Inclusion and the social impact of tube feeding

Wilbo’s Blends has selected the theme ‘the social aspect of the blended diet’ for feeding tube awareness week 2023.

 Often the acute necessity for a feeding tube means it is thought about in very practical terms, a mechanism for the delivery of nutrition, rightly so. This same necessary logic extending into the formula feeds that have been developed for tube feeding. Commercial formula bottles have an ingredients list developed in a lab rather than a recipe you might browse over in a cookbook.

 There are an estimated 790,000 nasogastric feeding tubes1 being inserted every year by the NHS and many more people having a Gastrostomy or Jejunostomy. These numbers are increasing all the time as medical practices improve. Feeding tubes are frequently not an acute necessity in a hospital but part of the everyday life, for many years or even a lifetime.

 Try to think about a picnic in the park or a café with friends and you start to see why a feeding tube needs much wider consideration than that of its functional purpose. Our whole society revolves around food. We meet people for a coffee or a drink, for lunch or dinner. How many times a day is the question posed, ‘what shall we have to eat?’ When you have a feeding tube you can be excluded from those conversations and all the social experiences that revolve around food and drink.

 This issue extends and becomes even more profound when you consider the many parents and carers of ‘tubies’. When caring for somebody with complex needs there is an unavoidable necessity for life to be medicalised. Specialised equipment is often the most visible representation of this medicalisation but it goes much deeper. A parent or carer must become the ultimate specialist. A conduit for every health and social care professional from Doctor, Nurse and Pharmacist to Physio, Occupational Therapist, Dietitian and everything in between, all delivered with military like organisation 24/7. The need for tube feeding can take away that last bastion and most human activity of a shared mealtime and a degree of normality.

 But it doesn’t have to be that way, a feeding tube doesn’t have to take you away from the world of food and drink the rest of society enjoys every day.

 An example of how it can be different is Brickhouse Farm Cottages, Lancashire. Set up almost 10 years ago to provide disabled access holiday cottages that were ‘home from home’ for families, friends and carers. The catalyst for creating the cottages, like with Wilbo’s Blends, is from personal experience. Their experience created an ethos of inclusion which is central to every aspect of what they do, this extends rightly to their bistro.

 When you go to the bistro, and many locals do, it is a similar experience that you might have in any other good restaurant or bistro. But there are small details you might notice like raised tables that accommodate wheelchairs and lots of space to provide needed freedom. When you sit down and look at the menu to decide what to order, you might notice another important difference - you can ask for your meal to be blended. This is unlike anywhere else I know. This isn’t a different meal or menu, order whatever you fancy, just as everybody else does, and it will come served ready for a feeding tube.

 This is what inclusivity means when eating out. The team at Brickhouse Farm Cottages are leading the way when it comes to inclusivity for tubies when eating out. It is not without careful thought and effort, but it is not an insurmountable barrier for others to follow their lead.

 Kirstie Logan, operations manager said, ‘the biggest challenge was changing the mindset of the chefs; they have spent their whole career perfecting flavour combinations and textures and this was a total change to that’. But they have embraced it and the Bistro is better for it. Brickhouse Farm Cottages recently hosted a school prom for a local specialist school. From the first enquiry from the school, the inclusivity mantra came to life. The prom committee were invited to visit the venue and decide what they wanted for their prom and importantly what was on the menu. The menu was chosen and was available for everybody including those with feeding tubes.

 Like the team at Brickhouse Farm Cottages, at Wilbo’s Blends we care passionately about inclusion. By raising awareness, understanding and accessibility to the blended diet we hope to create a more inclusive society through the food that brings us all together. We know that improved physical health is only one of the reasons that real food is being adopted by people with feeding tubes. The example being set by the bistro team at Brickhouse Farm Cottages shows how eating out can be fully inclusive for those with a feeding tube. Most commercial kitchens have the equipment to offer blended options, we would love to see this become as widely available as wheelchair access in restaurants and we are committed to see this become a reality.