PERT in the spotlight

It’s been a flying start to 2022 for our Transform Lives: Prescribe campaign in Parliament!

Pancreatic Enzyme Replacement Therapy (PERT) is a life-changing tablet for people with pancreatic cancer. It’s unacceptable that only 1 in 2 people with pancreatic cancer are being prescribed it.

That’s why we launched our campaign last year.

And, thanks to almost 900 of our supporters who wrote to their local parliamentarians about PERT during Pancreatic Cancer Awareness Month, we’ve secured a huge amount of engagement with parliamentarians from across the UK.

We’ve already had fourteen one-to-one meetings with politicians in the last few months alone – and have even more in store!

Your impact behind the scenes

These meetings have been a great opportunity to get to know individual parliamentarians a bit better. We’ve had time to understand their personal interest in pancreatic cancer and drill down into what they’re most passionate about advocating for – be it early diagnosis, research, symptoms awareness or all of these and more.

We’ve also secured support for our work from every parliamentarian we’ve met: whether that’s by sending letters to their health board or to health ministers, tabling parliamentary questions or rallying their colleagues to stand with us to tackle the deadliest common cancer.

Stuart McMillan MSP meeting with the PCUK team

Stuart McMillan MSP meeting with our team

PERT debated in the House of Lords

And last week, it got even more exciting! The Health and Care Bill is making its way through Parliament, and is currently in the House of Lords. And on Monday 31 January, an amendment to the Bill was debated which focused entirely on pancreatic cancer and PERT!

We were thrilled to support Lord Moylan in tabling this amendment.

Lord Moylan speaking about the importance of PERT in the House of Lords

The amendment calls for PERT to be made a national priority in pancreatic cancer treatment and care through the publication of national guidance.

It also demands regular, interim reporting on the promised audit of pancreatic cancer services, announced last May.

The pancreatic cancer audit will look at the care and treatment of pancreatic cancer patients across England, and produce data on what’s happening – including on variation between patients’ experiences, and on PERT prescription.

However, the current timeline for the audit suggests that we will receive no data from the audit until at least the end of 2023, which is too long to wait. As Lord Moylan said in the debate – we need more urgency!

“We cannot afford to wait years just to begin to understand the state of pancreatic cancer treatment and care, let alone to take actions to improve outcomes. Pursuing the audit with urgency and dispatch should be a top government priority.”

Lord Moylan

We were delighted to watch Lord Moylan’s powerful speech, and the cherry on the cake was seeing it followed up by support from many others:

  • Baroness Morgan highlighted the importance of Pancreatic Enzyme Replacement Therapy urgently ‘getting through to all patients with pancreatic cancer, rather than waiting for the longer-term survival results [from the audit]’
  • Baroness Findlay talked about the need to ‘roll-out best practice widely, not only from the cancer centres but out into the cancer units and beyond those to the general NHS’ so that all pancreatic cancer patients get the best possible care
  • Lord Aberdare raised the challenges in researching this disease and the importance of breaking the ‘vicious circle’ created by the deadliness of pancreatic cancer and how this makes research more difficult and less attractive to new researchers
  • Lord Vaizey shared how crucial it is that we develop a simple test for early diagnosis of pancreatic cancer so that people have the best possible chance of survival, asking ‘when will a test for pancreatic cancer be universally available to NHS patients?’
  • Baroness Merron shone a light on the importance of symptoms awareness for pancreatic cancer, as it has ‘such an aggressive nature and yet the symptoms are so silent and often misunderstood that it presents a particular challenge’

You can watch the whole debate back here, starting from 21:33:04 – and it’s worth a watch!

What’s next?

We’ll now be working hard to follow up with Lord Kamall, the Lords’ health minister, to ensure he makes good on his promise to continue the conversation on how we can get essential data, prioritise PERT, and start driving up survival as soon as possible.

And we’ll be continuing to meet with parliamentarians from across the UK over the following months to ride this wave and make sure that our parliamentary work translates into real policy change.

Until then – thanks to all of our supporters, and the parliamentarians who we’ve worked with, over the last few months, for everything you’ve done. Let’s make 2022 a huge year for tackling pancreatic cancer! Remember to sign up to our Campaigns Community for all the latest news.

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.