BAPEN & PINNT Collaborate on Survey Looking at the Needs of Home Enteral Tube Fed Patients

We hope everybody was able to check out PINNT’s Home Artificial Nutrition Week earlier this month. What a huge success!

HAN Week was started by PINNT in 2013. Its aim is to raise awareness about lifesaving, life-changing home treatments that provide people without the ability to eat and drink normally, a way to receive their nutrition and hydration.

We are absolutely committed to supporting and promoting the needs of people who rely on artificial nutrition. We have worked with PINNT this year to pilot a survey on the needs of enteral patients when they transfer home. Those results are being analysed now, and we hope that it will shed light on the particular challenges faced by people in this tricky transition phase. Our thanks go to everybody who has contributed to this survey. We are determined, as PINNT is, to hear your concerns and push for positive change.

Many patients on home artificial nutrition have had a particularly hard year and we hope that HAN Week 2020 has been a bright spot. Our congratulations to PINNT for a fantastically successful and inspiring campaign.

In this article we hear from Liz Anderson, BAPEN Executive Officer, provides an update on the pilot survey.

Liz Anderson is a Lead Nurse for Nutrition in Buckinghamshire Healthcare NHS Trust. She sees patients day in and day out and shares BAPEN’s passion for ‘putting patients at the centre of good nutritional care’, so much so, that when PINNT first discussed the potential for the enteral survey she volunteered to co-lead the project.

Let’s remind ourselves of the statement from 2019: “BAPEN is committed to improving the care for those who are receiving artificial nutrition support. We will be surveying patients (and carers and parents) at home to better understand whether the care that is being delivered matches that which is needed, in order to determine what we need to do together to further enhance nutritional care: We need to know the current reality so we can build effectively on the research carried out in Bournemouth in relation to those on home enteral tube feeding. The results from the 2019 BAPEN survey will help us prioritise our 2020 activities, so we can improve standards of person-centred care for those receiving artificial nutrition support."

The project commenced later than expected. The pilot survey was compiled and run past a small group of PINNT home enteral nutrition members to ensure it covered all bases prior to it being launched. When the survey went live at the end of January and the responses came in, Liz made a memorable statement about why this survey was carried out, she said: “It is important for healthcare professionals to understand the patients’ and carers’ concerns and to manage them better.”

When the survey was closed and the results were in, the collation of the results was quarantined just like many things at this time! However, the findings will be shared when available and they will be used to shape BAPEN activities; possibly not in 2020 as originally hoped, later in the year or early 2021.

Liz said the main messages that came through loudly in the survey were, “Feeding tubes do save people’s lives. They transform people’s lives, but they change people’s lives as well.”

Liz goes on to say: “As healthcare professionals, it is our job to listen to people, to enable them to make the right choice of tube and to believe them. It may be ‘just a tube’ to other people but to them it can be a whole new scary world.

The commitment to this project is as sincere as it was when it was first launched. There is much to be done in terms of people being listened to and believed regarding their personal experiences and expertise.

I would like to thank all of you who responded, and we will hopefully have the full report out soon.

BAPEN would like to thank all of you who responded, and we will - hopefully - have the full report out soon.

BAPEN remains committed to supporting people on home artificial nutrition (HAN) and is proud to support HAN Week 2020.”

 

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