Bloody Bureaucracy.(warning long)

[LetThereBeRock]

Just want to say that I take my hat off to all of you. How you manage to retain your sanity with dealing with what seems like miles and miles of red tape at every turn is beyond me.

I had a tiny glimpse of how complicated, if not near impossible, getting any help,even the most basic, can be when you have a disability or a family member with a disability.

I went with my mother,who has been having seizures for 15 months now,to try,for the third time, to get her concession bus pass.

The first two times we tried,her doctor wouldn't sign it as she hadn't been diagnosed, in spite of the fact that she's on anti convulsant drugs,attends the epilepsy clinic, has been admitted to hospital a number of times and has had some seizures while in that doctors surgery.

Finally today after waiting three weeks for the form to be signed, we were able to take the form to the Transport Scotland depot. The dr had written on it that my mother still doesn't have an official diagnosis, but has seizure like activity, is on medication and attends the epilepsy clinic.

We were told that only a diagnosis of epilepsy will do. I argued that anyone who has any type of seizure has to surrender their licence,and that there are non epileptic seizures,but no apparently if you have seizures with no official diagnosis you can't get a concessionary bus pass,considering that a diagnosis can take years,or if you have non-epileptic seizure.

I lost it. I ended up pissed off and in tears and ranting on about their lack of disability awareness.

Eventually he called his manager who decided that it's probably ok but can't say for sure if my mother will get it.

We've had this experience at every turn ,from doctors,consultants, private consultants everyone.

I know the majority of you will all deal with far worse than that,and have to fight for years for even a little help.WTF does it have to be so bloody difficult? It's ridiculous that people have to fight so hard and for so long to get things for their children that nt parents take for granted,things that are necessary to give them a reasonable quality of life.

There's been a lot of people on MN lately throwing about phrases like 'sense of entitlement' well sod them, they have no idea,little brain and no compassion. They should be ashamed of themselves.

Apologies for the rant.

And now people are expected to grovel because they're finally being provided with the most basic of needs,thanks to Riven as much as,if not more than DC.

The politicans should be grovelling before people for not having removed the limit long ago.

Is it really showing a sense of entitlement to not want your child to have to sit in their own shit all day and develop problems as a result because you don't have enough incontinence products?

Letthereberock
Hope you are ok.
Have you tried contacting Epilepsy Scotland? They have a helpline and can possibly advise you. Hope this helps

Bureaucracy right enough!
There is another way you can go about it, its a little long winded but will work if she is turned down.
Apply to the DVLA for a driving licence, they will ask if she has had any seizures etc within the last 12 months and when they turn her down she can use the letter as proof of entitlement to get a bus pass

info here epilepsy scotland

my sister is epileptic (has been since secondary school) and had the bus pass which was really useful as she is a teacher at a school on the other side of Glasgow.
She was really well for ages and hadnt had any seizures so lost the bus pass, within a month or so of losing it she had a seizure and had to re-apply all over again, typical!

Thankyou both. I'm ok now, if still a little pissed off.

I will contact Epilepsy Scotland. I didn't think of that for some reason.

I feel awful for whining about it when people here have to fight much harder and for far longer than that while dealing with much more, but it made me realise just how many barriers there are to get even the slightest bit of help.

I hate the way they act as though they're doing us a favour, or as though we're asking for the earth not just a bus pass/incontinence products etc.

The bureaucrats seem oblivious to the fact that people would much rather have their family member in good health than have the so called 'perks' of having a disability.

I've seen a few people refer to such basic provisions as perks.

yeah perks!

my sister has a few times mentioned how lucky i am being "given" a car until i pointed out that i actually pay £49.85 for it, she said £49.85 a month was good but i pointed out thats a week plus it had a large deposit as its a WAV so over the 5 years its over £20K.....she had thought it was indeed "a free car"

I am sorry you are having a hard time of it.

I hope you manage to get the bus pass for your mum.

And, please, don't worry that your problems are not "big enough" - everyone's problems are big, at that moment, in their lives

Butyes, I wish the battling was not so relentless.

Want nappies for an incontinent child? battle for years

want a decent education? another war

want a blue badge? not likely, even if your child is a runner and has no sense of danger

it just goes on and on.

I wish people would have a better sense of humanity - we are not asking for the world, just for something which would make our lives immmeasurably better.

Letthereberock - do try Epilepsy Scotland. They are ace and will do their very best to help