# Direct payments are being cut



## Guest (May 20, 2013)

Meaning carer has to finish. I know she is a pain and I need a better one but they don't have to pull an evil stunt like this. she's got 2 weeks left til she finishes. So they only wanted to do that yearly assessment so they can cut my direct payments. This was their evil plan all along. They reckon I don't need a carer. We say they are wrong. I do need a carer whether they like it or not, evil people. Now we have to tell her tomorrow when she picks me up to go to Alton towers.


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## harley bear (Feb 20, 2010)

Well they obviously dont think you need the level of care you think you do.


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## fierceabby (May 16, 2011)

danielled said:


> Meaning carer has to finish. I know she is a pain and I need a better one but they don't have to pull an evil stunt like this. she's got 2 weeks left til she finishes. So they only wanted to do that yearly assessment so they can cut my direct payments. This was their evil plan all along. They reckon I don't need a carer. We say they are wrong. I do need a carer whether they like it or not, evil people. Now we have to tell her tomorrow when she picks me up to go to Alton towers.


Is there an appeal system or an advocacy service near you that can help with appealing or finding alternative arrangements?


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## Grace_Lily (Nov 28, 2010)

Sorry to hear you are in this situation. Don't quite understand how the payments will affect your carer but if you are losing support you believe you need I'd recommend you contact PALS.


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## 1290423 (Aug 11, 2011)

danielled said:


> Meaning carer has to finish. I know she is a pain and I need a better one but they don't have to pull an evil stunt like this. she's got 2 weeks left til she finishes. So they only wanted to do that yearly assessment so they can cut my direct payments. This was their evil plan all along. They reckon I don't need a carer. We say they are wrong. I do need a carer whether they like it or not, evil people. Now we have to tell her tomorrow when she picks me up to go to Alton towers.


Sorry to hear that Dan, but the fact is that even really, really disabled people are losing benefits and some are being forced to go back to work, even those without legs , I know many of these people want to and do work anyway but Think Dan maybe we all have to look on the bright side of life and be thankful for what we have.


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## 1290423 (Aug 11, 2011)

Grace_Lily said:


> Sorry to hear you are in this situation. Don't quite understand how the payments will affect your carer but if you are losing support you believe you need I'd recommend you contact PALS.


I thought pals were a mediation service that worked between the patient and the hospital/dentist don't know a lot about them but would be interested in learning more


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## Guest (May 20, 2013)

From what I gather we have direct payments to pay the carer. No direct payments no carer.


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## Guest (May 20, 2013)

fierceabby said:


> Is there an appeal system or an advocacy service near you that can help with appealing or finding alternative arrangements?


There is and think mum is going to appeal against this but we appealed against something else and nothing happened, we got nowhere.


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## Kitty_pig (Apr 9, 2011)

harley bear said:


> Well they obviously dont think you need the level of care you think you do.


Pretty much this unfortunately


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## Guest (May 20, 2013)

A scenario. I'm being weaned off my epilepsy meds. I'm out say with Buddy sometimes walk him with somebody sometimes my carer. I have a tonic clonic/grand mal seizure nobody about but Buddy there, one person comes along who hasn't a clue what todo and hasn't got their phone with them. My carer has done epilepsy training so she says, if I had a seizure when I came off it she won't be there. What would happen. No carer there to put me in recovery position and get help. Nobody around apart from someone who doesn't know what to do and stands there looking. Just a scenario for you.


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## Pointermum (Jul 2, 2010)

danielled said:


> A scenario. I'm being weaned off my epilepsy meds. I'm out say with Buddy sometimes walk him with somebody sometimes my carer. I have a tonic clonic/grand mal seizure nobody about but Buddy there, one person comes along who hasn't a clue what todo and hasn't got their phone with them. My carer has done epilepsy training so she says, if I had a seizure when I came off it she won't be there. What would happen. No carer there to put me in recovery position and get help. Nobody around apart from someone who doesn't know what to do and stands there looking. Just a scenario for you.


There are hundreds of thousands of people in the UK (600,000 1 in every 103 people) with epilepsy , do you think the government could afford for each one of those people to have a shadow 24/7


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## Supasilvfoxy (Apr 6, 2013)

danielled said:


> A scenario. I'm being weaned off my epilepsy meds. I'm out say with Buddy sometimes walk him with somebody sometimes my carer. I have a tonic clonic/grand mal seizure nobody about but Buddy there, one person comes along who hasn't a clue what todo and hasn't got their phone with them. My carer has done epilepsy training so she says, if I had a seizure when I came off it she won't be there. What would happen. No carer there to put me in recovery position and get help. Nobody around apart from someone who doesn't know what to do and stands there looking. Just a scenario for you.


I'm fairly new to Petforums so I don't know your history at all Danielled, but reading your problem, puts me in mind of a charity that I used to help out in a very minor way way back in the 1990's. It is called Support Dogs - they train dogs and their owners to recognize when their owner is going to have a siezure - this is the link Seizure Alert Programme. I don't know if you have heard of them but it might be a positive step you can take, now you are losing your benefits for a carer. It might be worth a look if nothing else.


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## Guest (May 20, 2013)

Pointermum said:


> There are hundreds of thousands of people in the UK (600,000 1 in every 103 people) with epilepsy , do you think the government could afford for each one of those people to have a shadow 24/7


We've always had a problem with direct payments. I don't have her every day as it is. Just Tuesday and Thursday. They have played silly devils with u's for a while. Mum even said she'll take it to court if she has too. I need the support.


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## Guest (May 20, 2013)

Supasilvfoxy said:


> I'm fairly new to Petforums so I don't know your history at all Danielled, but reading your problem, puts me in mind of a charity that I used to help out in a very minor way way back in the 1990's. It is called Support Dogs - they train dogs and their owners to recognize when their owner is going to have a siezure - this is the link Seizure Alert Programme. I don't know if you have heard of them but it might be a positive step you can take, now you are losing your benefits for a carer. It might be worth a look if nothing else.


I somehow missed this. I have a dog, a 9 and half month old westie called Buddy but he isn't a seizure alert dog. He is a pet dog, mum got bought him for me, she had promised me a dog after the health problems I'd had with endometriosis and a pesky gallbladder that has been removed.


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## cheekyscrip (Feb 8, 2010)

Epilepsy is a serious problem....can you have a carer coming to go out with you once or twice a week?
All really depends how frequent seizures are and how well your meds control them....
Each case is different....
I had a student who often came with bruises and cuts...when I was taking them for a weekend workshop she asked me if I willtake her ..as she has epilepsy..
I said that if she dares to risk my First Aid skills I dare to have her,,,
She was ok...
She graduated and went to teach in special school...
Saying that: her seizures happened few times a week and she often felt it coming..yet sometimes she was caught unaware ; therefore the cuts and bruises...
I think she was very, very brave..one of the bravest people I ever met...


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## Lavenderb (Jan 27, 2009)

If you are being weaned off your epilepsy meds does that mean your epilepsy might have gone Dani? 
I know people with epilepsy who drive cars on their own, so it depends how severe your condition is.


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## Guest (May 20, 2013)

cheekyscrip said:


> Epilepsy is a serious problem....can you have a carer coming to go out with you once or twice a week?
> All really depends how frequent seizures are and how well your meds control them....
> Each case is different....
> I had a student who often came with bruises and cuts...when I was taking them for a weekend workshop she asked me if I willtake her ..as she has epilepsy..
> ...


Without my medication I'd be having seizures at least once a month always the same time of the month. She is going out with me Tuesday and Thursday's but that's exactly what they are stopping.


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## gorgeous (Jan 14, 2009)

danielled said:


> Without my medication I'd be having seizures at least once a month always the same time of the month. She is going out with me Tuesday and Thursday's but that's exactly what they are stopping.


