Share your experience of home enteral feeding and homecare services

LaurieB
LaurieB Community Member Posts: 2 Listener
edited July 22 in People power

Project background 

The Patients Association are working with the medical device and healthcare company Abbott to better understand the experiences of adult patients who receive - or who have previously received - home enteral feeding (HEF) and have used homecare services.  

Home enteral feeding (HEF) is a way of providing nutrition directly into the stomach or small intestine through a feeding tube for people who cannot eat or drink enough by mouth. It is used at home to help individuals maintain adequate nutrition, either short-term (e.g. during recovery) or long-term (e.g. for ongoing medical conditions), with support from healthcare professionals and homecare services.  

Homecare services involve multidisciplinary teams involving dietitians, community nurses, clinical staff, and logistics providers. These services ensure patients receive the necessary medical nutrition products, feeding equipment, nursing care, training, and ongoing support in the community. 

We want to hear from you 

Through this project, we want to hear directly from patients and their carers about what's working well, what could be improved, and what matters most to them. 

As part of this, we’ll be running two virtual focus groups where participants can share their experiences and ideas. One group will include people with long-term or chronic conditions such as cancer, neurological conditions, gastrointestinal conditions, or learning disabilities or developmental conditions. The other will include those who have needed feeding support following a non-chronic condition, such as an unplanned surgery, acute fracture surgery, or falls or frailty related traumas. These conversations will help us identify practical ways to improve services and make them more patient-centred. 

We’re looking for 20 participants from a range of backgrounds and conditions with experience of homecare services, including a mix of current and former users. We are particularly keen to hear from cancer patients, trauma patients and those who may have experience of home-enteral feeding with oral nutritional supplements (ONS) as a top-up.  

We’d also like to include people affected by health inequalities, those from marginalised communities, and individuals with diverse healthcare experiences to ensure a wide range of perspectives are included. If selected, you’ll be invited to take part in one virtual focus group lasting around 2.5 - 3 hours. As a thank you for your time, you’ll receive an £80 voucher. 

Interested patients and carers can fill in this form to express their interest:

Expression of interest - Understanding home-enterally fed patients’ experience of homecare services Survey

Comments

  • luvpink
    luvpink Community Member Posts: 5,234 Championing

    @LaurieB

    Hi have you cleared this with

    @Community_Scope

  • Holly_Scope
    Holly_Scope Posts: 6,448 Online Community Team

    Thanks @luvpink.

  • Holly_Scope
    Holly_Scope Posts: 6,448 Online Community Team

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  • SheffieldMan1976
    SheffieldMan1976 Posts: 3,212 Connected

    Most Home Care providers are only as good as the level of staff they have, and supportive managers who don't just throw staff in at the deep end and expect them to sink or swim.

    This coming from someone who's been in the care sector since about February 2001.