn't anticipate this much of a sea change with HCP's.

Yours, as ever,

Robert.

[boneytoys in reply to PBCRobert]

Well said and I'm glad you shouted ; your positivity is INFECTIOUS,

[Junolee in reply to PBCRobert]

Thank you.

[teddybear7 in reply to PBCRobert]

Hi Robert hope you are well. I'm a pub landlady so can imagine the comments I have had with the word cirrhosis!! I have just used PBC for a while now. It was easier. Can you tell me if it's now so universal why it still refers in some parts to cirrhosis on the foundation's web site. & when we can have new leaflets that project the name change and do not still refer to cirrhosis? If we're going to be positive with this then we need to be positive in all area's. Cheers T. X

[PBCRobert Partner in reply to teddybear7]

Hi, Teddy.

Great Q's, thank you.

I haven't checked every page on our website but my understanding is that cirrhosis has been changed with regards to PB cirrhosis, but not if we are speaking about cirrhosis, i.e. scarring.

That said, we have been waiting for the last few weeks to roll out our brand new website- we are just awaiting final confirmation from developers that it is ready.

WE HAVE LEAFLETS.

Call the Foundation and to can order as many as you like or need.

[phone]

Yours,

Robert.

[teddybear7 in reply to PBCRobert]

Hi Robert it was just that the leaflet example still had cirrhosis as it's title & part if the description on the front page that flashes up still called it cirrhosis. But if you've got a new one coming then that's all boxes ticked yipee xx

[PBCRobert Partner in reply to teddybear7]

That's a great point well made!!

Our bad. I shall check the new site links to the new leaflets.

Thank you.

[Dese in reply to PBCRobert]

Hi i only found out I had pbc about 6 weeks ago. I'm glad the names changed when I was telling friend and family what I had know one had a clue what it was and just thought I was a drinker.

[June9961]

Hi Robert, I thought it had changed but before I got into an arguement about the change I thought I would check. It was posted on one of the fb PBC sites and it was on headed LiverNorth paper. I said I would check with yourselves first. I would send you a cooy but I'm not sure how to do that. 😏

[butterflyEi]

When this was posted on the LIVErNORTH Facebook page I wrote to them saying how confused I was - here is the reply posted on their FB page.

Thank you ******* for your comment but we consulted the NHS in the UK and our own medical advisors. As you can see from the link, AT PRESENT they are using the traditional, accepted name. I did say we would advise again if we thought a change was 'official' for the UK but our advice stands. If you are browsing, look for Primary Billiary Cirrhosis. The change is by no means universally accepted by the way and there are problems with the new name too, especially for people who actually have Cirrhosis following on from Cholangitis.

My view is that it will take time for Cholangitis to be changed on any/all websites so when browsing just using PBC is sufficient to find our complaint. Browsing through Bing and using PBC as the search string directly goes to Cirrhosis and not Cholangitis. There are many articles on the web that will need to be updated.

For myself I am pleased for the name change whether or not NICE have yet to embrace the change. I don't have cirrhosis nor do I have an "inflammation", what I do have is a disease attacking my body which by virtue of being given the name cirrhosis has labelled me as an abuser of alcohol and prejudice from some which is unfair. It also makes it difficult for family and close friends to understand why one is not "unwell".

Thank you Robert for the clarification - change is always slow in coming.

[chrissey7]

Well said Robert I for one was not happy with the lack of knowledge linked to the word cirrhosis when diagnosed with pbc like you said when the world start using the word cholangitis maybe the fact we are not all drinkers will begin to sink in

[PBCRobert Partner]

Thank you all for your replies.

It will take time to filter through all of the processes of different organisations as each of them go through due process. I am not sure changing the NHS website is as simple as calling a guy on a Tue and having it changed by the Wed afternoon.

For the record it has nothing to do with NICE. In our last meeting, they asked if they could use the new name yet!!

Change is filtering through. Many medics around the world are already using the new nomenclature. (as an aside, has anyone seen the public version of any of the journal pieces? If not, I shall try to link to them when I am in the laptop.) We know it takes time to filter through, especially world wide! Is it helpful to patients to decide not to use the new name? Does not using the new name help with the drip-fed progress of change?

In terms of browsing, the interweb has been citing the old name since its inception. Of course the old name will have more search results. Consider this- will it bring up the latest research? Will it bring up the newest treatments?

Look up the old name and you will probably find the old information we have been trying to counter since our own birth 19 years ago- you know the nonsense that says you have 5, 7 or 1O years to live.

PBC is moving on. The whole world has changed, even in just the last 5 years, to an unrecognisable place for those affected by PBC. There are earlier detections, better care pathways, better understanding and knowledge, more medications and more research than at any other time in history.

If you want to live in the good ol' days, I respect that. But I beg you- come with us. Live the changes. Be part of the "silent revolution" (as written by a Newcastle hepatologist!). Be part of the progress, of the solution, of this ever-changing landscape.

[Dese in reply to PBCRobert]

I would like some leaflets with the new name on it. I only have one which I took with me when I had 2 hospital appointments. Both doctors said they have heard of it but don't know much about it. Queens hospital in Romford Essex said they will order some leaflets. Let's see if they do. I'm happy taking my leaflet wherever I go. The doctor was happy to just sit and read it just asking me a few questions the nurse also read it wrote down the name so like I said lets see what happens.

[FullEmbrace]

I love your passion and advocacy Robert. So well said. I was one of the many many people who unfortunately read some old info on the internet and thought I was facing a liver transplant or worse in 10 years time. Thank goodness my Hepatologist settled that right away by bringing me up to speed. Then I found PBC Foundation. You guys are outstanding. Keep up the incredible job of education and support that you provide at a global level. you rock!☺

[PBCRobert Partner]

FullEmbrace, thank you.

Dese, and anyone else who would like leaflets, contact the Foundation on [phone] and we shall send you out some leaflets.

[fluffpuff64]

Just wanted to share this with others due to recent name change. For the first time since diagnosed with in 2013 I felt relived and happy of the name change.

I was sitting in my local blood clinic waiting for a blood test due to being in hospital recently as my illness had flared up. When my consultant I work with (an a mental health nurse) spotted me sitting there and said in a loud voice how you doing ? I heard you were off sick . Is it your primary biliary . . Wait for it . Yes he used the new name. Impressive I thought. Better still no embarrassment as I would of before. I sat there with relief and no awkwardness . Obviously am not happy am ill but happy the awareness is out there already and how just a name change can make such a huge difference and feel am no longer being judged. I have to say I was sceptical originally but from this experience am very grateful for this name change and am sure it will benefit all of us in some way. So thank you to all those involved to getting this sorted. Just need to carry on with the awareness now as my recent a e department didn't have a clue. Good luck everyone best wishes xx

[mollymom]

I went to a top PBC expert in NYC 2 weeks ago and she said the name was changed. Thank goodness!!

[Pops43]

Yes it has changed for the better description see the pbc website and converse.