Disabled 'failed by NHS'?

[Osem]

http://news.bbc.co.uk/1/hi/health/7959730.stm

Sad and shocking!

Our experiences of the NHS with our disabled son over the years are indicative of the problem. We've been lucky to have a very good paediatrician for the last 5 years but have found our other dealings with the NHS to be frustrating in the extreme. The problem is characterised by an inability of staff ranging from ambulance personnel to nurses and even specialists to take on board the problems our little lad has and all too often an unwillingness to listen to what we're telling them about his needs/issues and a reluctance to modify their procedures in order to lessen the trauma caused to him and improve the chances of a successful outcome.

I am certain that the vast majority of these people care passionately about what they do but it's clear to me that there is a distinct lack of training within the NHS in how to deal with the physically/mentally disabled and those with special needs in general.

I'm hoping that this report may go some way to addressing the problem.

[haydnwalker]

I would agree there

My wife is physically disabled, but has all of her mental faculties (her issues are neurological) and there has only been 1 doctor that has even believed her for one minute! The rest thought her issues were psychological! The attitude of most medical staff it seems is "oh - there seems to be nothing wrong with you and no reason for why you can't walk - all the tests were normal, you can go home!"

Surely there is someone around that specialises in unknown/rare/new neurological conditions??

They do try, granted, and I'm thankful for the help we have received. But they need more time for training (which i know means more money spent - but isn't that what we pay taxes for?) and some of them need a bedside manner transplant

[Taf]

One nurse, after a doctor had told us that there was nothing he could do for our son due to NHS cutbacks, dismissed us with "Well his other handicaps will keep him in DLA anyway.... so what are you worried about?"

I nearly took a swing at her...

In a fortnight's time our handicapped twins see their Paeds Consulatnt (a great man) for the last time... then it'll be onto the adult list... which we have been warned means no more help... ever...

[Osem]

Originally Posted by Taf

One nurse, after a doctor had told us that there was nothing he could do for our son due to NHS cutbacks, dismissed us with "Well his other handicaps will keep him in DLA anyway.... so what are you worried about?"

I nearly took a swing at her...

In a fortnight's time our handicapped twins see their Paeds Consulatnt (a great man) for the last time... then it'll be onto the adult list... which we have been warned means no more help... ever...

Yes we worry about that eventuality Taf although we have a few years to go before we get there. I guess people like us just have to kick up enough fuss to get what our loved ones need. Sad but true....

[Taf]

Having the Paeds Consultant on our side from when the twins were about 5 really turned things around, but different departments hold different budgets and were always trying to put off appointments made by him. He fought on our side, but 2 departments Podology/Orthotics and Physiotherapy were always trying to pass us from one to the other which caused chaos and heartache.

Now the Child Mental Health people have tried to pass my daughter onto the GP, but he is having none of it as her meds can only be prescribed whilst under the care of a pyschiatrist. Or so he says.

At times I wished we were eligible for a Social Worker... that shows how desperate we became!!!

[haydnwalker]

I just think that GPs especially don't have the knowledge to treat specialist cases - though A&E depts, and even NHS Direct always say see your GP. Theres no point unless its just to prescribe some anti-biotics these days.

My Wife's Neurologist is the nicest man we've met and has even agreed to refer her to The National Hospital for Neurology in London, though we might not even get in as its so specialised and depends on funding etc. But it could be a step in the right direction.

I try my best to kick up a fuss where I feel badly treated, but they always figure out a way to stone-wall me.

We also get DLA and Incapacity Benefit, but this isn't a substitution for a fit and well loved-one!! I still remember when she was fit & well and we could run around the park playing games (and it wasn't that long ago). Now we can barely get around the supermarket without some kind of hitch!

Taf: I hope that whatever you've been told about adult NHS Care isn't quite as true as you've been made to believe and I wish you well...

[Taf]

Fingers crossed haydnwalker, but as a member of The Parents' Association, all I ever hear is of adult special needs people, and/or their carers, spending all their time chasing care/treatment they should get automatically.

And not often getting any of it...

Since my disability has been confirmed and is one that cannot be faked no matter how imaginitive you get i havn't had too bad a time with the nhs. I am fortunate to have a gp that takes an interest in genetic diseases and will fight for his patients if he believes they are truthful and reliable.

On the other side of the coin i was sent to a consultant early on when correct diagnosis would have made a big difference (he completely misdiagnosed me) and in the three appointments i had with him not once did he raise his head and look at me, he kept his eyes firmly on his golfing diary and said all three times "go away lose some weight come back in six months".

First time i went away and lost two stone only to get no more recognition off him then the first time when i attended my second appointment and when he repeated his little line i just walked out and the third time i called him a few choice names and then walkled out.

There is good and bad within the nhs as there is with everything but you do expect less of it in a profession where care is supposed to be the cornerstone.