Think Ammonia!

The "Think Ammonia!" campaign is designed to improve outcomes for high ammonia. This comes after we have received reports of individuals experiencing disability or even death due to high ammonia not being recognised and treated early enough.

Respondents to our hyperammonaemia survey highlighted the issues around high ammonia:

  • 92% of respondents felt that the staff they encountered didn’t have adequate awareness of the signs of hyperammonaemia.
  • 62% responded that there were challenges or delays in the process of testing ammonia levels and reaching accurate ammonia level results.
  • 71% were not given any information about high ammonia or inherited metabolic disorders before referral to a metabolic centre.
  • 65% of respondents said that there have been long-term physical effects that have occurred due to a delayed recognition of high ammonia.

What are the aims of our “Think Ammonia!” campaign?

  • To achieve an increase in ammonia testing for unwell neonates and people experiencing unexplained coma or encephalopathy.
  • To achieve a decrease in ammonia test sample rejection from laboratories.
  • To raise awareness with healthcare professionals so that they recognise the symptoms and test earlier.
  • To increase awareness around the symptoms of high ammonia to ensure people can recognise the signs.
  • To develop resources for high ammonia.
  • To ensure clearer labelling is in place around the potential risks associated with high-protein products and conditions causative of high ammonia.

What we’ve done to inform this campaign:

  • We brought together a working group of senior NHS staff.
  • We held a hyperammonaemia roundtable at our 2023 annual conference.
  • We ran a hyperammonaemia survey that received responses from 34 people with lived experience of hyperammonaemia.
  • We sent out freedom of information requests to NHS trusts to find out their processes for ammonia testing.

Our achievements so far:

  • We’ve presented at events and have reached 730 people.
  • We’ve created and are sending out posters to be displayed in healthcare settings to help people know the signs, test earlier and save lives. So far, we’ve sent out 300 posters.
  • We’ve been sharing details of the campaign on our social media and have reached 25,000 people so far.
  • We’ve created a hub for healthcare professionals to access the guidelines on hyperammonaemia.
  • We’ve been working to share our community’s stories of hyperammonaemia to help people know the signs, test earlier and save lives.

Watch this space for further updates on our “Think Ammonia!” campaign.

Interested in getting involved?
Email our Campaigns Lead, Jonathan Gibson via jonathan@metabolicsupportuk.org

Information for the public

Are you interested in learning more about high ammonia, how to spot the symptoms and what to do if you’re experiencing this condition?

Click the button below to access this information:

Guidance for HCPs

Hyperammonaemia is a time sensitive medical emergency, requiring rapid diagnosis and treatment. Visit our hub of hyperammonaemia guidance to learn more.

Click the button below to access the guidance:

The Posters

We’ve created downloadable posters for the general public and healthcare professionals. These are designed to help people know the signs, test earlier and save lives.

Click the button below to access the posters:

The Stories

We’ve been talking to our communities to share their hyperammonaemia stories and to find out what they’d like to see changed to improve outcomes for other families.

Visit the next page to explore these stories:

The Survey

In 2023, we launched our hyperammonaemia survey which helped capture insight from our communities about their experience of hyperammonamia.

Click the button below to read the results:

Social Media Pack

Awareness is essential. Help us spread the word about high ammonia and the “Think Ammonia!” campaign to ensure change happens in order to save lives.

Click the button below for our social media pack:

The Events

We’ll be working to present about our “Think Ammonia!’ campaign at events throughout 2024 to ensure people are aware of the issues so change can happen.

Visit the next page to explore the events:

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