Where we are: Scottish Healthcare Standards for Congenital Heart Disease.

Back in 2012 The Somerville Foundation appointed me as their (voluntary) Campaign Manager in Scotland after seeing me present evidence to The Scottish Public Petitions Committee at the Scottish Parliament.    I had submitted a petition to the Scottish Government to ask for Healthcare Standards and improved care provision for adults born with a heart condition following various critical challenges with my own adult care and after reaching out to others to find I was far from alone.  Congenital Heart Disease (CHD) is the most common birth defect, affecting 1 in 125 babies.  90% will now survive into adulthood compared with just 20% in the 1940s. We can thank advances in modern medicine for this growing population.  This is a heterogeneous group including people with a wide variety of different cardiac conditions of varying complexity.  Currently, there is no cure for more complex CHD with treatment and lifelong monitoring required. For today’s adult survivors, treatment has often been experimental while their care provision has all to often not evolved in time to meet their needs and many patients are lost to follow-up.   There is an estimated 16,500 such adults in Scotland, although worryingly around half are lost to the system.  At least a further 135 patients each year make the transition from paediatric services in Glasgow (NHS National Waiting Times Centre, 2012).

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