A Robert Rant!!

[PBCRobert]

Hi, all.

I hope you are well.

We have been focussed on patient support during Covid. Hopefully you have seen our webinars, our 4pm (UK time) chit chats on facebook, and the like. Our helpline has been busy also.

As things have settled down, I have noticed I have been spending time helping people unlearn what they have learned, or dealing with peoples’ fear and lack of knowledge again. Some of what we are correcting has been patients’ views on stuff that is just wrong. It is a difficult situation.

So here is my appeal. Please join the Foundation. Not for me. For you. We have a website crammed full of information in multiple languages. We have a quarterly magazine sent you to physically or by email. We have an App that can help you self-manage and also help you be part of the answer to many of PBC’s questions. We have a helpline where we can help you directly with your questions, also run 24/7 for emergencies. We have leaflets and books on our website free for you to download.

We have so, so many services that can help you directly with your PBC journey: all if which are free to you, at no cost, requiring no fee. (did I mention they were free to patients??)

We have thousands of patients registered with us from over 75 countries around the world making us the biggest PBC support group out there. We have written lay guidelines for use in both Europe and US.

I have seen some of the recent discussions: here and on fb groups and I can’t help but wonder why some of these questions are being asked of other patients.

Peer-to-peer support is vital in PBC, like many rare conditions. We have worked hard to build this community here on Health Unlocked, which is the exemplification of all that is good in peer-to-peer support, and it now sits at over 8000 people.

There are questions that require opinion, or experience, but there are many questions that need the expertise of a clinician or a patient advocate. (Those already registered with the Foundation know we do a weekly webinar where you get to ask directly a world renowned PBC expert clinician your questions)

We can help.

So, please. Join us. Be part of the community. Learn what you need for your own PBC journey.

We can help. And we do.

Yours, as ever,

Robert.

pbcfoundation.org.uk

[June9961]

Hi Robert, I must admit that I am one of those on the fb sites. However you will find I always refer and advise them to join the foundation. 😀

[PBCRobert Partner in reply to June9961]

Thanks June.

I don’t mind people being on fb groups (I am in some also) as they can be helpful for certain things.

[June9961 in reply to PBCRobert]

Totally agree. My worry sometimes is that some of the people on fb like they were an authority and they are not. Some also comment that you die after a set amount of years once diagnosed!? I also do not like how some advise in certain faddy diets and alternative medicines. I always say speak to their consultants or contact yourselves.

[gwillistexas in reply to June9961]

June9961...so true. I found also, that in the other groups, there seems to be one or two who want to run the show. For me, this is home. I joined when I was diagnosed in 2017 and intend to stay. This is by far the nicest most respectful group I’ve come in contact with. 🦋

[ninjagirlwebb in reply to gwillistexas]

I don’t bother going to the FB groups...overly melodramatic vibes. Here is much better...well thought out posts supported by facts mostly.

[butterflyEi]

I joined this group back in 2014 although diagnosed in 2006. I have learned much over the years from the PBC Foundation and other sources. One of the biggest lessons perhaps was how to interact with the medical profession, although even now I sometimes struggle. Many times I have thought how different my diagnosis would have been had I been lucky enough to have been referred to Prof. Neuburger or one of the other specialist with whom the PBC Foundation interact. Were it not for the conversation with the PBC Foundation back then I would probably still be taking my medication incorrectly.

Although I have not been able to join in with all the activities the PBC Foundation has been offering during lockdown, particularly the weekly webinar, when I have I have seen how hard you work for the benefit of us all.

I still struggle using the App but I am sure that is me with new technology.

Thank you PBC Foundation for being there for us.

best wishes

[Bramleyb in reply to butterflyEi]

I don't find the app very user friendly so haven't used it for months (though my GP is reluctant to tell me all my blood results anyway). I did email the foundation asking if there were any instructions on how to navigate between the different areas and retrospectively add blood results etc but never got a reply. Then CV19 reared it's head so didn't bother following it up.

[butterflyEi in reply to Bramleyb]

I am in the UK, I always ask for a print out I may not be able to read the results but I can see what the results are relative to the parameters over the years it builds a picture I keep mine on a spreadsheet on the computer

[PBCRobert Partner in reply to Bramleyb]

I am sorry you did not get a reply. I do know we made a number of changes to the App usability but yes: everyone can backdate their inputs.

I am happy to talk you through the App if that helps.

[Bramleyb in reply to PBCRobert]

Thanks Robert - is there any written guidance as I'm likely to forget? I have got to various parts of the app but after pressing various buttons so I can never remember how I managed to get there 😊

[PBCRobert Partner in reply to Bramleyb]

Good question. We have a series of videos which are on our social media channels (I think) but no written guidance. I would be happy to go through it with you any time.

[Ackie123]

Hi Robert , although I have the app I've never been able to log on . I've tried everything .

[PBCRobert Partner in reply to Ackie123]

Sent you a PM.