Share your stories

If you would like to share your story with us, just submit your details using the guidance below and we will arrange a suitable time to interview you. Interviews are conducted over the phone and will take about 30 minutes, and stories are written in collaboration with you.

You should submit your stories to info@orofacialpain.org.uk.

Patient stories template

1. A brief history of condition (500 words maximum) e.g. length of pain problem,
2. What were your goals in the management process?
3. A list of how your condition was managed
4. What options for treatment were discussed with you?
5. Were pros and cons discussed with you?
6. Which management options were helpful?
   • How long did they help for?
   • What did ‘being helpful’ mean? E.g. reduced pain, allowed you to sleep better, return to work, understood your condition better, etc
   • Did you experience side effects and were these managed effectively?
7. Which management options were unhelpful? What happened and why did you think they were not helpful?
8. What aspect(s) of your management could you align to the pathway?
9. What aspects of your management were not supported by the pathway?
10. What is the global impression of the care your received?
11. How do you now manage your pain?
12. What helped you to move forward in managing your pain?
13. What do you find difficult in managing your pain?
14. What are the 3 key messages, taken from your pain experiences, that you would like to make

We will not publish your story or make it available to a third party without your written permission. However, you must be willing to use your real name and where possible, provide a photo. If you have a story to tell, whether you live with pain, or from the perspective of a carer or family member, we would be very pleased to hear from you.

Useful resources for patient stories and examples

You can see many moving personal pain stories on https://www.pain.com/en/evidence-of-relief/success-stories.html and http://www.yourpaincommunity.com/

Orofacial nerve injury support group UK:

https://www.facebook.com/groups/2308750609431844/?multi_permalinks=2309249199381985&notif_t=manual_published_unpublished_post

Burning mouth syndrome (BMS)  https://www.facebook.com/groups/burningmouthsyndrome/?ref=share

Burning mouth syndrome (UK) https://www.facebook.com/groups/221410511717076/?ref=share

National Migraine Centre Podcast https://www.nationalmigrainecentre.org.uk/understanding-migraine/heads-up-podcast/