This is the first of its kind paediatric hospice in the Middle East and probably one of only two programmes in that region, paediatric palliative care programmes in the region, the other one being a fledgling programme in the West Bank. So I work in a place called Bayt Abdullah Children’s Hospice which is probably one of the prettiest hospices in the world. Bayt Abdullah, in Arabic it means Abdullah’s home. It’s called that because it developed as a response to the suffering that our founders saw in relation to a little boy with neuroblastoma who was Abdullah and they made a promise to Abdullah that he would never have to go into a hospital to receive treatment again. There was no paediatric palliative care, there was no hospice, in the Middle East and the Al-Sayers, who were the founding members of Bayt Abdullah, built this fantastic hospice as a response to what happened in Abdullah’s life.
Bayt Abdullah has been in service since about 2012 and we’ve started caring for patients, children with cancer, but we have over the last year and a half moved towards the non-cancer palliative care needs of children as well. We are the national palliative care provider for children with life-limiting and life-threatening diseases in Kuwait. In many ways we are pioneers so we are cracking into a medical system that’s not really very welcoming to the concept of palliative care and more so in paediatrics where children should not die is a very strongly held societal value. Also this is the Arab Islamic world so that makes things a little bit culturally different from the background that I was trained in but it’s exciting in terms of the challenges. My foundation in palliative medicine really came out of the Cardiff Diploma and Kuwait has been a fantastic opportunity for me to be able to apply that as well as learn a little bit more.
Over the last ten years palliative care has moved forward in a big way with newer medicines, newer approaches to care, maybe even refining the definition of what palliative care should be. Should it be specialist or should it be standard of care that generalists practice as well? What has helped me stay up to date, to an extent, has been accessing internet based learning and having those peer interactions with colleagues either in the United States or in the United Kingdom; that has been fantastic. In Kuwait, given the very high racial setting we’ve had the opportunity to integrate the best of all worlds. So we do have that oriental-based cultural approach but we are able to bring in the technology and the expertise of the West to be able to roll it out. So it has been fantastic in that sense.
Bayt Abdullah is a very unique and a very robust model to deliver paediatric palliative care and that’s because at the hospice we provide in-patient based hospice care for pain and symptom management and also for end of life care. We also have out-patient based and day-care clinics where children can come in with their families and make use of all the facilities that are available. We have respite in chalets which might be slightly different to the concept in Britain; so the whole family comes to spend the weekend in the chalets. We also do outreach and expert palliative care advice to other hospitals in Kuwait and we are available 24 hours on a telephonic service. We are accessible to other care providers as well as to families.
So Kuwait has been really exciting and I’ve seen the facility grow in the last four years so that’s been fantastic. What I would also like to focus on is how the team grew in the last four or five years where we were a very limited palliative care specialist capacity to now where we have most of the team that has been trained in palliative care. Two of my colleagues, one of them a physiotherapist is on the Cardiff Diploma this year and they’re absolutely enjoying it. So Bayt Abdullah was able to build capacity around a very robust multidisciplinary team and we are able to cater to a lot of different problems related to palliative care because we have that really diverse interdisciplinary team. We have a clinical dietician who works a lot with end of life care, nutrition and hydration, and she does what she calls tasters where children have the opportunity to enjoy their favourite taste towards the end of life, whether it’s strawberry or chocolate ice creams and so on. We have physiotherapy that goes into the houses or into the outpatient or the respite or other hospitals and might help with simple tasks such as positioning but that somehow will impact positively in terms of pain management. We have specialised nursing, we have clinical pharma with a lot of daily hands-on, especially in terms of drug interactions because polypharmacy is pretty much the norm towards the end of life. We have a lot of expressive therapists, so we have music therapy, drama therapy and we have child life specialists. So we’ve been able to develop a really rich and vibrant interdisciplinary team. Bayt Abdullah is being showcased as a new model which is very comprehensive and probably should be standard of care across the world. So I’ve been very proud to be a part of that.
Where do you see this model going in the future?
Thinking about where Bayt Abdullah would probably go to in the future is we are quite mindful of the fact that we don’t have capacity to take care of every child that needs palliative care across the country. We are very focussed towards developing palliative care capacity within the other community hospitals or within the community itself so that some of the generalist palliative care can be done by other teams which are not necessarily working out of Bayt Abdullah. We also have a homecare team but then that’s only one homecare team and that’s probably something that we might want to expand.
We are working towards hopefully becoming the centre of excellence for paediatric palliative care within this region and it’s particularly relevant because of the cultural context. So the cultural context of the Gulf isn’t really exactly replicable anywhere else and that’s something we are focussing on. So we are building capacity, we are trying to go into education and right now we are also looking at a needs analysis of palliative care within Kuwait. So that’s a huge research piece that we are doing at a national level and that’s hopefully something that will shape further service development out of Bayt Abdullah.
