Today we had more appointments for William at Addenbrookes – Lung function & Cardiology.
I’m proud of him again, as you can see on his post he was amazing.
This is not normal for me to say but today I too was proud, of myself. Today as we walked into his Cardiology appointment, his paediatric cardiology consultant, who we are lucky enough to have as William’s specialist, welcomed us with a big smile. He started to assess William with his echo cardiogram and once he was happy it was all healthy another doctor who was learning took over scanning William.
The consultant started to tell me how I should be proud. I was a little confused so he went on…. 18 months ago I took research literature (I was kind given by a Duchenne friend) to him about ACE inhibitors for duchenne boys and how they can benefit them to start them earlier than what the standards of care state. He agreed after reading the research and put William on a daily dose of ACE inhibitors.
Since those discussions, unknown to me, the consultant formed a working group across Addenbrookes and Cambridgeshire to look at the care of all Duchenne boys under him and his colleagues. They have since seeked further research and have updated their standards of care for ALL boys. Even better, this was across neurology too. So we have all the relevant teams now working together to ensure all boys are getting appropriate and consistent care. He told me I should be proud as it was me that drove him to it! He also asked me to keep in touch as I spoke about Duchenne UKs DMDCare UK.
So although it’s been a very long week with work, 2 hospital days, every night on the Duchenne Patient Academy and a long weekend of Academy work too – I am proud of myself and hope that this means more boys with DMD get access to the correct care and advice they are entitled to.
#duchennemusculardystrophy#standardsofcare#duchenneuk#dmdcareuk#duchennePA2020 — feeling proud.