Misunderstood, Mistreated & Fighting to be Heard

UK achalasia misdiagnosis report (published 30 September 2025)

About this report

Earlier this year, we launched our first-ever research project into the misdiagnosis and late diagnosis of achalasia in the UK. This research was co-produced by the achalasia community, for the achalasia community. To everyone who shared their story: thank you. Your courage made this possible.

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.

Recommendations

This is more than a report; it’s a critical call for change. We urge NHS leaders, policymakers, and government to act now so achalasia patients finally get timely diagnoses and compassionate care. We propose the following recommendations:

1. Enhancing healthcare professional education on achalasia, with a focus on GP and gastroenterology specialisations and addressing gender bias in symptom interpretation. 
2. Improving achalasia diagnostic pathways by: setting out a nationally agreed diagnostic algorithm for primary care; ensuring increased availability of esophageal manometry; and developing national guidelines on the diagnosis of achalasia. 
3. Implementing supportive communication standards and aftercare plans for people with achalasia.
4. Renewing the UK policy agenda for rare diseases ensuring the timely renewal of the UK Rare Diseases Framework.

Contact

Media/Policy: jack.eddy@achalasia-action.org
Helpline: 0300 772 7795