ENTERAL AND PARENTERAL FEEDING QUESTIONNAIRE

Are You: [Circle all that apply] NG Fed go to Section 1 NJ Fed go to Section 2 PEG Fed go to Section 3 PEJ Fed go to Section 4 On TPN go to Section 5 Everyone needs to complete Section 6

Section 1 NG Fed members only

Age How long did you have ME before being NG fed? Reasons for NG Feeding How long have you been NG fed? Hospital Consultant Gastroenterologist Who manages your tube on a daily basis i.e., flushing/ aspirating? Who oversees the care of the tube and your nutrition in the community When the tube needs replacing where does this take place? Is there a plan in place for the replacement e.g. elective resiting?

Section 2 NJ Fed members only

Age How long did you have ME before being NJ fed? Reasons for NJ Feeding How long have you been NJ fed? Hospital Consultant Gastroenterologist Who manages your tube on a daily basis e.g. flushing? Who oversees the care of the tube and your nutrition in the community? When the tube needs replacing where does this take place? Is there a plan in place for the replacement e.g. elective re-siting? Are you NJ fed due to gastroparesis? Have you been tested for / diagnosed with Mast Cell Activation Disorder? If "YES" to the above, circle as appropriate Section 3 PEG Fed members only Age Hospital Consultant Gastroenterologist How long did you have ME for before any form of tube feeding commenced? How long did you have ME before being PEG fed? Were you NG fed before being PEG fed? If so, why was the decision made to site a PEG? Reasons for PEG Feeding How long have you been PEG fed? Who manages your tube on a daily basis e.g. flushing/aspirating? Who oversees the care of the tube and your nutrition in the community? Section 4 PEJ Fed members only Age Hospital Consultant Gastroenterologist How long did you have ME for before any form of tube feeding commenced? How long have you been PEJ fed? What other forms of tube feeding were tried prior to PEJ feeding? Why and by whom was it decided you needed a PEJ? Who manages your tube on a daily basis e.g. flushing? Who oversees the care of the tube and your nutrition in the community? Are you PEJ fed due to gastrointestinal failure? Have you been tested for/diagnosed with Mast Cell Activation Disorder? If ‘YES’ to the above, circle as appropriate Section 5 Total Parenteral Nutrition Age Hospital Consultant Gastroenterologist How long did you have ME for before any form of tube feeding commenced? How long have you been on TPN? What other forms of tube feeding were tried prior to TPN? How long were they tried for and why were they stopped? Were you allowed to become underweight whilst different types of tube feeding were tried? Who manages your central line on a daily basis? Are you on TPN due to gastrointestinal failure? Have you been tested for / diagnosed with Mast Cell Activation Disorder? If "YES” to the above, circle as appropriate Section 6 All enteral/parenteral fed members Have you been assessed by SALT? Were you diagnosed with an unsafe swallow? Were you allowed to become underweight prior to tube feeding commencing? Was your inability to eat ever considered to be anorexia nervosa? Were you ever threatened with sectioning prior to tube feeding commencing? Do you feel your health has improved by being tube fed? Any other relevant information: Thank you for taking the time to complete the questionnaire. June 2019