Can I ask Danielle how you cope on the days you dont have your carer?


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## Guest (May 20, 2013)

Lavenderb said:


> If you are being weaned off your epilepsy meds does that mean your epilepsy might have gone Dani?
> I know people with epilepsy who drive cars on their own, so it depends how severe your condition is.


They are weaning me off it to find out if I still have epilepsy. After going so long without seizures on meds they wean you off provided you don't drive which I can't due to my visual impairment. I come off it completely in September when I see my eurologist.


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## cinnamontoast (Oct 24, 2010)

When was your last seizure?

It's difficult to understand that you _might_ have a seizure so you need a carer twice a week. A person with heart problems _might_ have a cardiac, but they don't have a carer. I have a blood clot so _might_ have a stroke. Not being nasty, just trying to understand. A friend has grand mal epilepsy and has never had a carer.


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## Guest (May 20, 2013)

gorgeous said:


> Can I ask Danielle how you cope on the days you dont have your carer?


Sometimes my aunty will com over and help me with things. mums off work at the minute, aunty is away, I struggle a bit more than people realise. Sometimes things are moved and I trip over them. I need help making my meals depending on what the meal is. Walking Buddy is fine while I'm on my meds. Sometimes if mum is working she'll make me sandwiches or something. I can't go out shopping or to the park and places like that on my own.


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## cinnamontoast (Oct 24, 2010)

But is that more to do with the visual impairment? Have you got a Braille type keyboard? How can you walk the dog but not make a sandwich?


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## nutty (Feb 17, 2013)

Grace_Lily said:


> Sorry to hear you are in this situation. Don't quite understand how the payments will affect your carer but if you are losing support you believe you need I'd recommend you contact PALS.


PALS is actually an NHS organisation, so that isnt the place to go.


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## Supasilvfoxy (Apr 6, 2013)

danielled said:


> I somehow missed this. I have a dog, a 9 and half month old westie called Buddy but he isn't a seizure alert dog. He is a pet dog, mum got bought him for me, she had promised me a dog after the health problems I'd had with endometriosis and a pesky gallbladder that has been removed.


Ah! - you do have to qualify for a Seizure Alert Dog, and their qualification criteria are pretty strict. They don't train a persons pet dog though and you do have to be over 18 is one of the rules.

Sorry about your other health problems too, life can be a bit demanding for some of us.

I hope you get things sorted though, perhaps when you are over 18 you could look into a Seizure Alert Dog, if your epilepsy problems dont get solved.


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## harley bear (Feb 20, 2010)

danielled said:


> A scenario. I'm being weaned off my epilepsy meds. I'm out say with Buddy sometimes walk him with somebody sometimes my carer. I have a tonic clonic/grand mal seizure nobody about but Buddy there, one person comes along who hasn't a clue what todo and hasn't got their phone with them. My carer has done epilepsy training so she says, if I had a seizure when I came off it she won't be there. What would happen. No carer there to put me in recovery position and get help. Nobody around apart from someone who doesn't know what to do and stands there looking. Just a scenario for you.


Im sorry but epilepsy is no grounds for a carer! My best friend has suffered all her life with epilepsy, she has a full time job, car etc etc etc and shick horror i leave my kids alone with her 

If you are being weaned OFF the epilepsy meds then thats even more reason why a carer should NOT be funded.


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## gorgeous (Jan 14, 2009)

danielled said:


> Sometimes my aunty will com over and help me with things. mums off work at the minute, aunty is away, I struggle a bit more than people realise. Sometimes things are moved and I trip over them. I need help making my meals depending on what the meal is. Walking Buddy is fine while I'm on my meds. Sometimes if mum is working she'll make me sandwiches or something. I can't go out shopping or to the park and places like that on my own.


I see. I assume you receive DLA? If you receive middle or higher rate then your Mum or Aunt (if they dont already) could claim Carers Allowance. This could be used to perhaps pay for someone to help you a couple of times a week?


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## 1290423 (Aug 11, 2011)

danielled said:


> Without my medication I'd be having seizures at least once a month always the same time of the month. She is going out with me Tuesday and Thursday's but that's exactly what they are stopping.


So if you know when you are going to have a seizure Dan then can't your mum arrange for someone to be with you at that time,
Seems an awful lot of expensive carer time tied up for something that may never happen

My friend is very very sick with her heart, but she hasn't got paramedics standing by two days a week


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## Guest (May 20, 2013)

cinammontoast said:


> But is that more to do with the visual impairment? Have you got a Braille type keyboard? How can you walk the dog but not make a sandwich?


I can't read Braille. I can never butter bread without it breaking then get agitated and frustrated and usually give up. Even with the spreadable stuff. as for the dog sometimes I walk with a neighbour and his dog. Sometimes mum will come on a walk too so I'm not always walking him by myself. The not being able to go out is my visual impairments fault. Lifes not easy with 2 meters blurred tunnel vision. The keyboard on the iPad I can see as that's big, the iPhone tends to give me nightmares with it's keyboard. It's smaller. I walk Buddy up and down a few times if I'm on my own and then we get back and he's asleep after a quick drink. I sometimes have to use a magnifying glass. Mum even thinks I could have autism but I thought I'd have been told I had that years ago if I did. I know I've got a chromosome disorder but I sure as
heck haven't got autism. I accidentlly burn things in the toaster too.


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## Lavenderb (Jan 27, 2009)

Supasilvfoxy said:


> Ah! - you do have to qualify for a Seizure Alert Dog, and their qualification criteria are pretty strict. They don't train a persons pet dog though and you do have to be over 18 is one of the rules.
> 
> Sorry about your other health problems too, life can be a bit demanding for some of us.
> 
> I hope you get things sorted though, perhaps when you are over 18 you could look into a Seizure Alert Dog, if your epilepsy problems dont get solved.


I believe Danielle is around 25/26 ...am I right Dani?


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## nutty (Feb 17, 2013)

I dont know your situation exactly, so please forgive me if I get this wrong. It seems you are under 18 and the doctors are weaning you off anticonvulsant medication because they want to test whether your condition has resolved/ gone. This is an appropriate action of they consider that your condition has indeed resolved- this can be the case, and they wont know unless they at least try to reduce the medications. Additionally, the social services have considered that because of your improving condition you may not qualify for the care aspect provided. This could also be a good thing, if your condition has resolved or improved considerably. I can appreciate that the social services reducing or removing your care provision is unsettling, and perhaps even premature . Perhaps you feel frightened for the future and how you will cope. This would be very understandable. The system between NHS and social service certainly isnt a seamless one. If it were then the social services would hold off making changes until the doctors were assured that your conditon was not gong to relapse easily. I havent any pearls of wisdom or expertise to offer you, but I would just say this: Be optimistic for your future health, because your doctors clearly are. Continue being brave and getting on with your life. Not having such reliance on the carers could result in your increased confidence. Services can be reinstated, I am sure, if your condition were to relapse. It will be a testing and anxious time for you. I do see this in my patients when they are getting ready for being discharged home from hospital. I wish you the best of luck and hope you continue to be healthy.


edited to say, perhaps I have misunderstood your age. I apologise if that is he case, however, you are effectively still very youmg and too young to be resigned to accepting a situation that may no longer apply to you now .


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## Guest (May 20, 2013)

DT said:


> So if you know when you are going to have a seizure Dan then can't your mum arrange for someone to be with you at that time,
> Seems an awful lot of expensive carer time tied up for something that may never happen
> 
> My friend is very very sick with her heart, but she hasn't got paramedics standing by two days a week


We are looking into something can't remember what, if we can have it connected to my aunty's phone and I fall asleep or something it will pick it up and my aunty will be called to com over so if I have a seizure she'll know that's only for when I'm home though. That's the thing DT with this implant I've noticed my hormones have changed a bit meaning the time of month seizures occurr may change. I used to have one either when I started my monthly or finished but these monthlies are a bit wild at the minute thank you very much implant and pill.

