Danielle’s Story
When Danielle had a painful infected tooth she couldn’t find a dentist to treat her – because of her cleft.
“I was in absolute agony with an horrendous tooth infection and couldn’t get anyone to treat me. The first emergency dentist poked around then said he ‘wouldn’t touch me with a barge pole, because I’m too complex’. He also overstretched my mouth, which is quite small because of my cleft, and caused the sides to bleed.
“I was in absolute agony with an horrendous tooth infection and couldn’t get anyone to treat me.”
“At another emergency dentist appointment, that I fought tooth and nail to get – this time with someone who specialised in complex needs – I was told I was wasting NHS time. He said he saw people with head and neck cancers etc and couldn’t justify treating me on the NHS ‘just for a cleft’ and sent me packing.
“I feel those of us with cleft fall through the gaps – we’re not complex enough for specialist dentists, and too complex for regular dentists.”
Clinical psychologist Danielle, aged 29, was born with a bilateral cleft lip and palate, which makes her more susceptible to tooth decay. Scientific evidence has shown cleft can cause decay from gum disease and weakened enamel; plaque accumulation from compromised tooth alignment and less efficient swallowing; and damage from wearing palate expanders and bridges etc.
Danielle has a plate with attached dentures that sits over the gap in her cleft palate, which, she said: “freaks dentists out, and makes them even more nervous about treating me”.
She lost her original NHS dentist when they moved to private practise, and hadn’t registered with another due to anxiety around treatment.
“As a child, I had a lot of fillings and was constantly being told off by my dentist for not cleaning my teeth properly and eating the wrong things, but I was cleaning my teeth and eating a healthy diet.
“I grew up with the idea that I’d brought it on myself, and was constantly afraid of the dentist, because I was always needing more painful treatment.”
“I grew up with the idea that I’d brought it on myself, and was constantly afraid of the dentist, because I was always needing more painful treatment. I was pretty traumatised from it all. Now it’s finally understood kids (and adults) with cleft have weaker tooth enamel, and a whole host of dental difficulties, that make us more likely to have gum disease and dental decay, I feel validated. It wasn’t my fault.”
Danielle stopped going to the dentist as a young adult, for fear of being “told off for not looking after my teeth”.
“I also couldn’t afford to spend money on treatment I was bound to need. And then Covid hit and no one could go to the dentist.
“But I ended up in so much pain I couldn’t ignore it. Despite being in agony, it took seven months to get sorted because, on countless occasions, I was told I was too complex to treat.
“I think cleft scares people. I can understand, as a health professional, why someone who doesn’t know about a condition would think they’re not the right person for the job. But what they’re not understanding is there’s nowhere else for us to go.”
Danielle spoke to more than 40 dental surgeries on the phone, and waited 18 months, before finally having a regular NHS check-up appointment last year.
“I don’t think I’ve ever been so nervous and fidgety in a waiting room – it took all my strength not to bolt back out of the door.
“After looking in my mouth, he spent a number of long minutes tutting to himself. And then he said, ‘I can’t understand how you’ve let things get this bad’, and proceeded to tell me I might need most of my teeth removed.
“I was completely devastated. I couldn’t eat that weekend, I just was so scared and sad, and terrified of making anything even worse.”
Thankfully, Danielle spoke to her cleft restorative dentist who reassured her she needed treatment, but not teeth removal, and supported her to return to the surgery and insist on seeing a different dentist.
“There’s a happy ending in that I now have a dentist who more or less scooped me up off the floor. Not going to the dentist for years has taken its toll, and I’ve had seven or eight fillings in the last year, and potentially another root canal treatment to come next year.
“I fully hold my hands up, because I avoided it for so long, but there’s a lot of people without cleft that could go a lot longer without seeing the dentist and not need any fillings at all.
“There’s enough evidence now that cleft causes multiple dental problems which make our teeth more susceptible to decay, no matter how much brushing you do.”
“There’s enough evidence now that cleft causes multiple dental problems which make our teeth more susceptible to decay, no matter how much brushing you do. And that needs priority treatment and more attention from dentists, not less.
“My new dentist has been incredible. She’d never seen someone with a cleft before, but said she was really willing to learn. I had a whole appointment where she barely even looked in my mouth – she just sat me down, reassured me, and we talked.”
Danielle has now moved back to be near her family, and is two hours away from her dentist, but says she will travel to continue treatment with her.
“I would travel across the country, and happily take a day of annual leave, to see someone compassionate and willing, who I don’t end up in floods of tears after visiting.”