Please, please help- DLA

[beth.stephenson2009]

Hello everyone,

 

Im seriously hoping someone can help me- as I am pulling my hair out looking for support!!!!!

 

Back in 2009, I applied for DLA- and recieve the higher rate mobility, and middle rate care. I lost this back (along with my motability vehicle in July)

 

I have right hemiplegia (cerebel palsay), which ive had since birth (due to a stroke which I had to read in some medical records over the summer - apparantly my parents telling me "ive had it since birth" is the same as telling me i had a stroke)

 

I can walk, but cannot stand very long, can not walk long distances, prone to falls- and I also struggle mentally which I think is down to it also- but I really don't know, in the 19 years of my life I have recieve little support and guidance and it is really starting to distress me!!! :frown:

 

Scope and various other places are simply just ignoring my emails.

 

Anyway....i need to know the following:

 

*Has anyone gone to an assesment for adaptions for a car, got the adaptions, then gone back to DLA, and they have then given you a motability vehicle (with adaptions). Ie- did they change their mind now that you had adaptions and they sat up and actually NOTICED.

 

*Does anyone know of any support groups in the North West area for cerebal palsay? I want to know exactly how things can affect me, and exactly what I am intitled too.

 

Anyone in the same boat as me? I hope not, and hope it never happens to you

 

Its a shame some dirty, liers have to ruin it for everyone

[CRH71]

Hello everyone,

 

Im seriously hoping someone can help me- as I am pulling my hair out looking for support!!!!!

 

Back in 2009, I applied for DLA- and recieve the higher rate mobility, and middle rate care. I lost this back (along with my motability vehicle in July)

 

I have right hemiplegia (cerebel palsay), which ive had since birth (due to a stroke which I had to read in some medical records over the summer - apparantly my parents telling me "ive had it since birth" is the same as telling me i had a stroke)

 

I can walk, but cannot stand very long, can not walk long distances, prone to falls- and I also struggle mentally which I think is down to it also- but I really don't know, in the 19 years of my life I have recieve little support and guidance and it is really starting to distress me!!! :frown:

 

Scope and various other places are simply just ignoring my emails.

 

Anyway....i need to know the following:

 

*Has anyone gone to an assesment for adaptions for a car, got the adaptions, then gone back to DLA, and they have then given you a motability vehicle (with adaptions). Ie- did they change their mind now that you had adaptions and they sat up and actually NOTICED.

 

*Does anyone know of any support groups in the North West area for cerebal palsay? I want to know exactly how things can affect me, and exactly what I am intitled too.

 

Anyone in the same boat as me? I hope not, and hope it never happens to you

 

Its a shame some dirty, liers have to ruin it for everyone

 

My word, a fellow hemiplegic!

 

Well, it's not me, it's my missus that has the hemiplegia - again, like you, from birth and, also like you, we're currently battling the DWP - she didn't get MRC though, they only assessed her for LRC....

 

Personally, SCOPE wasn't a lot of help - they are very much more for the cerebal palsic person - whilst they DO understand CP, what they don't understand is the consequence of that CP - the hemiplegia. We found that an organisation called HEMIHELP was able to give some more information, but even they weren't the "fount of all knowledge" that we were looking for.

 

Don't, whatever you do, let your doctor fob you off that it's "hemiparesis" - we had that and it's now taking an enormous amount of time to get that decision changed and the correct diagnosis given. The biggest issue is the lack of knowledge (and, of course the lack of WANTING to increase their knowledge) on the medical professionals' behalf.

 

You're lucky, in some ways, being able to walk - the OH is now in a mobility scooter for anything that involves going outside the house - indoors it is a walking stick required, plus we have a stair lift and wetroom-type shower with seat and grab rails in it.

 

I am her carer, although I do work part-time hours in the office (finishing the day at home) to ensure that I can give her enough supervision and support without her being on her own all day (she stays in her chair playing computer games whilst I'm at the office to avoid the risk of falls - if she fell over indoors and banged her head on a door frame/wall/floor/door the consequences could be very serious indeed).

