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Latest News

This latest news is all about the App and your opportunity to get involved!!


Latest News

Latest News

If you have not already downloaded the App, click here to read about the App and to learn how to download it and how to use it.

For those of you already using the App, we need you to tell us about your experience. 

We are often told about negative patient experiences: e.g. under-dosing on Urso, liver biopsies, patients not being told their liver test results (even after asking!!), patients not being part of the discussion about second-line therapies, etc.  When we raise this, we face "yeah, but... where is your evidence?" replies, which is somewhat unhelpful.

So, we are asking you. You are our evidence!!  You live and breathe this every single day. You are the ones coming out of clinical appointments, sometimes deflated or feeling ignored, still not with the knowledge you seek.  So let us together collect the evidence. Let u use what we know, what we experience, how we live to improve the situation: not only for us, but for the generations to come.

So please, please, please fill in these surveys, use the app, become the answer.

The answer is out there. We have to ask the right people the right questions. You are the right people! We need your knowledge.

  • Meetings in Middlesbrough and Colwyn Bay | 27th February 2016

    Meetings in Middlesbrough and Colwyn Bay | 27th February 2016

    Posted: Feb 23rd, 2016

    On Saturday 27th two of our volunteers are holding meetings in their local areas. So if you live nearby or happen to be in the area, do pop along.  PBC Foundation Meeting in Middlesbrough Lynn Robson (Regional Volunteer for Cleveland)...
  • Meeting in Pembrokeshire | February 13th 2016

    Meeting in Pembrokeshire | February 13th 2016

    Posted: Feb 3rd, 2016

    Our Volunteer Jacqueline Aitken is hosting a meeting in Dyfed for our service users on Saturday 13th February 2016 from 2pm-4pm at the following venue:- CAFÉ RIO 19-21 QUAY STREET HAVERFORD WEST DYFED SA61 1BG These meetings...