To answer a question on this thread I know my last seizure was over 7 years ago. I' been weaned off the first time, came off my meds completely went 3 months without a seizure then in the back of the car guess what, a tonic
clonic/grand mal. I never remember what happened and always get told you
had a fit. I get a warning then 2 seconds after the warning I go into a tonic 
clonic. I only know where the seizure happened because I have heard mum talking about it.


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## newfiesmum (Apr 21, 2010)

danielled said:


> A scenario. I'm being weaned off my epilepsy meds. I'm out say with Buddy sometimes walk him with somebody sometimes my carer. I have a tonic clonic/grand mal seizure nobody about but Buddy there, one person comes along who hasn't a clue what todo and hasn't got their phone with them. My carer has done epilepsy training so she says, if I had a seizure when I came off it she won't be there. What would happen. No carer there to put me in recovery position and get help. Nobody around apart from someone who doesn't know what to do and stands there looking. Just a scenario for you.


My dear, I will never in a million years understand how they work these things out. My son has a friend who is epileptic, as well as having learning difficulties, but she has her own flat in a supported housing complex. She has a full time carer who actually lives with her since her fits got worse a couple of years ago. Perhaps it is because she lives alone whilst you, I believe, live with your mum, but it is a supported living place so she shouldn't need a carer as well.

I think it makes them feel good to decide who gets this and who doesn't - makes them feel powerful.


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## Supasilvfoxy (Apr 6, 2013)

Lavenderb said:


> I believe Danielle is around 25/26 ...am I right Dani?


That sounds promising then - she would qualify for a Seizure Alert Dog if she fulfils their other criteria, which is pretty stringent. I don't think owning a pet dog would prevent her having another, though I'm not sure about it. Would be something to ask if you were interested to go that route Danielle.


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## Goldstar (Nov 12, 2011)

Cuts are happening everywhere unfortunately, my OH works with someone who has a heart condition and was operated on not too long ago but has now been forced into a very physical job because his ESA was down to about £53 a week. He couldn't wait any longer for a less demanding job as he was falling behind with utilities.

Problem is people that aren't ill always seem to get away with everything, its people like you who then suffer.

Maybe the seizure alert dog would be worth looking into?


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## Guest (May 20, 2013)

Lavenderb said:


> I believe Danielle is around 25/26 ...am I right Dani?


Yes I'll be 27 on 22 June.

Supasilverfoxy one dogs enough for me with ho naughty Buddy is.


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## Guest (May 20, 2013)

Goldstar said:


> Cuts are happening everywhere unfortunately, my OH works with someone who has a heart condition and was operated on not too long ago but has now been forced into a very physical job because his ESA was down to about £53 a week. He couldn't wait any longer for a less demanding job as he was falling behind with utilities.
> 
> Problem is people that aren't ill always seem to get away with everything, its people like you who then suffer.
> 
> Maybe the seizure alert dog would be worth looking into?


Exactly I swear they think it's dead good to make people like me suffer. Buddy gives me the run around as it is he'd probably think a seizure alert dog was another pet dog rather than assistance dog. He thinks every dog and human I's his new best friend.


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## davidc (Dec 15, 2010)

danielled said:


> I can't read Braille. I can never butter bread without it breaking then get agitated and frustrated and usually give up. Even with the spreadable stuff. as for the dog sometimes I walk with a neighbour and his dog. Sometimes mum will come on a walk too so I'm not always walking him by myself. The not being able to go out is my visual impairments fault. Lifes not easy with 2 meters blurred tunnel vision. The keyboard on the iPad I can see as that's big, the iPhone tends to give me nightmares with it's keyboard. It's smaller. I walk Buddy up and down a few times if I'm on my own and then we get back and he's asleep after a quick drink. I sometimes have to use a magnifying glass. Mum even thinks I could have autism but I thought I'd have been told I had that years ago if I did. I know I've got a chromosome disorder but I sure as
> heck haven't got autism. I accidentlly burn things in the toaster too.


And sometimes you walk Buddy with me.

Having a carer helps Danielle a lot, I can't drive due to epilepsy but her carer can for example.


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## Guest (May 20, 2013)

davidc said:


> And sometimes you walk Buddy with me.
> 
> Having a carer helps Danielle a lot, I can't drive due to epilepsy but her carer can for example.


Yeah we go on Buddy's favourite path.

Yeah it does help me, how do they expect me to get to art, knitting and ordsall hall, by a flying saucer? A carer really does help even if she I's a pain.


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## j4nfr4n (Mar 10, 2013)

danielled said:


> Yeah we go on Buddy's favourite path.
> 
> Yeah it does help me, how do they expect me to get to art, knitting and ordsall hall, by a flying saucer? A carer really does help even if she I's a pain.


is it the epilesy or the tunnel vision that stops you getting about, my mother suffered with tunnel vision and night blindness from a small child but went out to work got married and raised 3 children. it was only when she lost her sight completely in her later years that she needed more help. could it be that you need to have more confidence to enjoy what life you have. i hope things pick up for you


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## Pixieandbow (Feb 27, 2013)

danielled said:


> I can't read Braille. I can never butter bread without it breaking then get agitated and frustrated and usually give up. Even with the spreadable stuff. as for the dog sometimes I walk with a neighbour and his dog. Sometimes mum will come on a walk too so I'm not always walking him by myself. The not being able to go out is my visual impairments fault. Lifes not easy with 2 meters blurred tunnel vision. The keyboard on the iPad I can see as that's big, the iPhone tends to give me nightmares with it's keyboard. It's smaller. I walk Buddy up and down a few times if I'm on my own and then we get back and he's asleep after a quick drink. I sometimes have to use a magnifying glass. Mum even thinks I could have autism but I thought I'd have been told I had that years ago if I did. I know I've got a chromosome disorder but I sure as
> heck haven't got autism. I accidentlly burn things in the toaster too.


I cared for a family recently. Both parents are severely visually impaired, mum wouldn't know who I was until I spoke. Her husband works full time and she is a stay at home mum with no carers and manages to get herself around and take fantastic care of her children...she was even managing her own blood pressure with a Antarctic machine for visually impaired people. Siri was the best invention as texting would be difficult because she can't even see enough to do that


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## Guest (May 20, 2013)

j4nfr4n said:


> is it the epilesy or the tunnel vision that stops you getting about, my mother suffered with tunnel vision and night blindness from a small child but went out to work got married and raised 3 children. it was only when she lost her sight completely in her later years that she needed more help. could it be that you need to have more confidence to enjoy what life you have. i hope things pick up for you


It's the blurred tunnel vision and there I's something I haven't mentioned I have to wear 2 hearing aids. Mum worries about me when roads come into the picture. I have no vision in my right eye.


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## emmaviolet (Oct 24, 2011)

Dan, can your Mum not help care for you?

If you do get DLA then that pays for your travel to the places you go, such as art etc, you can travel by taxi.

If you are not having seizures anymore and that is what the carer is used for then I do see their point and if your Mum isn't working then she could come with you to walk Buddy.


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## Pointermum (Jul 2, 2010)

cheekyscrip said:


> Epilepsy is a serious problem....can you have a carer coming to go out with you once or twice a week?
> All really depends how frequent seizures are and how well your meds control them....
> Each case is different....
> I had a student who often came with bruises and cuts...when I was taking them for a weekend workshop she asked me if I willtake her ..as she has epilepsy..
> ...


My BIL died from a epileptic fit, i still don't think that is reason for a carer and he certainly wouldn't of wanted one. Over the years he smashed himself silly, broke his jaw once hitting the curb of the pavement as he fell into a fit. Unless you have someone watching you 24/7 there is no point.


