Nutrition & Hydration Week
During Nutrition & Hydration Week (18-22 March) PINNT released the following to the media:
‘Nutrition & Hydration Week focused on food & drink, malnutrition & dehydration,
quite rightly as these are essential for survival for the majority.
However - just imagine not being able to nourish your body with normal food and drink.’
Adults and children whose digestive systems are not working or whose bodies are unable to utilise food and drink effectively rely on liquid nutrients being pumped or infused into their bodies through a tube.
Families faced with the prospect of the introduction of this life-saving and complex therapy into their lives - for their new born or child - have to readjust not only their daily routines but also their approach to nourishing their off-spring.
“As a mum, having a child who can't be fed as other children are is incredibly hard,’ says Jasmine Cheesman of Southampton, mother of Isobel who was born with intestinal failure and has been fed parenterally at home with a line into a main vein. “It was only after joining PINNT and talking to others on artificial nutrition that we plucked up courage to go out to eat, socialise and travel again, supported by our now lifelong friends formed through the charity. Talking to others also helped explain the pain that Isobel could be feeling and helped us ensure that Isobel felt positive about her line and the amazing thing it was doing for her – keeping her alive!”
Adults who through an underlying health issue or trauma find themselves having to adjust to a daily regime of up to 12 hours attached to a line and pump, or other form of tube feeding, also face major challenges to cope with on a daily basis. Most have to adjust to a reduced intake of food and drink whilst some are even confronted with ‘nil by mouth’ as directed by their medical advisers.
“Not being able to eat and nourish myself without medical assistance puts an enormous pressure on me and my family,” says Steve Brown who has been fed through a tube in his stomach for 7 years. “It does affect our ability to engage socially in many ways especially around meals - and that’s particularly hard when you don’t get the understanding and support you hope for from people you come into contact with when you are out and about.”
Individuals and families adjusting and adapting their lives to artificial nutrition therapy at home need the support not only of their medical and nursing carers but also support from other patients with experience of coping with the daily challenges of being unable to eat and drink as others do.
“Healthcare professionals - with the best will in the world - cannot truly understand what it is like living with artificial nutrition at home 24/7/365,” says Carolyn Wheatley, Chair of PINNT who has been on artificial nutrition therapy herself for 28 years. “PINNT enables families and individuals living with or new to artificial nutrition to talk to one another, share hints and tips that help overcome the emotional, practical and social challenges that really make a difference to their daily lives.”
To celebrate its 25th Anniversary, membership of PINNT is currently free of charge, although a donation is welcome to cover the costs of producing and despatching the comprehensive membership pack. Full details and information on PINNT, its activities and local groups, and how to make a donation are available on the charity’s website www.pinnt.com. Offers of help and all enquiries should be directed to firstname.lastname@example.org.