I have a 6 year old son, who was diagnosed 4 years ago with Asthma, but I don't feel anyone is taking any 'responsibility' for his treatment, and I have been left to cope alone.
His medications are Ventolin (salbutamol). Clenil (switched from Becatide) and more recently Montelukast. We visit Alder Hey Childrens hospital at least monthly, somtimes weekly with severe attacks. He is patched up and sent home, despite my requests for some type of care plan.
He sees the Asthma nurse at our GP practise 6 monthly, however she is not an Asthma specialist and did not even know what a care plan was. After many protests on my part, the best they could come up with was for me to try Montelukast, which after 5 months has made no difference.
I am now at a point that I don't kow if his Asthma is getting worse, or the hospitals change of policy on Nebulisers has made a difference. They no longer give them, unless it is a very real emergency. Although his attacks are slightly milder, they are lasting for about 6 weeks and requiring loads of steroids, but again, nobody is monitoring this.
Is it normal to be left to cope alone like this. I just feel like crying. We were due to fly to Tenerife this morning, but after another visit to the hospital yesterday he was declared unfit to fly. I am really concerned about what all of this is doing to his little body.
Can anyone advise on what I should be asking for, who should be monitoring what is going on?