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## tinaK (Jun 12, 2010)

I'm very lucky as my direct payments have just been increased, but I need a hell of a lot of support 

The direct payments give me a quality of life I wouldn't have otherwise.


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## nutty (Feb 17, 2013)

danielled said:


> Yeah we go on Buddy's favourite path.
> 
> Yeah it does help me, how do they expect me to get to art, knitting and ordsall hall, by a flying saucer? A carer really does help even if she I's a pain.


Going to stick my neck out a little here...

A guide dog for the blind is really going to be the way forward.

My late uncle, totally blind from the age of 22, worked a very productive life, going to work on the bus with his guide dog (he had a few over the years), and held down a job at Barclays bank as a telephonist. He married and had 2 children, and took part in decorating and everything practical. He learned braille, he learned many handicraft skills, and yes, he learned to butter bread - plus there was no soft alternatives around at that time. Please dont limit your life because of your impaired vision. Look in to some supportive strategies that will help you to become more independent, because you will have a much more fulfilled life.


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## j4nfr4n (Mar 10, 2013)

nutty said:


> Going to stick my neck out a little here...
> 
> A guide dog for the blind is really going to be the way forward.
> 
> My late uncle, totally blind from the age of 22, worked a very productive life, going to work on the bus with his guide dog (he had a few over the years), and held down a job at Barclays bank as a telephonist. He married and had 2 children, and took part in decorating and everything practical. He learned braille, he learned many handicraft skills, and yes, he learned to butter bread - plus there was no soft alternatives around at that time. Please dont limit your life because of your impaired vision. Look in to some supportive strategies that will help you to become more independent, because you will have a much more fulfilled life.


my mother used to put her butter knife in a cup of hot water so as to soften the butter enabling her to spread it onto the bread.


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## Guest (May 20, 2013)

I applied for a guide dog few years back they said no. I'm not going through that again. It's not just because of my epilepsy I have a carer. Last taxi cost me £14 on the way there £15 on the way back when a few months back the same firm cost me £7. Yes I get DLA. Mums looking for her new job so once she finds a job she won't be around all day every day. As for taxis, £14 to £15 again, no thank you very much. Once I'm off the meds whose today Iwon't have a seizure at some point. The onlyreason I'm not having my seizures I's because I'm on tegretol.


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## Grace_Lily (Nov 28, 2010)

danielled said:


> From what I gather we have direct payments to pay the carer. No direct payments no carer.


Who makes the payment Danielled, do you know? Which agency does your carer work for, the NHS, social services, or do you employ her privately out of money paid to you by the job centre?



nutty said:


> PALS is actually an NHS organisation, so that isnt the place to go.


As I mentioned in my post I wasn't totally clear on the carer situation, but recommended contacting PALS as they are responsible for organising home visits in my own care plan.


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## emmaviolet (Oct 24, 2011)

The DLA is for your travel costs, so even though it may sound a lot, that is what the mobility part is for, assuming you receive that component. 

Your Mum is around at the minute, so she should be able to assist you.

I know you say who is to know if you will have another seizure, but there are some having them every week who do not enjoy the sevices of a carer with them when they go out.


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## Guest (May 20, 2013)

emmaviolet said:


> The DLA is for your travel costs, so even though it may sound a lot, that is what the mobility part is for, assuming you receive that component.
> 
> Your Mum is around at the minute, so she should be able to assist you.
> 
> I know you say who is to know if you will have another seizure, but there are some having them every week who do not enjoy the sevices of a carer with them when they go out.


Mum supports me the best she can.


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## tinaK (Jun 12, 2010)

danielled said:


> I applied for a guide dog few years back they said no. I'm not going through that again. It's not just because of my epilepsy I have a carer. Last taxi cost me £14 on the way there £15 on the way back when a few months back the same firm cost me £7. Yes I get DLA. Mums looking for her new job so once she finds a job she won't be around all day every day. As for taxis, £14 to £15 again, no thank you very much. Once I'm off the meds whose today Iwon't have a seizure at some point. The onlyreason I'm not having my seizures I's because I'm on tegretol.


But that's DLA is for.. to pay for costs occurred cos of a disability.. so that covers taxi's.

You live at home don't you? So don't have many bills, etc


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## Pixieandbow (Feb 27, 2013)

I know you think people are being harsh but there are people up and down the country that have all sorts of dangerous conditions that manage without carers.

I have brittle asthma...I could have a sudden attack tomorrow and not have time to get my inhaler, equally we could all get hit by a bus. Unfortunately funding for carers is assessed by what is actually happening every single day not what may happen at some point in the future.

You and your mum need to get some advice. Is there anyway that it would be financially viable for her to be your carer? You said she is looking for a job, how is she managing now? Also, would you be entitled to housing benefit, council tax benefit, carers allowances etc, can your mum drive and therefore get a car on motability to run you around?


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## grumpy goby (Jan 18, 2012)

I think you are looking at this the wrong way, rather than focus on the glass half empty, why not consider some positives...

The Dr think you may be able to be OK without the epilepsy Meds, if they are confident then surely thats a good thing? You may not/very rarely suffer fits again - that could be amazing for you to be med free.

You sometimes walk Buddy alone, independence is a little bit of freedom - you could become more independent as a result of this - you may find you start to enjoy the freedom.


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## ginge2804 (Nov 5, 2011)

danielled said:


> I applied for a guide dog few years back they said no. I'm not going through that again. It's not just because of my epilepsy I have a carer. Last taxi cost me £14 on the way there £15 on the way back when a few months back the same firm cost me £7. Yes I get DLA. Mums looking for her new job so once she finds a job she won't be around all day every day. As for taxis, £14 to £15 again, no thank you very much. Once I'm off the meds whose today Iwon't have a seizure at some point. The onlyreason I'm not having my seizures I's because I'm on tegretol.


Sorry, but thats what your DLA is for is it not?
It would have cost anyone else the same to get a taxi too


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## Lovehatetragedy (Jul 8, 2010)

This interested me to read. I was partially diagnosed with Multiple Sclerosis in October of last year. Partially meaning that although my tests have all come back positive I cannot be fully diagnosed and given medication to control it until everything else is ruled out although medically its been confirmed. Part of my MS means I have seizures at least twice a week when I'm going through a bad period and can often end up losing my eyesight and my arms/legs/other parts may not function correctly. Since being partially diagnosed I've had access to a fair bit of help however I've not had the privilege to be assigned a carer, instead my fantastic dad became my carer and has been looking after me day and night ever since. I lost all my independence since my seizures started, like you I cannot drive or go out by myself and I cannot do things the usual 20 year old could do, which I can understand it is very frustrating however since having my dogs I have actually began to do it a little more often. It took us 9 months to get me the help I needed such as Disability Living Allowance etc because they refused to believe I needed the help we said, until a tribunal saw me in person. Would it be possible to have your mother apply for a carers allowance in order to help you out a bit more? There are other forms of help you may be entitled to since they can't just drop you in the middle of nowhere when it comes to support.


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## noogsy (Aug 20, 2009)

having epilepsy should not have stopped you having a normal life :uni or college,married,kids,job,own house im baffled.
there are one or two things you cant do????
my gran was epileptic she wore a helmet as a older person.she owned and ran a farm her husband died when she was a youngish woman she was left to bring up 5 daughters on her own...2 of her children were epileptic. i have cousins with epilepsy,its in our family.
they are all just normalish.....
gran never sat about waiting to have a fit...she lived a full life and never grumbled, winged or god forbid had a carer....


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## shetlandlover (Dec 6, 2011)

My cousin has epilepsy and other brain conditions due to dying many times at birth. 

He has fits at least 3 times a day, every day. 

