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Little Stars – Royal Palliative Care Advocacy – Linges' Story



the Duke and Duchess of Cambridge was visiting Southeast Asia and it was thought that would it be a wonderful idea if the Duchess who we know was already a patron of a children's palliative care facility in UK was to visit and potentially make a advocacy speech over here in in Malaysia pediatric palliative care is a very important aspect of care for the community here we find that many people are not aware that children do get ill they do get life-threatening life-limiting diseases they do suffer and they do need care oh my name is Fingaz really I'm a 16 years old this year and I'm from nation I want to be a fashion designer I like clothes and I look for like drawing so name is suitable for me the wife of the British High Commission Gail Featherston came by to Hospice Malaysia because she had been a volunteer at a hospice in London I first got interested in palliative care when my own mother died and I it was a revelation to me just how as they say life enhancing palliative carriers over a period of time we started to think about how else that we could work together in trying to move forward palliative care in Malaysia the key thing was raising the profile of palliative care in this part of the world so we suggested one of two possible charities one being the hospice and to our delight they felt that the hospice needed them more Liam and I are hugely excited to be in Malaysia this is our first ever visit and I absolutely delighted to have been invited to join you all here at hospice Malaysia it is so exciting to learn about the country's very first pediatric palliative care program when we arranged for the royal visit we wanted to put in some elements that we felt was going to be very helpful for pediatric palliative care one certainly was that you Dutch's meeting with children the fact that with life-threatening illness and I think that that achieve his purpose remarkably well Lingus wanted to meet the Duke and Duchess and she got her wish is it the same they asked me about testing them and out rolling what are the things you like and I feel like a little record myself so when the Duchess of Cambridge came and the Sultana here was approached to be the national patron for this we persuaded the Ministry of Health the Minister of Health to approve a plan to develop paediatric palliative care for the country we engage in Royal Highness Raja Cyrus of jeho who I already know has been an advocate of palliative care to come forward and put a voice through to act as a motivator for the paediatric programme which she wonderfully consented to I find it very fulfilling because it's it's it's nice just to see that you can make a difference you know just for a few hours in a day and and knowing that especially with the children here in the cancer ward or those who have other diseases the fact that they are in pain and that if we can make a difference you know just just for for a few minutes or a few hours that that really does make a difference to me anyway I think she's she is like a shot in the arm for us she's got stand because through the royal patronage we've had palliative care service mushrooming in this state of johor always a big state and there are many district hospitals here and because of her the royal interests the state director has been encouraging the various pediatricians in various states to develop this if we do not get involved and we if we stay away it's not going to be of any benefit to any of our society so I'm hoping that if I can make a difference and if I can try and get other people to be interested that that's you know good enough for me just the sheer fact that somebody as high-profile as Her Royal Highness the Raja Cyrus and her Royal Highness the Duchess of Cambridge of both both serious and passionate about this movement all automatically makes it a subject worth discussing the idea that children can die can have pain is something that people don't seem to comprehend very much and yet children are suffering in terribly unfortunately the parents do not know what's happening there and did not know what to do for help we just need increasing awareness to clinicians that pain suffering of children is real it's a real problem we can alleviate that parents and families need to know a lot more can be done for their loved ones it's something that I feel very strongly about because to see these children you know and to know how how much pain they're in at any one time that that's heartbreaking I think her Royal Highness Raja xerath here continued to visit our our pediatric patients and has since initiated a bush within her own state for paediatric palliative care services the pediatricians around the country were motivated to such that we now have a paediatric consultant group with a special interests in pediatric palliative care that wants to see things moving forward I can't speak for other countries but I hope the effect of something like this also would have reverberate around the region for people to think you know it doesn't just necessarily need the minister or the government to do this you can do them something yourself just do what you want and that's support south and just go home

Glenn Chapman

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