Whether you need more information, support or advice, there are several charities and groups out there to remind you you’re not alone and help guide you in your tube feeding journey.
What do tube feeding charities do?
Tube feeding charities are there to give advice to tube feeding families, aid contact between patients, and provide potential financial support. This could be for things like tube feeding equipment or to improve homecare services.
What do tube feeding support groups do?
Tube feeding support groups can be made up of healthcare professionals, like dietitians, and other tube feeding families. They give advice and support, online and in person. They might also organise social events so you can meet other carers and tube feeding children can socialise with their peers.
Where can I find tube feeding support groups?
Tube feeding support groups can be found online. Social media can be a great way to connect with other tube feeding families and some will organise in-person social events. We also have a list of support groups for you to check out below.
Charities
British Association for Parenteral and Enteral Nutrition (BAPEN)
BAPEN (opens in a new tab) raises awareness and understanding of malnutrition (deficiencies, excesses or imbalances in a person’s intake) and works to advance the nutritional care of patients and those at risk in the wider community.
Family Fund
Family Fund (opens in a new tab) is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people.
React
React (opens in a new tab) (Rapid Effective Assistance for Children with potentially Terminal Illness) is a dynamic charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK.
PINNT
PINNT (opens in a new tab) is a national charity providing mutual support and understanding to hundreds of adults and children and their families adapting to life on home artificial nutrition. They promote greater understanding of the therapies, provide contact between patients, and aim to improve homecare services and range of equipment.
(opens in a new tab)
SCOPE
SCOPE (opens in a new tab) is a disability equality charity in England and Wales, creating a fairer society and providing practical information and emotional support.
Support Groups
KIDS
KIDS (opens in a new tab) supports over 13,700 disabled children, young people and their families every year. They give people who are disabled from birth to 25 the opportunity to learn, play, build friendships, gain confidence and improve their wellbeing, while providing emotional and practical support to parents and siblings.
Facebook Groups:
Tube Feeding your child in the UK – support group
Tube Feeding your child in the UK (opens in a new tab) are a support group set up for parents of children in the UK who are tube fed.
Blended Diet UK
Blended Diet UK (opens in a new tab) are a private group for those with a feeding tube, who care for someone with a feeding tube or have a professional interest in people with feeding tubes – all with a special interest in blended diets. (opens in a new tab)
We hope this list of charities and groups provide some comfort and guidance for your tube feeding journey. At Talking Tube Feeding, we also work with families who tell us all about their tube feeding journey stories. Take a look, next!
