#sorry for the rant we had a rehab lecture today and it reminded me of some of the really lovely kids i’ve met

[corporalkiheart]

A relatively new problem in paediatrics is that as technology improves, as we have better early detection and better therapies, more of our patients are surviving to adulthood (which is fantastic!!!) but the adult medical world is woefully underprepared to support these people.

I’ve known so many colleagues with so many stories about how they transitioned someone to adult care who had been doing really well, who then died within a couple months. We care for children until age 16, but many of our kids with chronic and complex conditions we keep until 18/19 in the hospital - and for those with life-limiting conditions some people will continue to see them in clinic until they die.

I don’t think this is individual adult physicians’ fault, but it does show an inability of the system to support adults with disabilities compared to children - it’s harder to get, for example, daily chest physio, good multidisciplinary care, carers at home to the true extent that they are needed. It’s also related to a lack of knowledge, which to some degree is fair - many adult physicians didn’t learn about cerebral palsy, or many of the epilepsy or genetic syndromes, because those people just didn’t live to see an adult neurologist in the past.

However, this is no excuse. The world has changed for the better, people who used to die at 5 are reaching adulthood! But the medical world needs to adapt and improve and make room so that these gains can continue well into adulthood.

The world isn’t kind to anyone with disabilities, but particularly to adults. The lack of support is egregious but, in my opinion, fixable.