Sam completed a degree in Photography at the Open University at Craven College in 2016. The degree was a Bachelor of Arts where Sam’s modules explored different types of cameras, camera angles, lighting and how to use Photoshop. Following his course, Sam has taken a liking to street photography and particularly enjoys photographing local areas around Skipton, such as nature scenes or architecture. He keeps copies of his photography on his computer in a portfolio and soon, Sam would like to set up an Instagram page so he can easily share his photographs with others. Sam also enjoys going for walks in the Skipton area but on days where he hasn’t slept so well, it’s likely he will have a relaxing day at home.
Sam is 38 and lives in Skipton, North Yorkshire, he is supported by a small team of personal assistants. During this interview, Heather, Sam’s Nutricia Homeward Nurse and Tristan, Sam’s PA, were present to support Sam with his responses and discuss his journey with tube feeding.
What did you get your degree in?
Do you still take photos?
“I will start again”. Sam has a good camera, so in the summer when it is warmer, he is hoping to start a mini street photography project. Currently, the cold and wet weather makes it hard for Sam to get out and enjoy spending time taking his photographs.
Sam is non-verbal and uses a communication device called the Liberator Accent, which allows him to type responses on a screen and even change the sound of his voice. Sam was one of the first to get his communication device and this type of technology has been a great help for him. Sam also uses technology linked to his phone to control things such as the lights at home and play the TV. He has coloured bulbs that he can change by typing a message onto the touchscreen pad of the Liberator Accent, before playing the message out-loud through the ‘talker feature’ of the Liberator Accent.
How else has the device helped you?
“I can attend Communication Matters meetings, the most recent one was in September”. The Communication Matters meetings are held every year in Leeds and showcase new technology, important as 4-5 similar computer devices have recently been released.
As Sam is a big technology fan, he also enjoys spending up to an hour and a half on TikTok each evening. Sam has quite an impressive following on TikTok sharing his beer review videos and comedy content with 4,460 followers. He often enjoys heading to his favourite pub ‘The Craven Arms’ with Jo, one of his PAs, for a pint of either ‘Dark Horse Craven’ or ‘Leffe’ beer. He also enjoys using this time to discover more beers that he can taste and review on his TikTok account.
What is your favourite beer?
“Dark Horse Craven or Leffe”
What kind of videos do you make?
“Funny ones and beer review videos”. The account is a good way to make friends from all over the world and keep in contact with people. Sam has a moderator to help him manage his content and messages, but his friends helped him to create his username @legendarysamhotwheels. Many of Sam’s friends actually live in the USA, so it would be a dream trip for him to visit one day.
How do you feel about tube feeding?
“I was very unsure when I first started tube feeding. I had a PEG with a tube attached to it and I pulled it out by accident” which meant Sam had to go into hospital as the stoma site can close very quickly. Shortly after this, he caught flu and whilst in hospital the decision was made to fit him with a low-profile gastrostomy button to make life easier and offer a better quality of life. “Now I don’t worry that I’ll accidentally pull it out”. The button is a much more suitable option for Sam, it can easily be changed as the size of the tube can just be updated which is useful if Sam’s weight fluctuates. Sam’s mum added that having the button really changed Sam’s life, as it gives him much more independence and undoubtedly saved his life by allowing him to easily take medicine and extra calories.
What would you say to someone who has just been told they need tube feeding?
“I would say go for it, it is the best and has made my life better. I am comfortable and happy”
As Sam is bolus fed, it means he doesn’t have too many restrictions when leaving his house. Quite often Sam enjoys going out for lunch or popping to Tesco to get something he can have at home for lunch. Sam enjoys getting out of the house and particularly likes chatting to the staff at his local supermarket.
Whilst bolus feeding provides more flexibility, it does mean that Sam still has to do some things differently, particularly as his routine has changed over the years. “I used to drink all of my medication. But now all my medication goes down the feeding tube which is much easier”. Sam does occasionally suffer from ulcers which make eating and drinking difficult. He usually enjoys a coffee and a smoothie in the morning after he’s had his medication but if an ulcer prevents this, the feeding tube can be used to maintain his calorie intake. It also helps if Sam is unwell and begins to lose weight, using the tube keeps him well fed and out of hospital.
Heather, Sam’s Nutricia Homeward Nurse, normally sees Sam every 12 weeks to change his feeding tube. She may need to visit at other times to help train new personal assistants he may have or if any issues or problems arise. The local Nutricia Homeward service agreement means Heather conducts reviews every 6 months.
How do you feel about the Nutricia Homeward Nurses?
“Heather is helpful and passes all her knowledge on to me. She is professional”. As a Nutricia Homeward Nurse, Heather is often the main point of contact for many tube feeding patients. Patients can feel very alone in the first few months after having a feeding tube inserted, and Heather hopes that regular contact and support can alleviate some of their fears and answer any questions they may have.
What do you think of the Nutricia Homeward service?
“I am comfortable and happy with the Homeward service” as the support from Nutricia Homeward is important to keep everything running smoothly day to day. Tristan shared, it’s great knowing that support is there if needed, fortunately, he hasn’t had to ring the out-of-hours service, but both he and Sam feel reassured knowing if help is required there is always the option to call. They have however used the Nutricia Homeward App, it was particularly useful during COVID when Sam developed a cough, as it meant they could have a video call consultation. Heather actively encourages all of her patients to download the Nutricia Homeward App as it’s a quick and easy way to offer advice and help when needed.