My Ds2 was born last August with bilateral talipes/clubbed foot. I knew about it from the 20 week scan and researched treatments. My nhs trust practced the ponseti method (non surgical approach) He had plaster casts from 6 days old to manipulate his ankles into a normal position, a op at 7 weeks to loosen the achiles tendon followed by maintaining the correction with a pair of boots joined in a certain position by a metal bar.
The first boots and bar ombo was made of stiff leather ( known as the dennis browne boot/ markell boot) we struggled with this brace for 5 months but it was unsuitable for our baby. He wouldn't sleep in it and had blistered feet and constantly pulled his rightg foot out of itg.
I heard of another brace called the mitchell/ponseti brae which was more expensive but much more affective than the markell.
I wrote a 9 page letter to the pct back in april, stating the reason why my ds2 should have the more expensive brace (ie in the long run saving the trust money)
After chasing an answer for 2 weeks I was told on wednesday that th PCT refuse to fund the supiriour brace.
Finally my question is
I can fight the PCT for funding or try and move to a neighbouring trust that supply the mitchells as standard. But need to go to my GP for PCT approval
I need some advice from someone who has battled before with a pct.
Help please some one must have been in a similar situation before [hmmm]