 

If you want to talk further, I'm happy for this to be over PM if you wish - I'm happy to offer you some support and understanding of your condition and what might happen in the future - up to you. I've found plenty of information, one way or the other, on the web, but have also sifted through most of it to ensure that it's relevant. Hemiplegia/CP are understood far more "over the water" than they are in this country but you need to 'filter out' the "ambulance chasing" parts of these sites - in a lot of American cases, CP is caused by medical negligence at the point of birth but in this country that's rare - it's normally something happening "in the womb" that causes it.

 

You state that you are "right hemiplegic" - by that do you mean that your right side is affected (thus making the area of damage in your brain is the left hemisphere) or that your right hemisphere is affected (i.e the left side of your body is affected)?

 

Oh, and by the way - my OH turns 40 next year, so long-term prognosis with hemiplegia isn't the dire situation that "pure" CP can be.

 

CP is a consequence of the stroke and the hemiplegia is a consequence of the CP.

 

Why did you lose your DLA and the car? First things first, you should be appealing that decision, right now. Take it to a tribunal if needs be. Your condition is permanent, and you easily fit the eligibility criteria of 3/6 months. My OH was awarded DLA, indefinitely, in 1995!

 

Going forwards, you could, with the right support from your partner, lead a fairly "normal" life - albeit restricted by the mobility aspect and the care needs that will generate, but there's nothing to stop you having children in the future (it's not hereditary) and leading a fairly independent life.

Edited October 24, 2011 by CRH71
Missed one of the OP's questions!

[beth.stephenson2009]

My word, a fellow hemiplegic!

 

Well, it's not me, it's my missus that has the hemiplegia - again, like you, from birth and, also like you, we're currently battling the DWP - she didn't get MRC though, they only assessed her for LRC....

 

Personally, SCOPE wasn't a lot of help - they are very much more for the cerebal palsic person - whilst they DO understand CP, what they don't understand is the consequence of that CP - the hemiplegia. We found that an organisation called HEMIHELP was able to give some more information, but even they weren't the "fount of all knowledge" that we were looking for.

 

Don't, whatever you do, let your doctor fob you off that it's "hemiparesis" - we had that and it's now taking an enormous amount of time to get that decision changed and the correct diagnosis given. The biggest issue is the lack of knowledge (and, of course the lack of WANTING to increase their knowledge) on the medical professionals' behalf.

 

You're lucky, in some ways, being able to walk - the OH is now in a mobility scooter for anything that involves going outside the house - indoors it is a walking stick required, plus we have a stair lift and wetroom-type shower with seat and grab rails in it.

 

I am her carer, although I do work part-time hours in the office (finishing the day at home) to ensure that I can give her enough supervision and support without her being on her own all day (she stays in her chair playing computer games whilst I'm at the office to avoid the risk of falls - if she fell over indoors and banged her head on a door frame/wall/floor/door the consequences could be very serious indeed).

 

If you want to talk further, I'm happy for this to be over PM if you wish - I'm happy to offer you some support and understanding of your condition and what might happen in the future - up to you. I've found plenty of information, one way or the other, on the web, but have also sifted through most of it to ensure that it's relevant. Hemiplegia/CP are understood far more "over the water" than they are in this country but you need to 'filter out' the "ambulance chasing" parts of these sites - in a lot of American cases, CP is caused by medical negligence at the point of birth but in this country that's rare - it's normally something happening "in the womb" that causes it.

 

You state that you are "right hemiplegic" - by that do you mean that your right side is affected (thus making the area of damage in your brain is the left hemisphere) or that your right hemisphere is affected (i.e the left side of your body is affected)?

 

Oh, and by the way - my OH turns 40 next year, so long-term prognosis with hemiplegia isn't the dire situation that "pure" CP can be.

 

CP is a consequence of the stroke and the hemiplegia is a consequence of the CP.

 

Would be great to have a futher chat with you- not sure how PM works on here so if you send me a message I will work out how to reply! Thank you!

[Nystagmite]

Your condition is permanent, and you easily fit the eligibility criteria of 3/6 months.

 

I know someone with CP. Many years ago when she was a teenager, she was turned down for DLA. The reason being it won't last the 6 months... Funny how no-one else has heard of this "cure". She does receive DLA now though.

 

OP - have you tried contact a family? They do have links to organisations. Or maybe the local council can help you?