14 year old Amelia was staying in a Child & Adolescent Mental Health Services (CAMHS) Eating Disorder Clinic. Amelia was there voluntarily. She was not eating any solid food at all at the time and was having three feeds a day via a nasogastric (NG) tube. A NG tube is a thin, soft tube that goes in through the nose, down the throat, and into the stomach.

Amelia asked to speak to Philippa, a POhWER Advocate, during an advocacy drop in she was holding at the hospital. Amelia told Philippa that she really wanted the NG tube left in between feeds. The inserting and removing of the tube was causing her distress, making her feel sick and affecting her wellbeing. She said she already spent the whole day recovering from one feed and stressing about the next, and this was made so much worse by the constant inserting and removing of the tube.

Philippa asked Amelia what she had done so far to ask for the tube to be left in. Amelia said that she had asked her doctors and her Multidisciplinary Team, but they were refusing to leave it in as they felt this was detrimental to her recovery.

Philippa spoke to the nurse on duty whilst at the hospital and was told that this was a decision that must be made by the Multidisciplinary Team.

Philippa sat with Amelia and went through all the reasons why she felt that it would be beneficial to her to have the NG tube left in, and wrote them all down.

Philippa then wrote to the Consultant as well as the Ward Manager and Head of Clinical Services. Philippa set out all the reasons Amelia had given as to why she felt the NG tube should be left in. The advocate received a reply from the ward manager to say that this was being discussed and that she had passed the e-mail on to the dietician too. Philippa also received a reply from the consultant setting out his reasons for taking the tube out each time. He talked about the benefit to Amelia, and the advocate requested clarification of these benefits so she could discuss these with Amelia.

The next time Philippa saw Amelia, the NG tube was still not being left in, but she said that she had a Care Programme Approach meeting coming up, and her Community Team would also be there. Philippa reminded Amelia that she had all the reasons she wanted the tube to stay in written down and that this could be used at her Care Programme Approach meeting as a prompt to help her remember what she wanted to say.

The next time Philippa saw Amelia she had the NG tube in. Amelia was extremely happy about this. Amelia said that she had felt empowered to argue her own case at her Care Programme Approach meeting, and with the support of her Community Team and the statement of her reasons that she had prepared with Philippa had successfully made a case to have her NG tube left in.

Amelia thanked Philippa and told her that the Consultant and team at the hospital had also talked about how she and Philippa had discussed the issue, and Philippa had argued on Amelia’s behalf to have the tube left in. Amelia felt that the team had listened to Philippa and that because of Philippa’s support she had built up the confidence to speak up for herself at the Care Programme Approach meeting.