Sharing the results from our PERT shortages survey

About PERT and the supply issues

Pancreatic enzyme replacement therapy (PERT) helps people with conditions including pancreatic exocrine insufficiency (PEI), acute and chronic pancreatitis, cystic fibrosis and pancreatic cancers to absorb nutrients from food, manage and control symptoms, and maintain their quality of life.

Due to ongoing supply issues and shortages of PERT, caused by disruption to the manufacturing process for the main supplier of PERT, many people have experienced problems accessing their usual supply of medication, and some have been left without medication at all.

We know that the shortages are causing significant concern, worry and stress for many people who have been affected by the supply issues, and that it can have a devastating impact on people’s quality of life.

Earlier this year, we released a public survey to better understand how the shortages are impacting people who rely on PERT across the country. The survey results are helping to inform our next steps.

See a summary of the survey results here or click here to download as a PDF.

PERT infographic style survey results (P1) PERT infographic style survey results (P2)

 

What else have we been doing to help?

We have been working alongside fellow charities, specialist groups, and healthcare professionals including:

• British Society of Gastroenterology (BSG)
• Pancreatic Society of Great Britain and Ireland
• Pancreatic Cancer UK
• CF Medical Association
• Pancreatic Cancer Action
• Neuroendocrine Cancer UK
• The British Dietetic Association

Sharing information for patients and professionals

Together, we are doing all we can to understand the issue and provide up to date information and advice to patients and professionals.

You can find the latest information on our website here.

Position statements for patients and professionals can be found on the Pancreatic Society of Great Britain and Ireland (PSGBI) website.

In September, we teamed up with Pancreatic Cancer Action, Cystic Fibrosis Trust and Neuroendocrine Cancer UK to deliver a free webinar on the PERT shortage guidance for GPs and pharmacists. At the event, we discussed what to do if a patient is running low or cannot get PERT. There was also an opportunity for healthcare professionals to ask questions to a panel of specialists.

On the webinar, Mary Phillips, Senior Specialist HPB Dietitian at Royal Surrey County Hospital NHS Foundation Trust, shared a presentation. It’s available here: Pancreatic enzyme replacement therapy national shortage presentation slides.

If you’re a healthcare professional and would like to watch the webinar back, follow this link to the Pancreatic Cancer UK website.

Campaigning for action

In July, we collectively wrote to the Secretary of State to request a meeting to discuss the medicines shortage, and to urge the UK government to prioritise the PERT shortage issue.

Developed by Pancreatic Cancer UK, and in consultation with Guts UK, fellow charities, patients, healthcare professionals and medicine suppliers, we have agreed a five-point plan that calls on the UK government, the NHS and medicine regulators to address the PERT shortages. The plan sets out that:

1. The UK government must urgently deliver a national action plan to address PERT shortages.
2. The UK government must meet demand for PERT now, including through a national effort to import PERT into the UK.
3. The UK government must get on top of supply and demand issues.
4. NHS organisations across the UK must provide clear information to patients and health professionals.
5. The UK government and the Medicines and Healthcare products Regulatory Agency (MHRA) must find a long-term solution to resolve PERT production issues.

What can you do?

Alongside our fellow charity partners we’ve created a letter template to MPs, which you can personalise to share your own experiences. You can write to your local MP about the shortages and ask for their support. You can download the letter template here and find out who your local MP is here.

It’s important that politicians are aware of the disruption to medicine supply and the impact this is having on their constituents’ daily lives.

Do you need support?

Whilst we can’t provide individual medical advice, we can provide information about the shortages and guidance on what to do if you’re affected over the phone or by email. You can reach us on 020 7486 0341 or at [email protected].

 

We’ll continue to work alongside our partners to prioritise this issue and advocate for those in our community who are affected.