He however doesn't get a carer, he gets DLA and he's able to go to college, he does fit at college however his teacher and friends in the class look out for him. There are previsions made for if he has a fit at college.

I don't think it can put your life on hold, well it can, if you let it. 

There are cuts being made all over the benefits system, sadly many people just have to make do with what they have been given.


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## Lovehatetragedy (Jul 8, 2010)

shetlandlover said:


> My cousin has epilepsy and other brain conditions due to dying many times at birth.
> 
> He has fits at least 3 times a day, every day.
> 
> ...


I completely agree, I was told to change my plans of being a Veterinary Nurse because of how my illness limits me but I refuse to let it win. If you give up your freedom what else do you have left in the end?


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## Guest (May 20, 2013)

If that's what DLA I's for then they forgot to tell us something when we got it. I had topay for the very expensive taxis myself with my money. Mum phoned the firm and even told them we'll never use them again. I heard mum on the phone to direct payment people as I was getting ready to take Buddy out for a walk. Her words and I'll agree with her this is appalling. they can applaud their bad idea now but try applauding when/if mum ends up taking this to court. We know what support I need and how much I need. At the art course I need support so in 2 weeks I'm snookered there.


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## Pointermum (Jul 2, 2010)

danielled said:


> If that's what DLA I's for then they forgot to tell us something when we got it.* I had topay for the very expensive taxis myself with my money*. Mum phoned the firm and even told them we'll never use them again. I heard mum on the phone to direct payment people as I was getting ready to take Buddy out for a walk. Her words and I'll agree with her this is appalling. they can applaud their bad idea now but try applauding when/if mum ends up taking this to court. We know what support I need and how much I need. At the *art course *I need support so in 2 weeks I'm snookered there.


Your money from who or where 

Your worried about the art course you won't be able to do ..... people are starving because of the cuts being made.


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## ClaireLouise (Oct 11, 2009)

Grace_Lily said:


> Sorry to hear you are in this situation. Don't quite understand how the payments will affect your carer but if you are losing support you believe you need I'd recommend you contact PALS.


PALS cant help they are patient advice and liaison and work in health care . Direct payments are social care unless funded by continuing care but I don't think they do direct payment. It's the council you need to complain to as its social care not health


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## cheekyscrip (Feb 8, 2010)

My MinL is 85, last year she broke her pelvis and her femur, she has advanced angina too..and few other problems..she cannot leave her house without assistance and needs lots of help with daily living...
Does she have a carer?...


No!

She pays her cleaner from her pension and family helps all the time..though all are working..


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## Goldstar (Nov 12, 2011)

As someone else has said, try to concentrate on the things you can do instead of what you can't. You'll be surprised at how much confidence it'll give you.


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## cinnamontoast (Oct 24, 2010)

I'm just not getting this. Your mum's taking who to court, given this is the government changing the way benefits work? Do you think it will get to court? If so, who will pay your massive costs if you lose? Do you really think this is a good route forward? 

So your art course is snookered? So was my desire to be a pilot when my eyes went myopic. Tough on me. 

Every time I've been to the hospital in the past two months, I've needed my OH to drive me there. And I've paid every parking charge, so up to 3 x £4 a time. When the OH was at work, I was stuck at home, again, tough. I physically can't get into or out of a normal car. 

I don't understand that you say your last seizure was 7 years ago yet you have a carer  

Forgive me for being harsh, but you're very pessimistic. Get off the pill/implant if they're making you hormonal. I believe that the extra hormones may be making you fluctuate and be more depressive than you should be. See your GP and sort this out, many of us women have horrendous periods and pmt. That can't be allowed to dictate anything in your life. 

I work with physically impaired children, some of whom have life limiting conditions. 2 have died recently. However, the ones we have come so they can be in a mainstream school, they embrace the time they have, they aren't able to toilet themselves or get from one class to another without physical support. 

Point being, count your blessings, don't be afraid that things are changing, get out when you can and do what you can, don't be reliant on medication if your doctor believes you can live without. You sound scared but don't be, you have support from your family and the doctors under whose care you are, you should be leading a more fulfilling life, but from my POV as someone who knows sod all about you, you seem as though you would benefit from some counselling for depression. I'm sorry if I'm way off the mark here.


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## cheekyscrip (Feb 8, 2010)

I know some amazing people who could claim benefits...but they do not want to...they fight to be able to work...
I know those who worked with cancer, with polio, with epilepsy, with MS...who were carried by students where building had no ramps!!!
My fried is legally blind, she graduated with firsts...married , had a child, works with blind children...
She went sailing with us and mountain walking...
another friend was an architect and lost his sight...he qualified as a teacher..
Many people on this forum cope with various conditions...and make most of their life...
I know those who even hid their diagnosis deep in the cupboard and just soldier on...

I know it is scary to face the world again as apossibly nearly OK person...I see why...but you are still young and I hope you are getting better...

Best wishes Dan...


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## Guest (May 20, 2013)

Pointermum said:


> Your money from who or where
> 
> Your worried about the art course you won't be able to do ..... people are starving because of the cuts being made.


I drew the money out of my bank but when I got there I had to borrow money as the taxi there cleared my purse.

There are buildings as well that are being slashed due to the cuts, one of which we are worried I's gradually being closed for good as we have had no assurance from the council I isn't the beginning of the end, yes I'm referring to the one and only, the very place I volunteer at once a month ordsall hall so it's sadly people and buildings affected. That's another thread though. If these cuts hadn't showed up we wouldn't be in this mess.


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## Grace_Lily (Nov 28, 2010)

clairelouise said:


> i don't know if pals can help they are patient advice and liaison and work in health care i think. Direct payments are social care unless funded by continuing care but i don't think they do direct payment. It's the council you need to complain to as its social care not health





grace_lily said:


> who makes the payment danielled, do you know? Which agency does your carer work for, the nhs, social services, or do you employ her privately out of money paid to you by the job centre?
> 
> *as i mentioned in my post i wasn't totally clear on the carer situation, but recommended contacting pals as they are responsible for organising home visits in my own care plan.*




..............


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## Guest (May 20, 2013)

Goldstar said:


> As someone else has said, try to concentrate on the things you can do instead of what you can't. You'll be surprised at how much confidence it'll give you.


I'll try but we are finding that hard at the minute. Just watch, I'll come back from a day at Alton towers tomorrow and everything will be alright again lol.


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## Guest (May 20, 2013)

Cinamonontoast if I get off the implant I'll get my endometriosis attacks. The pill I'm on to help try and stop my monthlies.


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## tinaK (Jun 12, 2010)

is it safe to go on the rides at Alton Towers? It might bring on a seizure ?


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## ClaireLouise (Oct 11, 2009)

danielled said:


> I drew the money out of my bank but when I got there I had to borrow money as the taxi there cleared my purse.
> 
> There are buildings as well that are being slashed due to the cuts, one of which we are worried I's gradually being closed for good as we have had no assurance from the council I isn't the beginning of the end, yes I'm referring to the one and only, the very place I volunteer at once a month ordsall hall so it's sadly people and buildings affected. That's another thread though. If these cuts hadn't showed up we wouldn't be in this mess.


If the cuts don't happen we would all be in an even bigger mess! The country would be bankrupt.

Dan, I really don't think things are as bad as you think they are. You will be fine. To me someone who needs carers as a necessity have they 3/4 times a day for all activities of daily living. It's sounds like it's more social needs for you so maybe you should look at volunteer scheme to cover that gap but im sure you will get by with out a trained carer.


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## Lovehatetragedy (Jul 8, 2010)

cloversmum said:


> is it safe to go on the rides at Alton Towers? It might bring on a seizure ?


