The vision for the first children’s hospice in the Middle East has been in development over the past twenty years. The state of the art, award-winning building was officially opened in January 2012 by His Excellency, the Amir of Kuwait and is shortly to open to full clinical services on site. However, children’s palliative care services have been in existence in Kuwait since 2006, delivering care both in hospital and in the home.
The Kuwait Association for Children in Hospital (KACCH), founded in 1989 by Mrs. Margaret Al Sayer, is the umbrella organisation driving children’s services forward. Having founded a Kuwait based ‘child life specialist’ course, KACCH went on to establish play therapy within acute hospitals and lobby for dedicated children’s wards in Kuwait. Once KACCH began work in the children’s cancer wards, there was immediate recognition of the requirement to provide psychosocial support for children with advanced malignancy. As a response to direct need, a home palliative care service, with the support of a network of volunteer clinicians, was formed. Abdullah, aged 4 years old with metastatic neuroblastoma, was the first child to be cared for, and to die, at home. It was this powerful experience within the community which created Abdullah’s legacy: ‘Bayt Abdullah’ which in Arabic translates into ‘house of Abdullah’.
Recognition of the significant palliative care need in Kuwait and a paediatric population of approximately one million (35 % of whole population) led to plans to improve services and increase capacity. There is no community based paediatric healthcare service in Kuwait and existing services accommodate acute hospital care only, with the focus on inpatient care, as such children can be hospitalised for many months, even years. In contrast to Western services, children with cancer have particularly poor provision compared to those with disability.
The conceptual design of Bayt Abdullah, from a functioning Ferris wheel, a magic carpet walkway and a look-out tower to miniature doors, has the child and family at its heart. Sitting in a bay on the Arabian Gulf, every bedroom has an inspirational view of the sea and in winter time, the pink flamingos can be seen nesting on the shores of the adjacent nature reserve. Individual rainbow coloured ‘chalets’ stand in line overlooking the bay; the Kuwaiti tradition of holidaying together as a family in a seaside chalet is incorporated into the delivery of respite care services.
With a ‘blank canvas’ Bayt Abdullah has the opportunity to create and build its own unique, culturally appropriate model of care. Aiming to deliver a fully comprehensive, truly holistic palliative care service for all children living in Kuwait, BACCH will be the ‘hub’ for an array of services:
- On site and at home 24/7 clinical support
- Day Care
- In patient services
- Outreach Services: hospital consultation and liaison
- Home care
- Respite for families in chalet style accommodation
- Full entertainment and activities programme
- Rehabilitation programme; including hydrotherapy and gymnasium based programmes
- Nutritional support programme
- Pharmacy with dedicated pharmacist
- Family support including sibling care and bereavement
- Library and information gathering services for children and families
- School and education services
- Theatre and auditorium for shows for, and by, children
- On site conference facilities to facilitate the development as a local and regional education and training center
- A centre for research activity
Despite the wonderful resources and ambitious plans, the essence and energy behind Bayt Abdullah lies within the community from which it has grown. The commitment shown through fund raising, volunteering and public support of this project is impressive and very moving. Families and children who have in the past, and are currently, using palliative care services reflect the wonderfully varied cultural experience of living in the Gulf region: warmth, generosity and exceptional hospitality are the foundations that create an easy environment of trust.
The lynch pin however is the commitment by the team who have come together from different backgrounds and all corners of the world to put children’s palliative care on the map of the Middle East. As in any “start up” there are barriers: the unknown specially, legalities regarding opioid prescribing, concerns about resuscitation issues, poor education in the field and lack of man power and resources. However, building the work force and implementing practice has already occurred and the vision and direction is clear; even if the road is not straight, good navigation will help BACCH to reach its destination. Where is that destination?
To begin with a sustainable, national and regional centre for children’s palliative care in the Middle East.