E's care is something which i have taken a keen interest in since we got the diagnosis. I have become mildly obsessed with his check ups and what additional care he may benefit from.
This is new to me, i usually have to reintroduce myself to my doctor each time i go and visit. So interaction with the healthcare system is a new and challenging minefield. This has been exaggerated by us apparently living in a difficult area. More on that later.
E was born and received initial care at Epsom hospital. This was chosen from 3 options for both children - ease of getting there, parking etc etc made it an easy choice. With E, the care has been amazing (to be fair it was great with C too - just shorter lived). Dr C is the lead consultant and has played a major part in the last 9 months of our lives. He gave us the news in a very compassionate way, he has guided Es care through a confusing myriad of tests and clinics, we receive the letters and turn up - this even includes a cardiac specialist making visits to Epsom rather than us travelling up to St Thomas's (Evalina) once every 3-6 months.
So far, you are probably thinking - sounds pretty good, where's the lottery? - Us too until of course the care requirements include "portage" and "therapies". This, in my language, is the non medical care - physio, speech therapy, occupational health. For this, apparently we live in a "diffficult area". This care is supplied through a doctors surgery - this is where the finding is provided - and then paid out from. So Epsom is one borough, our doctors is in s second borough and we live in a third. None of this stops us choosing Epsom as a hospital, or for that matter receiving care from our doctors surgery - however, this is where the simple inclusive system ends. Take a bow Kingston health trust - take a bow! Our surgery is in Kingston and they receive the funding for Ethan's care - however, it has taken 6 months, numerous phone calls and more letters than you care to think about from various medical professionals involved with Ethan's care. So, where are we now after all this - apparently they have accepted their responsibility (despite us living in a "difficult area"), and the latest is - Physio - high up the list, month or so; Occupational Health - 3 months or so; Speech Therapy - "wouldn't hold you breath" - you heard me!
Until very recently we were under the misguided assumption that this was portage - but it isn't. Portage is an all round service for pre school children with additional needs. The borough in which we live has now made contact about this and we are being seen next month!
So Kingston, my son is not important enough to you.... well this is how important he is to me. When recently suggested that if the hospital development care was shifted to Kingston as it may make it easier, i responded that i would sooner move house into the area covered by Mid Surrey!