I spent 3 weeks at a unit which houses orphans with special needs, some of which include learning difficulties, autism and genetic syndromes. As a trainee clinical scientist in genetics I will not routinely have contact with our patients, so this provided a rare opportunity to meet affected children with classic syndromes as well as learning disorders. New home life Kenya2 In addition, it allowed me to experience a setting in which healthcare science is a very limited and unknown field and permitted me to reflect on how healthcare scientists fit into the patient pathway.
The children at New Life Home Trust are really well taken care of; they receive the best available medical care and their individual needs are met as far as possible. Disability is still misunderstood in Kenya, and quite often people believe that disabilities are a result of curses or witchcraft. To help overcome this, the children are taken out into the community to meet the locals, they even get taken swimming! This helps people see that although these children may look different, and although they cannot speak, they still enjoy the same things as every other child.
You are a Genetiwhat?
Clinical genetics as we know it does not exist in Kenya. There is a lack of basic education around genetics and inheritance, and the vast majority of people do not understand how genetics might relate to disease. Two of the children at the orphanage have fairly classical genetic syndromes (or so it is believed!), and I was able to shed some light on how those patients would be managed in the UK, as well as explaining the underlying genetics. My role while I was in Kisumu was mainly as a source of information for them, as well as an extra pairs of hands. However it provided me with a real opportunity to see how healthcare science fits in with the patient pathway.
Healthcare scientists – the missing piece!
While it might seem obvious that children with a suspected genetic syndrome might need the help of a geneticist, you would be forgiven for not realising that actually clinical engineers, neurosensory scientists, cardiac scientists and possibly numerous others would be of benefit in an orphanage in remote Kenya.
New home life Kenya
However it became very apparent to me that it takes all of these people to ensure that a patient has the most successful treatment. While the orphanage was geared up to be a school primarily, they did have doctors, dentists, physios and speech and language therapists regularly visiting. However even with all those professionals, there was still no one to give them a definitive diagnosis, or someone to ensure the specialist seating equipment was appropriately fitted. Healthcare scientists, it seems, are those people that fill all the gaps around the more traditional clinical professions.