Belfast Telegraph

My daughter will starve to death without vital dental treatment: Belfast father's plea to health service for young woman with genetic disorder

By Claire Williamson

The father of a Belfast woman with a rare genetic disorder has said he fears she will starve to death as she suffers in agony after being told she could face a six month wait for vital dental treatment.

Jessica Madden (22) from north Belfast has learning difficulties and epilepsy.

She is in excruciating pain due to a toothache - an ailment that for most people would be treated quite simply.

But Jessica, who weighs around six stone, needs to go under general anaesthetic as she suffers from a rare condition called 8p22 duplication which affects around five people in the world.

The condition causes multiple problems in that Jessica can't communicate, has low muscle tone, weighs between 5 and 6 stone and takes seizues.

However about six weeks ago she started grabbing her mouth to indicate her pain.

She cries in agony every day and is awake until the early hours of the morning.

But her parents Pastor Brian Madden and wife Martine Madden say it could be a six-month wait for treatment.

Dad Brian recorded his daughter's anguish in a bid to highlight the suffering she is going through.

He said: "Jessica won't let you look in her mouth, she has to have an anaesthetist on standby and she has to be knocked out in order for them just to look without doing any work, and they keep telling us there is a measure of risk through every anaesthetic that people get.

"So they don't do it and seem to hold off but that's what she needs.

"She needs to go in now under anaesthetic to have the work done."

He added: "We knew there was something wrong. We went through the whole process of getting someone to see her and we've now hit a brick wall, because the Royal who usually do see her have told us she may have to wait up to to six months before being seen.

"She cries in agony every night she gets up out of bed. We managed to get a photograph of the hole and we showed it to the dentist and he agreed that she needs to be seen."

However, Brian says waiting up to 6 months is just not an option.

"We just can't wait. Jessica isn't eating and is very, very thin as it is, she would die of starvation. She is just not eating at all because obviously it's too sore."

Brian said that he feels helpless looking at his daughter in so much pain.

He said: "All we can do is give her pain relief. But when you are a father watching your child in pain and you can't do something to help her, it's the most terrible feeling."

The family hope that by highlighting their plight they can make a change for other young people in Jessica's position.

He added: "We haven't heard a thing. We hope the social networking and media pressure will cause someone to act and do something.

"It's not just now, but it's long term because we are aware Jessica is not the only young adult with learning difficulties facing this dilema.

"Politicians can argue all day long, but that won't fix the pain my daughter is going through.

"If it was one of their children they would act a lot quicker."

The Belfast Trust in a statement said it was sorry that the service was "falling short of expectations".

"This is a very specialised service which requires an assessment including an anaesthetic assessment, to determine the best course of treatment for each patient. For an urgent referral we try to have the patient assessed as soon as possible, and currently the waiting time is 6-8 weeks.

"The waiting time for treatment is dependent on the outcome of the assessment appointment. Should a day procedure be an option, the waiting time is between 6 and 14 weeks. However, should an inpatient stay be required the waiting time is around 30 weeks.

"We deeply regret that a patient has to wait for access to any of our services and continue to do all at we can to support the family within our existing capacity."

Belfast Telegraph Digital


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