Brandon-Lee’s Achalasia Story
18/08/2025
Brandon-Lee’s journey with achalasia has been tough, with years of misdiagnosis and struggles. Despite the challenges, he’s stayed strong, supported by family, friends, and workmates.
Find Help & Treatment For Achalasia
There are a number of treatments that can help with achalasia. These will depend upon the results of various tests.
Together we can make a difference
Help by sharing your experiences with achalasia, taking part in research projects, raising awareness, running a fundraiser or donating money.
Misunderstood, Mistreated & Fighting to be Heard
Discover key findings and download the UK achalasia misdiagnosis report.
Uniting for a rare swallowing condition
We aim to bring people together and to help everyone improve their understanding of achalasia
Achalasia Action provides a friendly and well-informed community to support those with oesophageal motility and peristalsis problems. We collaborate with the medical community and encourage achalasia-related research projects
UK achalasia misdiagnosis report
A patient-led report on how people with achalasia are misdiagnosed and delayed
Key findings
- More than a quarter (28%) of respondents waited over three years for a diagnosis. The longest recorded wait was 17 years.
- Over half of respondents endured multiple incorrect diagnoses, such as reflux, anxiety, or eating disorders, before receiving an accurate diagnosis.
- Women are more likely than men to wait over 3 years for a diagnosis, and more often given psychological labels.
- The diagnostic journey was fragmented, involving numerous tests and professionals who often lacked awareness of achalasia, eroding trust and leaving patients feeling dismissed and isolated.
- Only 61% of respondents received the gold-standard manometry test.
- The physical and psychological consequences of misdiagnosis and late diagnosis were profound: 70% of respondents reported severe psychological distress and 74% rated the physical impact to be very severe.
- 16% paid privately to bypass NHS delays.
"Adjusting daily life around my new diet and eating schedules after diagnosis has been the hardest challenge"
Food that may cause problems. Hints and Tips that can make life more bearable.
Achalasia Action’s response to Government’s welfare reform consultation
27/06/2025
A call to action to all our supporters Achalasia Action has submitted a response to the Government’s welfare reform consultation ‘Pathways to Work: Reforming Benefits
Annual Report 2023-24
30/10/2024
Our annual report has been submitted to the Charity Commission by the trustees.
See all the latest news from Achalasia Action