In her first speech abroad her Royal Highness the Duchess of Cambridge said “I have learnt that delivering the best possible palliative care to children is vital.” A simple message endorsed fully by all who work in the field.
Joan Marston, Chief Executive of the ICPCN says, “It is what we strive to impart every day through the work that we do around the world.” She explains that the Duchess of Cambridge’s decision to focus attention on the children’s hospice movement as a patron of the East Anglia Children’s Hospices (EACH) and through her visits to The Treehouse Hospice in Ipswich in March and Hospis Malaysia in September is a welcome and timely validation of the importance of the work being done in children’s palliative care worldwide. It gives a real hope that children’s palliative care will become more widely recognised and funded.
Low referral rate for children
Dr Ednin Hamzah, chief executive and medical director of the charity Hospis Malaysia, told the press that “the very presence of the Duke and Duchess of Cambridge at the hospice sends a message out across the region, which includes Thailand and the Philippines, and highlights how politicians’ priorities can sometimes lie with other issues.” He reports that in Malaysia, despite having over 1,600 referrals each year to the hospice, only about 30 to 40 of these are children. The low referral numbers are attributed to the fact that paediatricians often feel that hospital care is best; that there is a fear of the concept of a hospice, and that many children live in areas without reasonable access to the services. There is a lack of political recognition for the importance of children’s palliative care and he laments that many adult hospice services around the country will not treat children. The ICPCN has found that similar concerns and challenges are echoed in numerous countries around the world.
Joan Marston, who has been in contact with Dr Hamzah since the visit of the Duke and Duchess of Cambridge goes on to say, “We estimate that worldwide more than 20 million children and their families need palliative care every year and the need is greatest in the developing world. Our very real hope and expectation is that this exposure will indeed send a message out to health professionals and politicians across the world.”
While there has been an encouraging increase in the children’s palliative care services worldwide, the unmet need remains overwhelming. More than half of the world’s countries still have no children’s palliative care services at all, leaving millions of children to die in pain and distress every year.
After the wonderful exposure from the visit by the Duke and Duchess of Cambridge, Dr Hamzah explains that he has decided to ‘seize the momentum’ to advance the cause of children’s palliative care in Malaysia and in other Asian Pacific countries. He reports that they have already had a productive conversation with staff members from EACH, who are keen to partner with them and assist where they can, that a steering committee for the National Paediatric Palliative Care Programme is in the process of being set up, with an initial meeting in November, and a December workshop is being planned with the involvement and support of ICPCN. The drawing up of national guidelines is also on the table for discussion. These developments clearly indicate the positive ‘knock on effect’ of the Duke and Duchess of Cambridge’s visit to the hospice and make the value and continued worth of their support impossible to quantify.
Raising the profile of children’s palliative care
Joan Marston says “Children’s hospice programmes internationally are encouraged to use the exposure provided by these two events to raise the profile of the work they are doing in their corner of the world. The importance of advocacy should never be underestimated, and while we believe that the calibre of people who work in a children’s hospice programme are very often the best ‘walking, talking advocates’ there is still enormous benefit to securing the patronage of high profile celebrities and people within their own countries.
“I urge you all to find a patron who will take the clear message of the Duchess of Cambridge to the decision makers in your part of the world that ‘Providing children and their families with a place of support, care and enhancement at a time of great need is simply life changing.’”