Your experiences can help shape care guidelines for all mitochondrial patients
Lily have been invited to take part in an international mitochondrial workshop next week, to help improve care guidelines for those suffering from mitochondrial disease.
As part of this workshop, we will be advising clinicians on the issues our mitochondrial families have experienced when being admitted to their local hospitals as an emergency with severe seizures.
We would really appreciate hearing your good or bad experiences, as feeding back this information gives us a unique opportunity to shape the new care guidelines which will hopefully lead, over time, to a direct improvement in mitochondrial patient care.
You may wish to consider grouping your responses as follow:
- Awareness and recognition of acute neurological crisis on emergency admission
- Access to specialist care, communication between local and specialist services
- Treatments
- Emotional supports
- Rehabilitation/ Follow up post hospital admission
You do not need to make comments on each section if it is not relevant, and any experiences you share will be treated confidentially within the meeting with all identifying data removed so please feel free to be honest.
Please send all replies to [email protected] by Tuesday 27th February 2018.
Thank you for your support. Your involvement will help shape the emergency care that all UK mitochondrial patients will receive in the future.
