We're working to help people know the signs, test earlier and save lives.
Respondents to our hyperammonaemia highlighted the issues.
- 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 raise awareness with healthcare professionals so that they recognise the symptoms and test earlier.
- To increase awareness with the public so you recognise the signs.
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 presented at a healthcare professional education event that had 333 registrants.
- We’re working on posters to be displayed in healthcare settings to help people know the signs, test earlier and save lives.
- 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.
And that’s before we’ve even got started properly… Watch this space for further updates on our “Think Ammonia!” campaign.
Interested in getting involved?
Email our Policy and Public Affairs Officer, Jonathan Gibson via firstname.lastname@example.org
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: