A cancer survivor, a fibromyalgia patient and two chronic pain sufferers have come together to set up a group that aims at “advocacy with patients, not for them”.
The first of its kind in Malta, the National Patients’ Organisation will be launched today after these four patients realised that no one could voice their concerns and fight for their cause better than them.
Two of them – president Irene Schembri, 66, and secretary Jane Giudice, 54 – hold dear the belief that “no one can help you unless you help yourself”.
The idea was hatched when the founders met at a conference in 2016 that was organised by Ms Schembri as part of the international event One Hundred Cities Against Pain.
Apart from being a patient herself when she fractured her ankle, for years Ms Schembri had had to speak up on behalf of her relatives when they were battling health issues.
When 46 years ago all seemed lost for her ailing sister Dorothy, then aged 21, Ms Schembri could not rest until action was taken and her sibling underwent a kidney transplant in the UK. Her sister was saved through a kidney donated by their mother.
Similarly, the eyesight of Ms Schembri’s son was saved after his parents refused to give up when they found one closed door after another.
Patients sometimes find themselves in a frustrating situation of contradictions
Meanwhile, her colleague Ms Giudice is a fibromyalgia patient. Although nowadays she is officially recognised as a patient, it took years for doctors to recognise her condition, as one professional after the other told her she was “being irrational”.
But despite the recognition of her condition, she feels that the available treatment regimen does not recognise her ailment as a chronic one, and she is only provided with a limited number of physical treatment sessions.
“Patients sometimes find themselves in a frustrating situation of contradictions. On one hand, professionals and the authorities call, for example, for work flexibility and a better understanding of the various conditions, while on the other hand, the same professionals and authorities fail to put this in practice,” she said.
The two women noted that while Malta had one of the best international health systems, patients sometimes felt that the professionals within it did not sympathise with them as human beings, but just aimed at treating the medical condition.
While the founders understand that patients could be afraid to speak up as they may be labelled, they know that most often, their situation cannot be improved unless they speak up.
However, the aim of the organisation is not only to empower and educate patients about their rights but to also raise awareness about their responsibilities.
This includes taking care of themselves and avoiding circumstances – such as obesity – that may lead to chronic conditions, and also complying with the recommended vaccination regimen, which at times saves lives.
Today’s launch of the organisation will be held under the distinguished patronage of President Marie-Louise Coleiro Preca.
The launch is sponsored by the Marigold Foundation.
The group plans on holding a conference in Gozo and Malta on June 8 and 9, respectively, with the help of the Small Initiative Scheme awarded by the Malta Council for the Voluntary Sector.
For more information on the patients’ group, send an e-mail to npo.malta@gmail.com.