Care for Duchenne patients in Wales has always been substandard and I did not think it could get much worse but I have found out that when our respiratory consultant leaves next month there will be no sleep studies done in Wales. We will be expected to travel to GOSH or Glasgow!! to have this done. Also that even though the respiratory consultant will be replaced he/she would not be attending the muscle clinic that look after my son. I will be attending a cross party meeting on Wednesday with MDC at the Welsh Assembly and the Health minister Edwina Hart will be at the meeting. I intend to ask her why these services no longer exist and what she is going to do about it.

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It's scandalous that they have done this. It's vital that breathing is monitored or a boy could develop hypoventilation during sleep, this in turn could lead to illnesses being picked up which could turn into life threatening pneumonia. This has got to be changed! Taking a child to Glasgow is too bloody far for a routine test to be carried out and if the first result is inconclusive it might put families off doing that trek every few months. Edwina needs to change this! Good luck lynne, give them hell!
Thanks Ian
Hope you do not mind but I thought it would be a good idea to read out your tribute poem. I am aware that you asked AD to read it at the lobby last week but not sure if she was listening!!
will let you know how I get on

Ian Anthony Griffiths said:
It's scandalous that they have done this. It's vital that breathing is monitored or a boy could develop hypoventilation during sleep, this in turn could lead to illnesses being picked up which could turn into life threatening pneumonia. This has got to be changed! Taking a child to Glasgow is too bloody far for a routine test to be carried out and if the first result is inconclusive it might put families off doing that trek every few months. Edwina needs to change this! Good luck lynne, give them hell!
I second that. Good luck and give them hell!

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