I have written to Nicola Sturgeon, MSP on numerous occasions over the last few years as have many other ACHD patients. Recently, Michael Moore, Secretary of State for Scotland has also written to Nicola Sturgeon, MSP on my behalf. Any responses have been unsatisfactory and usually indirect.
More recently, I have been working with the NSD (National Service Division) following a complaint I made about my care last year. After meeting with them to discuss my concerns we formed a working group and have met monthly to review progress. However, progress is slow and seems to be hindered by a lack of political interest and drive. I have also highlighted my concerns with the Long Term Conditions Alliance (LTCAS) and I am a member of their Patient Involvement Network to try and raise awareness about ACHD. I also work as a patient volunteer for the Somerville Foundation (formerly known as Grown Up Congenital Heart Association - GUCH PA). I have raised my concerns with Bravehearts who support fully my submission of this petition.
Prior to the development of the Scottish Parliament and devolution of health I wrote to the Department of Health when I first left paediatric care 16 years ago, many MPs and the then Prime Minister, Tony Blair.