Going to the dentist is something most of us barely tolerate. So what’s it like for the disabled people who struggle to access surgeries or cope with treatment, and where can they go for oral health care?

“I frequently brush my forehead or slap myself with the toothbrush, which can be very painful,” says Jessica Tomm, who lives with a constant stream of physical and verbal tics due to Tourette’s syndrome. Her story is just one example of how dental care can be more difficult for disabled people.

Certain medications can cause tooth decay, as can regular vomiting. And people with Down’s syndrome have teeth with cone-shaped roots, making them more likely to fall out.

There are three oral health care options for disabled people in the UK – the local dentist, community dental care services (usually attached to health centres), and special care dentists based in hospitals.

Primary Care Trusts, PCTs, do not hold a list of accessible dentists, so locating one can be a challenge.

The most straight forward way we’ve found to do this is via the NHS Choices website. Here, dentists are listed by area. Under facilities, each practice can fill in disability access details about their surgery, including hearing loops, Braille translation services, disabled parking and wheelchair accessibility.

Some have chosen to do this, while others haven’t. This means that the onus is on disabled people to check each surgery individually, before they can tell which ones are accessible.

Ellie is a 10-year-old with Fragile X syndrome, a condition her mother Alexa describes as presenting “a bit like autism”. For her, the barriers are emotional, rather than physical.

The current plan is for Ellie to be seen at her local dental surgery. But she doesn’t like surprises, so Alexa has been helping her prepare for the day when she’ll need dental work done.

“It started with her just coming in with me to my appointment,” says Alexa. “Then we built up slowly, using large bribes, to her sitting in the dentist’s chair. Then, after more bribes, to letting him look in her mouth.

“Ellie won’t let him do anything else yet, but we might get there.”

The British Society for Disability and Oral Health, BSDH, works to raise awareness of the barriers to dental care experienced by disabled people. Chairman Dr Roger Davies says that in cases such as Ellie’s, “time and money are never wasted building the relationship between dentist and patient”.

If the local surgery proves too much for Ellie, her dentist may refer her to a little-known government-funded facility called the community dental service, usually based in health centres.

“Dentistry there is exactly the same but it is about access to it,” says Dr Davies. “We now have wheelchair recliners so that people can be treated in their chairs.”

Crucially, community care dentists are not under pressure to make money. So appointments can be longer and more frequent, there is often more staff available and they are used to working with disabled people.

Dr Davies is anxious that not enough people know about community dental services.

“Most don’t advertise,” he complains. “You can’t go on to the internet and find the closest community dental surgery to you, or even discover what services are available there.”

GPs and dentists can refer a patient to their local service. Otherwise, PCTs will hold a list and can advise on the nearest available services.

If a disabled person needs closer medical monitoring during dental treatments, or a higher level of sedation than can be given in a regular or community dental surgery, then they are referred to a hospital-based special care dentist.

Dr Roger Davies’ day job is as a special care dentist at a heart hospital. For him, the biggest challenge is “Patients who don’t understand what you are attempting to do and won’t put up with it – 200,000 people in the UK fit in to this category.” His worst fear is starting a procedure and the patient becoming too frightened to continue.

Dr Davies works to build their confidence and to help them understand what’s going to happen. Then a decision is made on how much “help” they’ll need to stay relaxed during the procedure.

By help, he means sedation. There are four types – gas, oral sedation, intravenous and general anaesthetic, which he sees as a last resort. If the patient can’t consent to sedation themselves, then a meeting is called with those who look after their best interests.

Disabled people can need dental work done under general anaesthetic for all sorts of medical and physical reasons. Lisa Egan has osteogenesis imperfecta (brittle bone disease), and recently needed a wisdom tooth removed.

“They took one look at my tooth and refused to touch it in case they broke my jaw,” she says. “In the end, the only person willing to pull it out was a guy who rebuilds broken faces for a living. If he did break my face, he could bolt it back together there and then.”

Lisa waited months for her surgery, something which doesn’t surprise Dr Davies. He is concerned that disabled people needing work done under general anaesthetic are not being treated fairly by some PCTs.

“Trusts have to guarantee treatment within a certain period for 95% of patients. So people with disabilities are ignored.”

He believes that disabled people end up in the forgotten 5% because they are seen as “higher risk”, their treatments are “more complex” and the work often takes longer to do.

On the way down to theatre, Lisa says a junior member of staff told her there was a 50% chance they’d break her jaw while pulling her wisdom tooth. But their concerns were unfounded.

“Tooth came out fine. Jaw unharmed. All that palaver of getting referred all over the place and the added wait of several months just because I have osteogenesis imperfecta was for nothing.”

By Emma Tracey for BBC Ouch