NEWCESTOWN-BASED chef, Niamh Condon, aged 43, has been in kitchens since she was 12.
In 2014, she began working as a chef in Fairfield Nursing Home in Drimoleague and faced challenges to deliver nutritious food to residents suffering with dysphagia. This is a syndrome that affects moistening of food in the mouth and chewing, leading to problems with swallowing and increased risk of choking.
It quickly became a career move that irrevocably changed her life, and in April, 2020, Niamh made the decision to leave and focus full time as a trainer helping care homes, hospitals, and hospitality industry to better meet the needs of dysphagia sufferers.
“My vision back then, same as I have now, is to help as many people as I can. I left a full-time job just as Covid hit to go work on my own. I did panic, but I knew it was the right thing to do,” she says.
There are two things that strike you immediately when talking to Niamh about her dysphagia mission. First, her extensive knowledge of the syndrome in a holistic sense – how dysphagia affects the person, not just the condition. Second is her passion – this is not a job, it’s a crusade.
In Ireland, 5% of the population suffer with dysphagia; “That’s just who we know is diagnosed.”
It’s not talked about and creates a vacuum into which fear and shame pour in.
“People get embarrassed,” she says; and then there’s the perception issue of who dysphagia affects.
“Yes, a lot of elderly people with dementia, Alzheimer’s and Parkinson’s suffer with dysphagia, but dysphagia can affect anyone at any age for a whole range of reasons.
“There is an unfortunate side of autism where people might not have a swallowing issue, but they might have a textural issue which impacts their eating.
“Dysphagia can be a side effect of cancer; not just mouth, throat, and oesophageal cancers, but all patients going through treatment – they can be too tired to eat.
“Stroke victims can lose the ability to chew and swallow; people who have had accidents or car crashes and have damaged nerves in their back and neck can impact chewing and swallowing. Anxiety can bring it on.
“Nobody thinks dysphagia is important until it affects them,” says Niamh.
“Recently, I’ve had five calls from people I know the same age as me; their parents have been sent home from hospital and are on dysphagia level four diets, asking if I can help them. And of course, I do, but it takes much longer than just one ten-minute phone call. People don’t get it until they are faced with it.”
The levels of diet that Niamh is referring to is a seven-level system created by the International Dysphasia Diet Standardisation Initiative (IDDSI) that enables chefs and cooks to prepare food and drinks for people with dysphagia. The standard applies globally and considers different cuisines and food cultures.
“Small amounts of food more often that are high protein, high fat, and high calorie means that someone is getting their whole meal entitlement in terms of essential nutrition. For cancer patients, this is particularly essential because, if they can keep their energy up, they can battle their disease that bit better,” says Niamh.
“Any calories we can get in is essential, but taste and look of food is also important.”
Since leaving Fairfield, Niamh has been dedicating her time to creating new ways to share her knowledge and help as many people as possible.
“I’m the only person in Ireland doing dysphagia training full time. Skillnet Ireland have listed me as their dysphagia trainer and I’m doing a lot of work for the HSE in various healthcare settings. Because of that, I’ve been working on visual workbooks for care staff. They’re a visual aid available at ward level that nursing and care staff can refer to.
“Earlier this year (2021), I was invited by UNESCO Chair Professor Pat Dolan of the Unesco Child and Family Research Centre NUI Galway, and Professor Mark Brennan of Penn State University, New York, to write a chapter for their new book on Empathy for Ireland.
“Their work is about promoting empathy in adolescence and what empathy means. They wanted to know my story and how it led me to doing what I am today. I was totally out of my comfort zone!”
One of Niamh’s passions is ensuring food prepared for dysphagia sufferers looks like the real thing and involves texturing and moulding food into shapes. It has many positive outcomes: allowing time-poor chefs to pre-prepare foods that can be stored in freezers ready for heating through when needed. It makes food look more enticing and engaging, and it enables food to be prepared in such a way that it holds on to maximum nutrients.
The moulds are difficult to get in Ireland, but her belief in their usefulness has resulted in a breakthrough.
“I’ve been talking about these moulds forever and now [the Australian company that makes them], have agreed to send them to Ireland and will be available soon.
“In January, I’ll be launching a Virtual Café where anybody with any kind of dysphagia issue can jump on, chat, ask questions, and get answers. I’ll have guest speakers too – dieticians, speech and language therapists, etc. It’ll be like having at home support, but online.”
Niamh is a firm believer that food for dysphagia sufferers would be food she would eat herself. To get to grips with what living with dysphagia every day is like for some people, she often sets herself challenges.
“In August, I did a challenge where I ate only pureed food for a week. I did it because a dietician colleague challenged me to only buy food that is readily available in a supermarket.
“I found Greek yogurts and chocolate mousse, but I wondered what I would do for something savoury. I ended up in the baby food aisle. I did find mashed potato and was delighted with that, and thought I could have it with gravy, but the mash had cracked black pepper in it so I couldn’t eat that either. There was nothing.
“That’s through no fault of anybody, it’s just because dysphagia is never highlighted.
“After I completed the challenge, I just wanted to bite into something. I spotted a boiled egg, shoved it in my mouth and I started choking. My mouth muscles had weakened because I was only swallowing. I never would have thought it would happen so fast.”
There are concerns with hospitality, too. Niamh believes dysphagia should be treated as a food safety issue the same way food allergens are, but wonders if restauranteurs feel catering for dysphagia poses too much of a risk – the fear factor, again. More awareness is needed, more training, more support; something that Niamh is happy to provide.
“People can contact me for a virtual call. I’d hate to see anyone struggling, I know what it’s like, and I’ve seen people lose huge amounts of weight in a short period of time because there’s so much that’s unknown, as well as the fear someone has about choking and getting into difficulty.
“Dysphagia needs so many people: speech and language therapists, dieticians, dentist, occupational therapist. But behind it all, it needs somebody that cares.”
For more information see www.diningwithdignity.ie
Kate Ryan’s new monthly column, WoW! Bites will run in WoW! on the first Monday of every month.