Thats what I was wondering.. I've been banned from going on rides since my seizures started


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## Goldstar (Nov 12, 2011)

danielled said:


> I'll try but we are finding that hard at the minute. Just watch, I'll come back from a day at Alton towers tomorrow and everything will be alright again lol.


I hope things do turn out good for you  x


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## Guest (May 20, 2013)

cloversmum said:


> is it safe to go on the rides at Alton Towers? It might bring on a seizure ?


Been on them loads of times never had a seizure. My seizures aren't triggered by rides thankfully. That's where I'm lucky, rides have never triggered a seizure. Whil I'm on tegretol I'm safe. While I'm on tegretol I won't have a seizure. Just to add I'd had carers before my last seizure. Mums idea I wasn't keen at first but soon realised how much more confident I felt, plus I'm quite isolated here. Honestly with a carer I feel much more confident thinking about it.


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## Guest (May 20, 2013)

Lovehatetragedy said:


> Thats what I was wondering.. I've been banned from going on rides since my seizures started


Rides have never triggered a seizure with me been on loads there and never had one while on rides, not even on nemesis, air, rita or oblivion.


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## tinaK (Jun 12, 2010)

My direct payments go to pay a support worker,she comes in 3 times a week for 2 hours a time,

But she goes to all appointments with me, she helps me cook and do daily living stuff not go to Alton Towers


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## Summersky (Aug 11, 2012)

You obviously have a few disabilities already indentified, and perhaps the possibility of autism needs to be investigated more. 

That can give you a very egocentric view of life, and can impact greatly on socail interaction and everyday life. 

You are lucky to be holding on to your DLA at the moment - so do be grateful for that, and aware that things are changing, as the benefits switch over to PIP. Many poeple are goig to lose benefits or have them reduced.

Can I sugggest that you and your Mum make an appointment with your local Disability Advice Bureau?

They will know what you are entitled to, and will help you with any claim. They know exactly what to put down.

They will also know of other local schemes that might help you, such as volunteer befriending schems, to help you get out and about.

Alternatively, speak to someone at your local CAB - they may be able to point you in the right direction, if you can't find a local DAB.


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## Pixieandbow (Feb 27, 2013)

Ok, and you won't like me for this, but this is reality.

My elderly uncle who has had two heart attacks is looking after his elderly, bed ridden wife. The ONLY support he was offered was help to get her to bed...she's bed ridden!!! So he washes her, changes incontinence pads, moves her to avoid bed sores, feeds her...he isn't entitled to a carer but she needs full on nursing care. I'm sorry you feel hard done by but every sensible suggestion that is made you don't want to even think about. The reality is that you are able to do more than you think you can.


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## LostGirl (Jan 16, 2009)

instead of saying "I cant/I wont" say I will or i'll try 

you're cutting off your nose to spite your face tbh with it all. You wont apply for this because of this or not well then you cant really complain NOTHING just falls on your lap sadly


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## cinnamontoast (Oct 24, 2010)

danielled said:


> Cinamonontoast if I get off the implant I'll get my endometriosis attacks. The pill I'm on to help try and stop my monthlies.


The pill ought not to stop your periods, it gives you a fake period if you stop every 21 days, making your body think you're pregnant. Implant plus pill is bonkers. Get off the implant if it's making you odd and look at all the dozens of other options out there.



Pixieandbow said:


> Ok, and you won't like me for this, but this is reality.
> 
> My elderly uncle who has had two heart attacks is looking after his elderly, bed ridden wife. The ONLY support he was offered was help to get her to bed...she's bed ridden!!! So he washes her, changes incontinence pads, moves her to avoid bed sores, feeds her...he isn't entitled to a carer but she needs full on nursing care. I'm sorry you feel hard done by but every sensible suggestion that is made you don't want to even think about. The reality is that you are able to do more than you think you can.


I'm sure we can all come up with stories, like my MIL on her own coping with my wheelchair bound FIL who weighed about three times what she did and not having a carer. She is now 83 and so ill she goes to hospital every few weeks being unable to breathe. The hospital refuse to give her oxygen which would negate the need for her going to hospital. She has a key on a string to throw to the paramedics from the bedroom for when she can't manage the stairs. She doesn't have a carer 'in case' she collapses.

I hope you gain some independence, Danielle, it sounds like you could definitely make more of your life. Get angry when you butter bread?! Me too, I use terrible language when it tears!


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## Guest (May 20, 2013)

LostGirl said:


> instead of saying "I cant/I wont" say I will or i'll try
> 
> you're cutting off your nose to spite your face tbh with it all. You wont apply for this because of this or not well then you cant really complain NOTHING just falls on your lap sadly


Tomorrows a new day so come tomorrow I'll try and think positive. I know mum she tends to say thing in the heat of the moment.


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## harley bear (Feb 20, 2010)

danielled said:


> If that's what DLA I's for then they forgot to tell us something when we got it. I had topay for the very expensive taxis myself with my money. Mum phoned the firm and even told them we'll never use them again. I heard mum on the phone to direct payment people as I was getting ready to take Buddy out for a walk. Her words and I'll agree with her this is appalling. they can applaud their bad idea now but try applauding when/if mum ends up taking this to court. We know what support I need and how much I need. At the art course I need support so in 2 weeks I'm snookered there.


DLA is a higher rate to jsa so it can cover travel expenses, if you havent got a disability car then they will give you extra for travel.

As carers seen to be given so willy nilly.....Since my op i have been basically falling asleep at the drop of a hat like im doped up on drugs all the time, im not sleeping and i have 3 kids to care for alone all day...do i qualify? woe is me.


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## emmaviolet (Oct 24, 2011)

danielled said:


> I drew the money out of my bank but when I got there I had to borrow money as the taxi there cleared my purse.


I think what PM means is your money from the bank is your DLA money. It is used for the added costs of being disabled and one component is mobility and that money should be used by you for transport such as taxis and trains or bus.

A carer really shouldn't be responsible for your trip to Alton Towers IMO, they should help with basic aspects of living, as others have said, there is little help for the bed ridden and those who have daily seizures.


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## 1290423 (Aug 11, 2011)

danielled said:


> I can't read Braille. I can never butter bread without it breaking then get agitated and frustrated and usually give up. Even with the spreadable stuff. as for the dog sometimes I walk with a neighbour and his dog. Sometimes mum will come on a walk too so I'm not always walking him by myself. The not being able to go out is my visual impairments fault. Lifes not easy with 2 meters blurred tunnel vision. The keyboard on the iPad I can see as that's big, the iPhone tends to give me nightmares with it's keyboard. It's smaller. I walk Buddy up and down a few times if I'm on my own and then we get back and he's asleep after a quick drink. I sometimes have to use a magnifying glass. Mum even thinks I could have autism but I thought I'd have been told I had that years ago if I did. I know I've got a chromosome disorder but I sure as
> heck haven't got autism. I accidentlly burn things in the toaster too.


There are many that cant afford both an iphone AND an ipad - I know benefits in yoru case Dan arnt means tested, but perhaps you mum could pay herself for someone to be with you at least on day a week,


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## Guest (May 20, 2013)

emmaviolet said:


> I think what PM means is your money from the bank is your DLA money. It is used for the added costs of being disabled and one component is mobility and that money should be used by you for transport such as taxis and trains or bus.
> 
> A carer really shouldn't be responsible for your trip to Alton Towers IMO, they should help with basic aspects of living, as others have said, there is little help for the bed ridden and those who have daily seizures.


These theme park trips are something she loves doing and I enjoy too. I don't go to theme parks often and neither does she. I keep saying to her if you don't want to do trips to theme parks that's fine but she just keeps say Dan I love going to theme parks. If she enjoys it then I'm happy.


