Right now, thousands of people with pancreatic cancer don’t have access to a simple prescription called Pancreatic Enzyme Replacement Therapy (PERT, also known as Creon) that could stop them starving.
That’s why, during Pancreatic Cancer Awareness Month last November, we took our campaign to improve access to PERT to Parliament through a series of events.
We had brilliant engagement with politicians across all parties, and got pancreatic cancer firmly on the political agenda! This success wouldn’t have been possible without fantastic supporters like you who shared their experience at our events. Almost 900 of our fantastic supporters invited their MP to join us – so from all of us at Pancreatic Cancer UK and across the pancreatic cancer community: thank you.
Our virtual Westminster event
We were over the moon to welcome 21 MPs from across a range of parties to our drop-in event.
Eight amazing supporters came along to the event to share their experiences of PERT and pancreatic cancer with MPs.
It was so powerful for MPs to hear directly from people affected by pancreatic cancer including Marie, from Worksop whose mum was never offered PERT, despite her severe weight loss in her final weeks.
“I’m very grateful for the briefing today, and to Marie for sharing her mum’s devastating experience. It really brings the problem to life. We’re on it and I’ll be writing to my Cancer Alliance because we need to do better.”
Our virtual events in Northern Ireland and Wales
We were also delighted to welcome 11 MLAs in Northern Ireland and 9 MSs in Wales to two more virtual events during PCAM.
At our Northern Ireland event, Claire from Derry shared her experience of taking PERT following surgery for pancreatic cancer, which really helped the MLAs to understand why this is such a vital prescription. And at our event for the Welsh Senedd, Hannah from Powys shared the powerful story of her husband, Mark, and the relief he got from PERT in his final months.
Once again, attendees found it really moving and engaging to hear from people with personal experiences, and we had some positive conversations at both events about working together to drive up PERT prescription.
The Scottish Members’ Debate
To top it all off, we had the most amazing debate yet in Scottish Parliament for Pancreatic Cancer Awareness Month!
Clare Adamson MSP has organised and led a great debate for the past five years, but this year was something else – 11 different MSPs gave excellent speeches covering a really wide range of important points about pancreatic cancer, with many talking about our campaign and the importance of prescribing PERT.
We were delighted to hear PERT mentioned so many times, and to hear the Cancer Minister note this issue down and agree to go away and look at it. Many MSPs spoke movingly about their own constituents who had been personally affected by pancreatic cancer. This helped to give a human face to an illness that can too often be reduced to its tragic statistics. We’re very grateful to them for bringing the people behind the stats back into the spotlight.
Scroll through photos from our events below
Some of the attendees of our virtual Senedd event for MSs in Wales on 18 November
Our supporter Claire shares her experiences with MLAs at our Northern Ireland event on 16 November
Our supporter Hannah Davies shares her experiences with MSs at our virtual at Senedd event on 18 November
Our supporters and staff meet ahead of our virtual Westminster event for MPs on 30 November
Clare Adamson SNP led the Scottish Members' Debate for the 5th year
Steve Mccabe MP speaking to our supporter Charles alongside our Head of Research Chris
Stephen McPartland MP speaking with our supporter Roy alongside our Policy Manager Peter
Delyth Jewell MS asking a question at our virtual event for Senedd members
Emma Harper MSP spoke at the Scottish Members' Debate about the need for research investment
Our supporter Peter speaking with Bambos Charalambous MP alongside our Head of Services Sarah
Our staff speaking with Paul Girvan MP
Jenny Rathbone MS asking a question at Senedd event
Our supporter Claire speaking with Nickie Aiken MP alongside our Head of Scotland and Northern Ireland Dawn Crosby
Our supporter Charles speaking with Munira Wilson MP alongside our Head of Research Chris
Jim Wells MLA asking questions at Northern Ireland event
Our supporter Roy speaking with Mohammed Yasin MP alongside our Policy Manager Peter
Our supporter Marie speaking with Rosie Winterton MP alongside our Director of Policy and Campaigns Anna
Our supporter Bryony speaking with David Jones MP alongside our Senior Campaigns Manager Jo
Maree Todd the cancer minister responds to the Scottish Members' Debate
Our supporter Peter speaking with Sarah Olney MP's researcher Kieran alongside our Head of Services Sarah
Sandesh Gulhane MSP talked at the Scottish Members' Debate about the need for more patient information and support
Our supporter Claire speaking with Alison Thewliss MP alongside our Head of Scotland and Northern Ireland Dawn
What’s next for the campaign?
Through our events we gained dozens of new supporters in parliaments across the UK. Now we’re busy taking the MPs and other local politicians up on their promises, making sure that none of our momentum is lost.
We’re making great progress. And for this change to last, we need to keep the pressure up.
Thanks to the almost 30,000 of you who have put your name to our open letters, our campaign has become hard to ignore. We’re now handing in our open letters to NHS leaders across the UK and will be using our combined voice to ask decision makers to share their plans to make sure people with pancreatic cancer can get access to PERT.
Next, we’ll be building on our parliamentary events and working with local health bodies across the UK to drive up prescription rates locally.
Thank you again to all of you who have supported the campaign so far and helped us achieve so much!
What have we achieved together?
Almost 30,000 people have signed our open letters, making our voices impossible to ignore.
We secured a meeting with the National Clinical Director for Cancer at NHS England, Peter Johnson, who agreed to disseminate information about PERT within the NHS.
In Scotland the NHS has given the go-ahead for a specific plan, or ‘pathway’, to support people with pancreatic cancer from diagnosis through to treatment and care. Thanks to our campaign, PERT is going to be a key part of this pathway!
Almost 3,000 health professionals have downloaded our PERT guide to help them make sure every patient they see who could benefit from PERT gets access.
Over £65,000 has been raised so we can continue our vital work to transform the future for everyone with pancreatic cancer.
