The death of a disabled woman who had all her teeth removed has led to questions being raised about the dental treatment of vulnerable patients.
Rachel Johnston died two weeks after all her teeth were taken out at an NHS Trust criticised for its drastic full extractions from other patients.
The story prompted many people from around the UK to contact the BBC to share their own experiences of hospital dental surgery on people with learning disabilities, with some also telling of loved ones having all their teeth removed at once because of severe decay.
‘They took 17 of my daughter’s teeth without telling me’
Elizabeth Palmer’s daughter Julie Lake, who has severe autism, was seen by a hospital dentist for a check-up, but ended up having 17 teeth out under general anaesthetic.
While her carers were within the hospital building, they and her family did not learn the extent of the treatment until the work had been completed.
“There was just no discussion whatsoever. For her to wake up and lose so many teeth… she kept looking in the mirror at herself afterwards,” said her mother.
“For someone who doesn’t have a real understanding of the world, it must have been an awful shock.”
The operation took place about 12 years ago when Miss Lake, who lives in residential accommodation, was in her late 30s. Her mother thinks her teeth deteriorated because of a lack of daily general care but did not believe they were in such a bad state.
Mrs Palmer was so unhappy with the treatment she hired a solicitor and ended up settling out of court with Surrey and Sussex Healthcare NHS Trust.
“Julie couldn’t have dentures – she wouldn’t cope with them – so she just lost her teeth. There should be earlier intervention.
“Dentists should not be able to extract that many teeth [at one time].”
Des Holden, medical director at Surrey and Sussex Healthcare NHS Trust said it had learnt from previous practice about how to deal with vulnerable patients.
‘Mum never recovered from having all her teeth removed’
Wendy Lees was an intelligent, professional textile artist who took pride in her appearance. In her early 70s she paid for a private dentist to look after her teeth.
But a decade later, after developing Alzheimer’s and having to be cared for in a nursing home, her teeth became so decayed she had to have every single one extracted.
She died weeks after the procedure, on 13 September 2007, aged 82.
Ultimately the cause was connected to Alzheimer’s but her daughter Charlotte said the deterioration of her teeth and subsequent operation made her final months “horrific”.
“There is no doubt whatsoever in my mind that the operation to remove her teeth was instrumental in bringing forwards her death,” said Mrs Lees.
Wendy Lees, of East Molesey, Surrey, had to be looked after in care homes from March 2004 when her husband, Peter, fell ill from the strain of being her full-time carer.
As she had paid for extensive private dental treatment, “her teeth and gums were in pretty immaculate condition when she first went into the homes,” said her daughter.
But a failure to clean her teeth regularly meant they quickly fell into disrepair.
“She just didn’t get her teeth cleaned properly,” said Mrs Lees. “She was not easy to deal with, she could be quite aggressive, so she might have bitten the toothbrush.
“But when she stayed with us we cleaned her teeth, so it was possible to do.”
When a dentist said every tooth needed to be removed, Mrs Lees said she was told several people in the home had also been through the procedure.
“It was said as if to reassure me but I was horrified,” she said.
Mrs Lees has a disabled daughter, aged 26, and says the situation with her mother has made her very anxious about her daughter’s teeth.
“I see a lot of disabled people and it’s really noticeable that a lot of them have problems with their teeth.”
‘I feel like I’m constantly battling to save my son’s teeth’
Robert Moss, 30, finds dental treatment and tooth brushing extremely difficult because of his epilepsy, tuberous sclerosis and severe developmental delay.
His mother Rose Salvin said he now faced losing all of his teeth because of a reluctance by dentists to treat him under general anaesthetic.
Robert has had no intensive dental treatment since having a wisdom tooth removed five years ago.
“I’ve had to fight for him constantly since the day he was born,” said Mrs Salvin, from Stockport.
“When he was in his 20s, the special needs dentist in Wigan said it was worth [putting him under general anaesthetic] once a year to treat his teeth.
“But since then he’s seen another dentist who said his teeth had deteriorated so much he may need to have them all removed.”
Five years ago he had a wisdom tooth removed and several fillings carried out, which his mother said made her cry because “I felt like I hadn’t advocated enough for him”.
She says he has not had any dental work since, although his mouth has been checked over.
General anaesthetics carry risks when being carried out on all patients but the risk is greater for those with a pre-existing health condition.
“I get to see my dentist every six months and get a scale and polish. So why do I have to fight for my son to have basic treatment?” asked Mrs Salvin.
“I constantly feel like he is treated like a second-class citizen.”
‘Services for the vulnerable should not be won by lowest bids’
Malcolm Hamilton, a dentist with the Public Dental Service in Scotland, said he was “saddened” at reading Rachel Johnston’s story and said prevention of dental disease “should still be much higher on everyone’s agenda”.
“All dentists would love to see a greater emphasis on prevention, but especially for those who are most vulnerable,” he said.
“We often have large and elaborate schemes to try to achieve this. But there is very little guidance for those who are not children nor in care homes for the elderly.”
Mr Hamilton said dental services were all suffering from cuts to health care.
“It is more expensive to provide dental care for vulnerable patients,” he added.
“The treatment takes longer, staff require more training, and specialised equipment can be necessary, such as hoists and wheelchair tippers.”
In 2015, NHS England issued guidelines on commissioning special care dental services.
“My argument would be that this sort of service should be a core NHS provision, as it is in Scotland, not to be won by the lowest possible bidder,” said Mr Hamilton.