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## Lavenderb (Jan 27, 2009)

harley bear said:


> DLA is a higher rate to jsa so it can cover travel expenses, if you havent got a disability car then they will give you extra for travel.
> 
> As carers seen to be given so willy nilly.....Since my op i have been basically falling asleep at the drop of a hat like im doped up on drugs all the time, im not sleeping and i have 3 kids to care for alone all day...do i qualify? woe is me.


Get yourself down the doctors then....kids need a well mum  make an appointment tomorrow woman!


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## emmaviolet (Oct 24, 2011)

danielled said:


> These theme park trips are something she loves doing and I enjoy too. I don't go to theme parks often and neither does she. I keep saying to her if you don't want to do trips to theme parks that's fine but she just keeps say Dan I love going to theme parks. If she enjoys it then I'm happy.


It's good you both enjoy them, but people cannot get funding for care when they cannot get out of bed or are suffering a great deal, so I can see why they are not giving you extra funding, as your DLA could pay for someone to come with you to these places anyway.


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## harley bear (Feb 20, 2010)

Lavenderb said:


> Get yourself down the doctors then....kids need a well mum  make an appointment tomorrow woman!


Yep, ive been trying to get an appt for a while


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## tinaK (Jun 12, 2010)

danielled said:


> These theme park trips are something she loves doing and I enjoy too. I don't go to theme parks often and neither does she. I keep saying to her if you don't want to do trips to theme parks that's fine but she just keeps say Dan I love going to theme parks. If she enjoys it then I'm happy.


I'm astonished your getting funding to go to a theme park .

I really thought direct payments were to help you come with daily living, not a fun day out..

I might ask my support worker to take me to Alton Towers tomorrow


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## 1290423 (Aug 11, 2011)

Lavenderb said:


> Get yourself down the doctors then....kids need a well mum  make an appointment tomorrow woman!


I'll second that HarleyBear, I know you're a tough old boot but !!!!!!!! sometimes you have to listen to us wise ones


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## Lavenderb (Jan 27, 2009)

danielled said:


> These theme park trips are something she loves doing and I enjoy too. I don't go to theme parks often and neither does she. I keep saying to her if you don't want to do trips to theme parks that's fine but she just keeps say Dan I love going to theme parks. If she enjoys it then I'm happy.


I tell you what Dani, you are much braver than me. I would have to be unconscious before you'd get me on those rides :lol:


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## nutty (Feb 17, 2013)

danielled said:


> These theme park trips are something she loves doing and I enjoy too. I don't go to theme parks often and neither does she. I keep saying to her if you don't want to do trips to theme parks that's fine but she just keeps say Dan I love going to theme parks. If she enjoys it then I'm happy.


I'm frankly not surprised that your paid carer likes going to Alton Towers!


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## harley bear (Feb 20, 2010)

DT said:


> I'll second that HarleyBear, I know you're a tough old boot but !!!!!!!! sometimes you have to listen to us wise ones


Hahaha Old boot :lol:


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## 1290423 (Aug 11, 2011)

cloversmum said:


> I'm astonished your getting funding to go to a theme park .
> 
> I really thought direct payments were to help you come with daily living, not a fun day out..
> 
> I might ask my support worker to take me to Alton Towers tomorrow


Your not far from me right !
A couple of years ago my friend and I booked a day at thorsby park hotel spa. 
We got talking to a couple of 'carers' there that had taken for two severely disabled young adults there for the day, and by severely disabled I mean severely , they were both wearing nappies. Although the carers were nice in themselves is was clearly apparent that they were there for there own benefit and I actually felt sorry for the disabled girls sat sweltering in the sauna. We talked about payment, add up their wages, fuel/travel and payment to the spa that day maybe cost in the region of £800


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## tinaK (Jun 12, 2010)

DT said:


> Your not far from me right !
> £800


You're offering to take me?  I hate crowds and panic lol.


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## tinktinktinkerbell (Nov 15, 2008)

She's not even good looking, she's just full of make up and fake tan, she should get a grip


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## tincan (Aug 30, 2012)

tinktinktinkerbell said:


> She's not even good looking, she's just full of make up and fake tan, she should get a grip


Wrong thread Tinks


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## tinktinktinkerbell (Nov 15, 2008)

tincan said:


> Wrong thread Tinks


Sshhhh :lol:

Anyway, on topic *cough*

If you have not had a fit for 7 years why do you need a carer?


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## LolaBoo (May 31, 2011)

You havnt had a fit for 7 yrs but still need a carer, and this carer it seems is paid to take you to theme parks, im sorry but bloody hell there are people out there in need of carers because they cant get out of bed, home nothing, as for DLA in the mobilty componment it tells you that its for help to get around so yes it is for taxis and so on


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## shetlandlover (Dec 6, 2011)

I'm pretty sure as long as you've not had a fit in so many years you can actually drive too! 

I don't see why funding would continue after such a long period without the issue, especially as your doctors are weaning you off your medication.


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## nutty (Feb 17, 2013)

shetlandlover said:


> I'm pretty sure as long as you've not had a fit in so many years you can actually drive too!
> 
> I don't see why funding would continue after such a long period without the issue, especially as your doctors are weaning you off your medication.


We dont know for sure that the OP can drive...


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## Guest (May 21, 2013)

No I can't drive due to my visual impairment. Carer I's paid to help me get out and about.


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## nutty (Feb 17, 2013)

I realise it is tough to not have had the feedback to your posts that you might have hoped for, but people in the wider world are struggling so much with the most basic needs being unmet, that we are all shocked to learn that your paid carer can take you to Alton Towers, for example. If your level of disability was such that your trips to Alton Towers formed a necessary therapeutic need, then that might be better received by posters here. Although we dont know the extent to your problems, it hasnt so far appeared that such trips are vital to your life - or perhaps we are missing something?

Naturally, you feel you need the help that you have been getting, but I was wondering whether you had received adequate support to help you achieve as much independance in life as possible, and to help you achieve your full potential? Depending on your level of disability as to what kind of support and direction you might need? 

Edited to say: Independence and potential in the context of being able to work at all


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## lynnenagle (Mar 15, 2013)

I don't think you need a carer. My cousin has learning difficulties and epilepsy and she works, goes on tje bus and has even been to australia on holiday with friends. 
I really don't mean to be rude here but it sounds as though you have never been encouraged to be indipendant. As a mother myself i understand why your mum would want to wrap u in cotton wool. My one year old was diagnosed with asthma and i'm now super protective so it must have been a huge worry for your mum when you were growing up.

However, you are no longer a child and you need to learn to do things for yourself. 
I get annoyed when the bread rips so i take the butter out the fridge in the mornings. 
You would be so much happier if you did things for yourself. I think you need to talk to the doctor about things.


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## nutty (Feb 17, 2013)

lynnenagle said:


> I don't think you need a carer. My cousin has learning difficulties and epilepsy and she works, goes on tje bus and has even been to australia on holiday with friends.
> I really don't mean to be rude here but it sounds as though you have never been encouraged to be indipendant. As a mother myself i understand why your mum would want to wrap u in cotton wool. My one year old was diagnosed with asthma and i'm now super protective so it must have been a huge worry for your mum when you were growing up.
> 
> However, you are no longer a child and you need to learn to do things for yourself.
> ...


I would go further than this, to say that the thing we are charged with as parents, is enabling our children to grow and become independent in life - so far as is possible. This is crucial, because when us parents are no longer around, we need to have ensured that our offspring can survive without us when we are no longer here. It wouldnt necessarily mean survive with no support, but it should if at all possible mean help to live independently from parents, because we wont be around for ever. This must surely begin with first learning the skills needed to do so?


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## j4nfr4n (Mar 10, 2013)

are there no centres for the visually impaired. as i said earlier my mother had tunnel vision from a young child and later lost her sight fully but she as 60 year plus lady had a full life despite heart trouble and having surgery for cancer, she went to a centre for the blind and went on trips and for meals etc and generally met people to talk and enjoy life to her best, i think this is what your lacking having something to do in life. best wishes and enjoy your life as much as you can.


