One of my patients, Helen (not her real name), had an established balloon gastrostomy tube in place when she noticed the tube had become displaced while at home. It was the weekend, so no clinical nutrition nurse specialists (CNNSs) were on duty to call. She therefore attended the emergency department (ED) of her local hospital. On arrival, the staff were unsure of what to do with the tube and had no equipment to try to replace it. They called in a consultant from home who reinserted the existing tube and attempted to inflate the balloon, but it was clear that the balloon had perished. As they had no alternative tube, they suggested to Helen that she should be admitted to hospital. Helen refused because she was able to maintain her nutritional intake orally to an extent. So ED staff taped her tube down and she went home.
On Monday morning, Helen called the CNNS, who attended at home. She required a tube change and a week of antibiotics.
Unfortunately Helen's experience was not isolated, with many others reporting difficulties when accessing the healthcare setting with tube problems. Patients were reporting poor patient experiences and were having poor outcomes. These included extended hospital stays, repeated surgical procedures, incorrect procedures carried out and unnecessary admissions. Staff often had no equipment available to treat the problem or were not confident to undertake the skills needed. This led me to consider how the patient experience for someone with a gastrostomy tube could be improved.
To address these problems, the following changes were introduced:
- A personalised action plan was created so that the patient/family member/carer would feel able to undertake urgent actions that could minimise the need for hospital admission and provide them with information to follow to contact the correct health professionals at the right time
- A feeding tube passport was created, which would hold all the information regarding the individual's feeding tube, feeding regimen, previous tube changes/difficulties and supporting details. This would help inform receiving health professionals and help them support the patient
- A ‘kit bag’ was introduced that would include equipment needed to care for that patient's enteral feeding tube. This would help the patient/family/carer or health professional to resolve problems, maintain the stoma tract and change the tube if needed. The kit bag would include a letter for ED staff to prioritise triage and a supporting personalised guide for health professionals to follow.
For this to be implemented safely and effectively, a 111 pathway was designed so that, when patients contacted 111, they would be directed appropriately to the correct setting for support. Health professionals have been supported with additional training, so they are able to safely manage a tube in the absence of the CNNS, or on presentation to the acute setting, either in an emergency or attending for another reason.
Finally, patients, family and carers have been supported with understanding how to manage a tube displacement or problem and how to use their kit bag and passport effectively.
Empowering health professionals through education, resources and information has helped them to provide a more efficient service to this group of patients. Even if they are unsure how to perform the necessary skills, they have the information to hand about who they need to contact and how.
Empowering patients has been a major part of this project. For patients with enteral feeding tubes, encouraging and promoting self-care and ownership of their tubes has helped them to live with greater independence and with the confidence that they can act and access support when needed. Because of the practical difficulties often encountered in having a feeding tube, and the psychological impact, many patients often report that tube displacement is something they worry about and feel they have little influence in managing. By providing the kit bag with equipment and a personalised action plan, they can gain some control of an adverse event and hopefully take actions to save their stoma and get the help they need quickly and directly.
This project has created a smoother transition from primary to acute care settings. The kit bag and passport will enable receiving clinicians (such as paramedics and ED staff) to have immediate equipment and information about the individual patient's specific tube and feed regimen, reducing delays in providing nutrition or replacing the tube if needed.
I was pleased to receive a Bronze Award in the Nutrition Nurse of the Year category of the BJN Awards 2023 for this work.