Issue link: https://maltatoday.uberflip.com/i/975483
12 maltatoday SUNDAY 29 APRIL 2018 News MASSIMO COSTA MUCH is said about the efforts to provide an efficient and international standard health service in Malta. But the peo- ple best placed to judge the level of care provided are the patients themselves. And yet it was only recently, in May 2017, that Irene Schembri, 66, along with three other volunteers, founded the National Patients' Organisation, a group aimed at encourag- ing patients to make their voice heard and increase aware- ness of their rights. Schembri described how her personal experience in deal- ing with the serious health issues of two close family mem- bers, her sister and her son, was the force that drove her to actively assist Malta's patients. Around 45 years ago, when she was 18, just after the death of her father, Schembri's sister became very ill. Both her kid- neys were failing, and she was close to death. While treat- ment existed abroad, Malta was at the time not sufficiently equipped for her medical needs. "We overheard my sister's specialist telling the health min- ister not to send my sister abroad, lest this would set a prec- edent for all other patients," Schembri said. "Shortly after, I plucked up courage and spoke to the min- ister myself, requesting that my sister be sent overseas. After much effort, I persuaded him. My sister was flown to the UK, my mother donated a kidney, and she was operated upon. "Now, all these years later, my sister is still with us. So was it worth speaking up? Of course." Years later, Irene's son, her third child, was born deaf and blind, a consequence of a rubella infection that had affected his mother. "When I was pregnant with my son, I was asked on three occasions by my doctor – who knew from pre-natal checks that the baby would have these disabilities – whether I want- ed to terminate the pregnancy," she said. "I refused every time, and went through with it. Apart from being deaf, he was born with very severe cataracts in both eyes. And this was during the doctors' strike in the late 1970s," Schembri said, referring to the refusal of doctors to do a mandatory housemanship inside the Maltese health ser- vice. "I was offered that he be operated on in Malta by a well- known ophthalmologist, but upon speaking with a British consultant over the phone – who told me Malta didn't have the technology available to ensure the rubella virus didn't end up blinding my son completely – I refused the operation. "Instead, I spoke to the Maltese doctor and asked that my son be referred to the UK to undergo a special operation. It took a lot of effort, but, eventually, they accepted to send him to a London children's hospital where he underwent the procedure." Schembri says her son still couldn't see much right after the operation. "It was a very hard time. But I did all I could to learn about the condition and spoke to doctors to expand my knowledge. "My son survived, I defended him through it all, and he is also still around today." Schembri said the two experiences influenced her great- ly and led to her resolve to motivate patients to actively have a say in their treatment. "We are educating patients and increasing their knowledge of the Patient's Charter, which lays down eight principles, each setting out rights and responsibilities." The National Patients' Organisation is like a consumer rights group for patients, which guides patients in anything they want to do, without the need for them to enroll as mem- bers. "What interests us is their health and that they receive the services they deserve in a timely manner and in a proper way, members or not. Many times patients contact us because of issues they are concerned about, and we consult the Service Charter to best determine how we can assist." Schembri says patients are free to call the NPO for advice, and many times they call back to say how things went. "A personal connection is created, and often patients are looking for this – someone to listen to them, someone to help. That is what they also want from doctors, and they should get what they are entitled to," she emphasised. "My son's personal needs pushed me to extremes, and he is still alive today because I learnt about his condition and contacted people who knew more." "If my personal experience worked, why should I not be an example?" Schembri says she speaks passionately to patients to tell them to move forward. "If they can't do it alone, we will do it with them – that is why our motto is 'empowering patients – working with, not for patients'." mcosta@mediatoday.com.mt 'My son was born blind and deaf and his personal needs pushed me to extremes' Patients have rights and we speak up for them Irene Schembri is the co- founder of the the National Patients' Organisation, and her personal experience in the national health system inspired her to give patients a voice PHOTOGRAPHY BY JAMES BIANCHI MaltaToday speaks with National Patients' Organisation co-founder Irene Schembri, whose personal experience in the healthcare system inspired her to give patients a voice