In the past year we have lost our long standing psychiatrist, our ADHD nurse, our dietician, our physio and experienced ever worsening care.
Despite having a child with complex needs on ADHD medication with a Team Around the Child system in process only the physio got replaced - and by someone who neither knows our family or cares two hoots. Obviously she knows better in five minutes than professionals who have worked with my kids for 5+ years though, which is just as well as few kids with a socio-communication disorder can bypass the years (yes, years) needed to build up a relationship to share their feelings and concerns. (And of course it cuts to the chase and saves oodles of time which would be wasted discussing the case with a parent who is obviously clueless having lived in a bubble for years not caring night and day for their kids.)
|Roulette Wheel by Hakan Dahlstrom|
It's also true that sadly many dieticians are less clued up than parents when it comes to feeding children with food allergies. Unless you win the game of Russian Roulette and get someone who "gets" it, or you are deemed worthy of tertiary level support you are probably better off saving the NHS some money and muddling through. After all, nutritional bloods are only a rough guide, aren't they? Definitely best ignored, it's a can of worms you really don't want to open.
Clinic letters rarely get sent to the right country, let alone the right hospital - and the jackpot of the letters actually reaching the right consultant is just pie in the sky.... In their defence whilst typing clinic letters in a distant room in India, the Australian hospital equivalent did come top of the list when Googled, so it was a pretty good hunch to send them there. Which is probably why our GP Practice thought it would be more accurate to take a wild stab in the dark and make up the details for our Summary Care Records. Inspired. The GP's secretaries do actually speak good English, but you do need a clinic letter to work from when writing notes, a "hedge your bets now" approach is not much wide of the mark because when the clinic letters DO arrive they are woefully inadequate at best or utterly incorrect at worst (medication errors, dosage errors, diagnosis errors, treatment errors) so that reading them is probably a waste of time.
Then there was the time when H's records in London were merged with another child with the same name. Who also lives in the same town. This other child was in fact a day younger, but of course it was so more likely that this was an error, and it was the same child. With a really common name.
Of course it was.
But it was just as well we didn't travel to London for the various admissions that were booked in my son's name, as we would have wasted the train fares. And my time.
We've seen secretaries to key consultants change faster than Mr Ben in a hurry (sorry, 70's kids' TV joke) and almost none of them have English as a first language. I suspect they are paid a pitiful amount with no incentive to stay - certainly the food there is not a reason to stick around. The local consultants have more luck retaining their secretaries, I think they have discovered some secret survival strategy - which mostly involves not answering the phone.
Our local hospital has got money saving down to a fine art. One department doesn't issue review appointments, their policy is to wait and see if the patient remembers and calls! Mind you they probably halve their waiting lists this way and should win some award from the government. The children's department adds a few months to the requested time each time a review is sent out, then a couple of months later it's bumped onwards a few more. And physiotherapy have a budget-cutting policy to be proud of, automatically discharging any child not seen within a year. (Which is even more cunning when no review is sent out during that time, and when you call to request one you need to go Back to Basics and start again. With the four month wait to be seen.) No wonder their A and E is first class, so much money saved from elsewhere! The only flaw in this policy is that with no out of hours care, no Walk In, and over stretched GPs A and E is just about the only port of call. So it needs to be good.....
Those without diagnoses, with a blurred collection of symptoms and partial answers are those who slip through the net at times like this. We've devalued and under-resourced our NHS in the name of good housekeeping. Permitted too many from outside the UK to access it for free, turned it on its head and shaken it up to see what falls out and left those who have least contact with the chronically sick to run it and hold the purse strings.
But this isn't about politics. Or about funding.
It's about people.
About the elderly, about children - MY children, and about you and me. Not wearing short-sighted goggles and thinking tomorrow will never come.
And it's about responsibility, and respect. About caring and CARE.
Because right now we are stockpiling enough time-bombs for the future to blow the NHS wide apart. Let's hope the people with responsibility remember to retain our respect and show some care.
The gloves are off.
I just don't know whether I'm sitting in the dark holding a cup of tea in despair or gearing up for a fight.
|"Boxing Gloves" by Julia Manzerova|