Megan I do agree with you that we are certainly privileged to have affordable medicines etc for treatment of our children with CAH - the luxury of having bone ages done etc however true this is, I do not consider that everyone is getting satisfactory treatment!  This is something I feel very strongly about, I feel that because our doctors have good medical knowledge, excellent laboratory support and the facilities for all sorts of scans etc it makes it even more inexcusable for the lack of proper treatment.

 

As an example here in the UK you are not guaranteed to see the consultant, so you see a registrar who is normally on a 6 monthly rotation, therefore no continuity of care!  It takes weeks to get blood results - 17 OHP for example are done in batches and as parents you do not get a copy of these results at all. If you wealthy and were being seen privately that would be a totally different matter!  I think there is over a 6 month waiting time to see a consultant endocrinologist in this country, and as I said you don’t get to see the consultant.  Some test results such as the blood spots can take month to get back and this is why new born screening is not done here - the results take too long! 

 

I have just read and copied only part of a post here from the Addison’s Board  ’the pharmacy at a major London teaching hospital has been giving hydrocortisone acetate to Addison’s patients, because the endocrinologist did not specify hydrocortisone SODIUM on the form the wrong sort of hydrocortisone there is another form of liquid injectable hydrocortisone, hydrocortisone acetate 25mg/mL. This is a micro-crystalline suspension, ie basically inert, and is injected into painful joints to treat rheumatoid arthritis etc. It is too slow acting to be effective in an emergency; it is not licensed for intra-muscular injection.’

 

NOT all hospitals in the UK offer shoddy treatment but the one my child used to attend did, look at Liz - why should her son have to wait for important tests? A BBC news report featured a story this week of an elderly lady who waited 9 hours for an ambulance which a doctor had called ’blue light’. 

 

Yes mistakes happen all over the world but then some doctors have only just agreed to issuing emergency kits over here!