There are differences between Australia and the UK that I have noticed, and here in the UK there is a definite postcode lottery as to local care.
In Queensland, all children with a Nueromuscula disorder are referred to Montrose Access which is headed up by Helen Posselt. When Aidan was diagnosed in May 07, he was referred straight away. We were told he would use a seated scooter before before he used an electric chair. I think most of the Qld boys use them, rather than manual wheelchairs. Here in the UK, they are given manual wheelchairs.
When we told them we would come to the UK to be close to my husband's family (my family is spread out all over Australia...my parents were 1700km away!) Helen Posselt told us no stairs. Not many 'bungalows' about, and so Aidan comes down on his bottom. We try desperately to limit the stair use, but do let him go up and down (on his bottom) because here in the UK, Michelle Eagle - Physio at Newcastle University - said it would be a case of use it or lose it, and careful use was ok, and so we have found a happy medium.
Aidan needed serial casting for 3 weeks when he was diagnosed to get his feet to 90 degrees, and then was cast for night splints, provided by Montrose Access. Again, I think all boys in Qld wear them pretty much from diagnosis, but you may need to check. We were also given an incline board for more stretching, and stetching positions for when Aidan was reading on the floor. Aidan was also doing weekly Hydrotherapy through Montrose on the Gold Coast.
Here in the UK, our local physio said don't bother with the extra stretches and refused Aidan access to hydrotherapy saying he wasn't applicable as hydro is for rehabilitative purposes only. I argued that this was for maintaining muscle function etc, and it is considered best practice as a therapy for dmd etc, all on deaf ears. 18 months later, he still doesn't receive hydrotherapy. I also asked for orthotic insoles for his feet, they are deformed slightly, and she initially resisted saying he was going to end up in a chair anyway! I fought, and won, and told GOSH and they were apalled.
In the end we moved!
GOSH is great, but on a local level the care Aidan receivs compared to that he received under Montrose Access in Queensland is far below par. Montrose Access understand DMD completely, Montrose Physios only care for kids with Nueromuscular disorders and I think there are roughly 100 dmd boys throughout Queensland under their care...they know their stuff on all levels, inside and out. Here I seem to be educating the 'professionals', although our new physio is far better!
We are beginning to think we have made a mistake moving here and are seriously considering returning some time this year...my parents are willing to move to SE Queensland to be close to us.
Mind you, again it is a local issue, I'm sure it's probably much better in other parts of the UK, but we have come from somewhere that was fantastic!
Oh, btw, we ended up moving as I told hubby I felt like I was going to go mad! We had 2 hydro pools in our area, one 200 yards as the crow flies...an NHS one brand spanking new and opened in 2008 for children with learning difficulties...Aidan, having a mucle wasting condition, was not applicable. It still makes my blood boil!
Gold Coast or North Brisbane...not sure yet! I adore the Gold Coast! Either way, we'd still be about the same distance in driving time as we are now!!
We have found GOSH to be a god send due to the local care, but Aidan is only affected by dmd physically, he doesn't have any associated developmental delays etc, and so have not experienced that facet of their care. Plus, I keep nagging GOSH for certain treatment ( a whole other topic), but I'm almost there with them!!