Despite this widespread challenge, we do not have a good understanding of achalasia diagnosis experiences – we want to change that. Achalasia Action is launching a pioneering policy research project to address this, and we need your help.
By understanding the real experiences of people with achalasia, we can identify the critical points where change is needed and create powerful evidence to influence improvements in how achalasia is diagnosed
Every delayed diagnosis means someone enduring months or years of:
Your experiences can help change this for future patients.
We are undertaking a policy research project to gather and summarise achalasia diagnosis experiences.
Note that the project will not involve clinical or academic research.
As a service user led charity, we know how important it is to ensure that people living with achalasia are at the heart of our work. This research project will be designed and delivered as a partnership between our research advisor and people living with achalasia, so that every step of the project is informed by lived experience. You do not need to have any previous policy or research experience to join the Steering Group.
We’re recruiting 3-4 people with achalasia to join our voluntary project steering group. As a steering group member, you’ll help:
If you are interested in getting involved in our steering group, there will be a time commitment required. We will work as flexibly as possible to ensure this opportunity is accessible to you.
Time Commitment:
Total: About 20 hours over 3 months, with flexible scheduling to fit your needs
There will be additional opportunities for steering group members to co-deliver interviews and focus groups if this is something that you are interested in. This will require additional time depending on how much you are able to commit.
For Our Steering Group We’re Looking For People Who:
You do not need any previous research or policy experience to join the Steering Group.
Can’t join the steering group? You can still make a difference by participating in our research.
We’ll be conducting:
Whether your diagnosis was recent or happened years ago, quick or took time, your experience matters.
If you are interested in being involved in our steering group, please fill out this expression of interest form.
If you are interested in sharing your experience via an interview or focus group, please fill out this expression of interest form.
If you are not able to join our steering group or research interviews, don’t worry, there will be other opportunities to be involved in the research. In February, we will be publishing a survey exploring the experiences of those who have been diagnosed with achalasia. We will also look to hear from people who have cared for someone with achalasia
