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Otley Mum and MP launch campaign for worldwide Feeding Tube Awareness Week to be supported in the UK

February 8, 2017 2:21 PM

An Otley mum and her local MP, Greg Mulholland, have launched a campaign for worldwide Feeding Tube Awareness Week to be supported in the UK. Shona Mellon, whose daughter Isla suffers from Mitochondria Disease and uses a feeding tube and Greg, who is well known for his campaigns for children with rare diseases, are now hoping to get the backing of people, MPs and organisations up and down the country Feeding Tube Awareness Week as an annual event.

Feeding Tube Awareness Week 2017 is this week, 6th-10th February. It is organised by the Feeding Tube Awareness Foundation, in America and seeks to, "promote the positive benefits of feeding tubes as lifesaving medical interventions. The week also serves to educate the broader public about the medical reasons that children and adults are tube fed, the challenges that families face, and day-to-day life with tube feeding."

Greg, inspired by Isla's story, introduced an Early Day Motion, number 924, in to the House of Commons which welcomed Feeding Tube Awareness Week and congratulated those who work to increase public knowledge and understanding of feeding tubes. As well as the challenges for the families involved, a lack of understanding of the equipment can mean that parents of children and young people who use a feeding tube can face negative reactions from others.

The parliamentary motion highlights that feeding tubes can be lifesaving pieces of equipment and that there are over 300 conditions which are currently listed as potentially leading to a patient being fed through a feeding tube. The motion goes on to call on the Government to continue to work to increase public knowledge around the use of feeding tubes and to support not only children and young people who use the tubes but those who care for them also.

Greg also used a Health Question to highlight Feeding Tube Awareness Week. He asked the Minister to join in welcoming Feeding Tube Awareness Week and helping raise awareness of this important issue and giving support to all the thousands of families in which children or other family members are tube fed. The Minister, Nicola Blackwood MP, was happy to welcome Feeding Tube Awareness Week and greater awareness of the situation affecting those who rely on them and their families.

Commenting, Greg Mulholland MP, MP for Leeds North West said,

"I am very pleased to support Shona and to help promote Feeding Tube Awareness Week in the UK. This is a worldwide initiative and it is time is get behind it in this country.

"There is a real need to increase awareness of feeding tubes and the issues and challenges faced by the children who need to use and for their families. When Shona raised this issue with me, I realised there is a real lack of awareness of the lifesaving role of feeding tubes and the many issues and challenges families face. There are a lot of complications to having a child who uses a feeding tube and families and carers go through a lot of hard times. Simply making sure your child is properly nourished becomes a challenge and different methods work better for different children.

"It is also important to raise awareness, as sometimes a lack of understanding and awareness can lead to uncomfortableness or even stigma and people, especially people who work with children and in our schools need to have a good understanding of feeding tubes. I am pleased to have raised Feeding Tube Awareness Week 2017 in the House of Commons and pleaded to have a positive response from a Health Minister. Now I hope that many people and organisations will ask more MPs to back this and to help increase awareness of tube feeding so we as a society better support the people who rely on them and their families".

Commenting Shona Mellon, Isla's mum, said:

Isla with feeding tubeV2

Isla with her feeding tube

"Feeding Tube Awareness Week is a really important way to raise the importance of feeding tubes to those children and young people who rely on them, but also to highlight the challenges that many families face.

"As one of the many families in this position, I am really keen to see people in the UK get behind Feeding Tube Awareness Week and help raise feeding tube awareness. I'm delighted that our local MP, Greg Mulholland MP has taken this up and raised this in Parliament and we hope that many other MPs will follow suit. It does for a change make you feel as if someone is listening and I would urge other families and campaigners to ask their MP to sign Early Day Motion 924 and show their support for all who are tube fed and their families".

"From a parent's point of view, the very beginning, when a child is first using a feeding tube are very stressful. You can feel like you have failed in some way or let your child down. This isn't the case at all but it can be a natural reaction."

Liz Curtis of The Lily Foundation, the leading charity for sufferers of Mitochondrial Disease in the UK said:

"As a leading UK charity for Mitochondrial Disease, we welcome any public awareness and understanding of tube feeding amongst the British public. This will help to educate and break down barriers for children and young people who are unable to eat by mouth, or who are unable to receive enough nutrition from oral eating. We fully support this EDM."