Get the right emergency care for acute cholangitis when you need it
We are delighted to announce the launch of our brand new PSC Alert Card for acute cholangitis to help you get the right emergency care when you need it.
Acute cholangitis is a complication you can experience if you have primary sclerosing cholangitis (PSC). It is also be called 'bacterial cholangitis', or a 'cholangitis attack' or 'flare-up'. It isn't always easy to know if you are developing acute cholangitis or what you should do, because symptoms vary from person to person. Equally, it isn't easy for healthcare professionals either, especially if they do not have experience of a PSC cholangitis flare. Despite that, acute cholangitis must be treated properly whenever it is suspected.
Created with PSC Experts
After consultation with people affected by PSC, we created our Alert Card with members of the PSC Support Expert Panel and the UK-PSC Steering Committee to ensure the information in the card is relevant, important and useful.
Our PSC Alert Cards are designed to help you:
- recognise the signs of acute cholangitis
- understand what to do if you think you have acute cholangitis
- share important information about acute cholangitis with healthcare professionals
- receive the right treatment for acute cholangitis when you need it
Special thanks goes to PSCer Noelie Srivastava who created the graphics and everyone else who helped in the card's development.
Funded by a Grant from Maximus Foundation UK
Many thanks to Maximus Foundation UK for their £2,500 donation which enabled us to get the card off the ground after PSCer Kevin highlighted our work to the organisation.
Kevin was diagnosed with PSC in May 2017 and suffered with multiple acute cholangitis attacks, and frequently missed out on the emergency treatment he needed due to lack of information and expertise about PSC complications, despite Kev and his wife being well informed about PSC. As a result, Kevin suffered with life-threatening sepsis.
Martine Walmsley, PSC Support Chair of Trustees, said, "Because of Maximus Foundation UK's generous donation, we have been able to offer the Alert Card to patients without charging them. It is not unusual for PSC patients who suspect that they have cholangitis to be sent home from A&E, without being able to get the help they need. In some cases, these patients are rushed back hours later with sepsis.
"The main problem is lack of PSC expertise in every hospital. We know that it is not reasonable to expect every doctor to be familiar with our rare disease, which is why it is so important for PSC patients to be able to carry expert PSC emergency information with them. We are very grateful to all the PSC experts and patients who helped us produce our Alert Card.
"We hope that the new PSC Alert Card will enable people to get the treatment they need at the right time, support medical decision-making and, above all, avoid unnecessary hospital admissions."