Wednesday 06 August 2008

Irish Independent

Carers of people with intellectual disabiities yesterday urged a change in the law on consent for those who require medical attention. As the law satnds, medical or surgical procedures cannot be carried out without the informed consent of a patient over 16. But there is no clear definition of 'informed consent' and the law is equally vague on what happens if the person is unable to give consent.

Inclusion Ireland, the national umbrella group for people with intellectual disabilities, yesterday described the situation as "totally unsatisfactory" and warned that the law urgently needed to be updated. The only system for decision making for adults under Irish law is 140 years old and would see a person become a ward of court, losing the right to make decisions about their person or property.

"The problem is if she develops a chronic illness, is she needs surgery or whatever, then once she is over 16 I can't sign for it and she can;t sign for it herself," Frieda Finlay said of her daughter Mandy (35) who has intellectual difficulties. "She would be able to do it if she was given the correct information and the support but that's not allowed as it's been deemed that she doesn't have the capacity to do it. So she would be in limbo. "It doesn't make sense to ahve someone made a ward of court because, with a little more support, they could make a decision themselves."

Inclusion Ireland yesterday launched a booklet for parents of families of children with intellectual disabilities who are faced with medical problems. "The lack of clarity over rights means there is wdespread confusion over what happens when family members disagree with a doctor, or each other, over what is the best form of treatment", Deirdre Carroll, CEO of Inclusion Ireland, said. "So it is often the responsibility of medical professionals to make a final decision."

The group, which represents approximately 28,000 people, is hoping that a formal system will be introduced to assess whether a person has the capacity to consent to medical treatment. It is also hoping that a law can be introduced giving a family member or carer the power to consent to medical treatment on behalf of a person with a disability.

"As far as I can see there is no opposition to this idea," Dr. Mark Hamilton, who launched the booklet, said. "It is about making the playing field level but it is also about helping doctors. The law is so archaic at the moment there is any number of grey areas." The Government is preparing a new Bill on Mental Capacity and Guardianship, which is expected to include statutory recognition of ifnormal decision making by carers and professionals.

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