Anne’s Story
After decades of poor dental treatment, Anne needed a hospital treatment plan for “rampant gum disease” – that could have been avoided if her dentists had been more knowledgeable about cleft.
“For all those years, I went religiously to the dentist every six months. I eat healthily, I don’t smoke, or any of the things that can cause oral problems. The dentists would look at the top teeth but ignore my cleft denture and gums.
“Dentists are supposed to check for gum disease, which can be more prevalent with cleft. But by the time I got to the dental hospital I had rampant gum disease.”
“Dentists are supposed to check for gum disease, which can be more prevalent with cleft. But by the time I got to the dental hospital I had rampant gum disease.”
Anne was born with a bilateral cleft lip and palate, and has worn a denture for more than 50 years.
“I had constant surgeries growing up, including lip and palate reconstruction, and rhinoplasty. As a child that screwed up my O levels and was going to affect my A levels so I walked away from further treatment. I wanted to get my life as a musician back on track, and go to college without the constant interruptions.
“All the NHS dentists I visited would just treat my teeth and ignore the cleft and denture.”
“My mouth is very different, and, by the time the surgeries had finished, I only had seven natural teeth left in my upper jaw. All the NHS dentists I visited would just treat my teeth and ignore the cleft and denture. None of them mentioned my heightened risk of gum disease.
“I was aware things were beginning to go wrong, and, fortunately, a lovely new dentist, Angela, joined my dental practise in 2018. When she looked in my mouth she said, ‘oh my goodness, you’ve got a cleft, tell me all about it’, I almost fell out of the chair, because, in 40 years, not a single dentist had said a word about my cleft.”
Angela diagnosed Anne’s gum disease, and referred her to Addenbrooke’s Hospital in Cambridge to see a restorative dentist.
Anne had extensive treatment at the hospital, including periodontal cleaning with anaesthetic and teeth removal, requiring her to take time off work.
“At that point I started reading stories on CLAPA’s website from others my age, and thought, ‘I’m not unique or unusual and why have we all suffered like this?’”
“It made me suddenly realise that, for all of those years, I hadn’t received the support and help that I needed from my dentist, and that my teeth wouldn’t have been in nearly such a bad condition if my gums had been properly looked after.
“At that point I started reading stories on CLAPA’s website from others my age, and thought, ‘I’m not unique or unusual and why have we all suffered like this?’
“Lack of good NHS dental treatment for people with cleft is now one of my main concerns.”
After her treatment at the hospital, Covid arrived and her dentist, Angela, returned to Portugal. Anne found it impossible to find another NHS dentist, and had to have her new denture made privately, at great cost.
She recently moved to North East Scotland and was “over the moon” to find an NHS dentist with spaces and prompt regular appointment slots.
“In five months, I’ve had one proper dental appointment, seen two emergency dentists, and had two hygienist appointments.
“Up here I feel supported and confident for the first time in my adult life. It’s awful that this should be such an unusual situation to be in – this should be the norm.”
“In Norwich, no NHS dentist would touch me with a barge pole after Addenbrooke’s and Covid, not a chance. I had to have private dental treatment in the end, and even that was difficult getting appointments.
“Up here I feel supported and confident for the first time in my adult life. It’s awful that this should be such an unusual situation to be in – this should be the norm.
“The whole situation with NHS dentists, especially since the dental contract was introduced in 2006, is just awful. And even more so for people with cleft.
“There’s a popular misconception that cleft is very quickly dealt with in the first few months of life, which it may be for a few, but actually for the majority of us, it isn’t.
“We need more knowledgeable dentists, and those keen to learn about what, for most of us, is a lifelong dental condition.”