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## tinaK (Jun 12, 2010)

Hope you enjoy your trip to Alton towers with your worker. Today my support worker is taking me to the opticians and helping me make my dinner


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## nutty (Feb 17, 2013)

cloversmum said:


> Hope you enjoy your trip to Alton towers with your worker. Today my support worker is taking me to the opticians and helping me make my dinner


We should guard against being too judgemental, because Although it is understandably frustrating, perhaps Danielled has not been taught about the needs of others, and perhaps she has been enabled to become dependent on carers?:confused1:


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## tinaK (Jun 12, 2010)

nutty said:


> We should guard against being too judgemental, because Although it is understandably frustrating, perhaps Danielled has not been taught about the needs of others, and perhaps she has been enabled to become dependent on carers?:confused1:


Wasn't been judgmental (sightly jealous maybe) was just wishing her a good day, and saying what I was doing with my worker today


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## lynnenagle (Mar 15, 2013)

nutty said:


> We should guard against being too judgemental, because Although it is understandably frustrating, perhaps Danielled has not been taught about the needs of others, and perhaps she has been enabled to become dependent on carers?:confused1:


Thats the feeling i get 2. I do sympathise with her as she's become dependant on carers even though she doesn't really need one


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## nutty (Feb 17, 2013)

cloversmum said:


> Wasn't been judgmental (sightly jealous maybe) was just wishing her a good day, and saying what I was doing with my worker today


I guess, although written in response to your post, it wasnt aimed specifically at you. It was a sort of reminder if you like, that sometimes the situation isnt always as clear as it appears. Whatever is the situation, I am sure we have something to offer Danielled in the way of constructive advice to move forward with her life.


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## Lavenderb (Jan 27, 2009)

nutty said:


> We should guard against being too judgemental, because Although it is understandably frustrating, perhaps Danielled has not been taught about the needs of others, and perhaps she has been enabled to become dependent on carers?:confused1:


Think you hit the nail on the head there. Its really not Dani's fault that she feels she can't cope without the support she's had up to now because it is all she knows.

Dani I want to assure you that there is a wonderful world waiting for you, full of opportunity and if you are brave enough to take those steps towards independence then you will get much braver. I know its scary, but sometimes you have to prove other people wrong, especially your own family. My family don't want me to ride a motorbike any more but I still want to so I will . you have to live your life for yourself.


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## Pointermum (Jul 2, 2010)

The world has gone mad  while elderly stave because they are unable to move to make meals or don't move out of bed all day and are classed as lucky to have a carer to pop in for 15 mins twice a day , there is a carer taking a 24 year old to Alton Towers for the day MADNESS i tell ya 


Well i for one think they are right to cut your budget for a carer !


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## Lavenderb (Jan 27, 2009)

Pointermum said:


> The world has gone mad  while elderly stave because they are unable to move to make meals or don't move out of bed all day and are classed as lucky to have a carer to pop in for 15 mins twice a day , there is a carer taking a 24 year old to Alton Towers for the day MADNESS i tell ya
> 
> Well i for one think they are right to cut your budget for a carer !


I think perhaps the carer should have been more honest here and liased with the appropriate medics in this situation. Surely she must make notes somewhere. Carer might be enjoying this clients lifestyle a little too much maybe ?


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## Pointermum (Jul 2, 2010)

Lavenderb said:


> I think perhaps the carer should have been more honest here and liased with the appropriate medics in this situation. Surely she must make notes somewhere. Carer might be enjoying this clients lifestyle a little too much maybe ?


To me carers should only be provided to help with day to day tasks , like washing, helping with chores/paper work, shopping not jolly day trips out. OP still lives at home i can't understand how she is entitled to this level of care  Maybe if she lived alone to help with the above but trips to Alton Towers and it's not the first time !


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## Waterlily (Apr 18, 2010)

Pointermum said:


> The world has gone mad  while elderly stave because they are unable to move to make meals or don't move out of bed all day and are classed as lucky to have a carer to pop in for 15 mins twice a day , there is a carer taking a 24 year old to Alton Towers for the day MADNESS i tell ya
> 
> Well i for one think they are right to cut your budget for a carer !


yea agree, its kinda a joke that a carer is given to someone so they can go play like a child, when people in real need, like clover needing meals, wash and cleaning should be priority over ones like Dan, so they arent evil imo just realistic.


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## shetlandlover (Dec 6, 2011)

nutty said:


> We dont know for sure that the OP can drive...


No I didn't mean she should, I just meant in the eyes of medical professionals she *could*. As you only need to be seizure free for so many years to be able to have a licence.


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## tinaK (Jun 12, 2010)

I've fought like hell to get my personal budget, and it does annoy me people get one to go to Alton Towers.

Yes, not Danni's fault, it's the system. I've been told many times I'm on a verge of a residential placement, but it's only the fact i get the high level of care, and me not willing to re home my dogs that keeps me at home .


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## DoodlesRule (Jul 7, 2011)

Its a big change for you Danni but you need some guidance about getting help to become more independant, could be wrong but it reads as though you have been held back a lot and not encouraged to be able to do more, told you can't do rather than helped for what you can.

If Danni has been getting the help of a carer for all this time its not really her fault but things have changed now and help isn't there/money not available, hence why it is being cut I imagine.

My mum has dementia and dad is her main carer, he is 83. Family help with some cooking, cleaning, laundary etc but dad does everything else. Told they are entitled to the lower DLA (£50 a week I think) but still waiting, he can't claim carers allowance because you are not entitled once reached retirement age. I hoped he could get a bit of help with washing and dressing mum - but not anymore there is no such funding anymore. When he can no longer cope he can get help but he will have to pay for it out of his state pension and the DLA once they get it


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## Lovehatetragedy (Jul 8, 2010)

shetlandlover said:


> No I didn't mean she should, I just meant in the eyes of medical professionals she *could*. As you only need to be seizure free for so many years to be able to have a licence.


Its a full year since your last seizure you're allowed to reapply for a provisional licence  x


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## redroses2106 (Aug 21, 2011)

I've just read through this thread and think some people are being really harsh/judgemental, obviously at some point it was decided the op needed this carer, she is now used to having her around and relies on her, perhaps more than she should but that's what happens when you get used to things/people being around. I agree a carers job isn't to take someone to a theme park but to help with day to day tasks. Danielled I hope you can figure out some thing to help you, maybe a good friend or family member can pop round to help you with tasks you struggle with, maybe help teach you how to do them for yourself so you can have a little more independence. how do you cope the other days where you don't have a carer? does someone help you or do you manage it yourself? you get by fine on the days without her so you will hopefully manage now she's no longer available to you. 

p.s - I'm useless at buttering bread too


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## swarthy (Apr 24, 2010)

danielled said:


> I can't read Braille. I can never butter bread without it breaking then get agitated and frustrated and usually give up. Even with the spreadable stuff. as for the dog sometimes I walk with a neighbour and his dog. Sometimes mum will come on a walk too so I'm not always walking him by myself. The not being able to go out is my visual impairments fault. Lifes not easy with 2 meters blurred tunnel vision. The keyboard on the iPad I can see as that's big, the iPhone tends to give me nightmares with it's keyboard. It's smaller. I walk Buddy up and down a few times if I'm on my own and then we get back and he's asleep after a quick drink. I sometimes have to use a magnifying glass. Mum even thinks I could have autism but I thought I'd have been told I had that years ago if I did. I know I've got a chromosome disorder but I sure as
> heck haven't got autism. I accidentlly burn things in the toaster too.


I am a tad confused - you have a carer two days a week because you MIGHT have your first epileptic fit in several years - but the real reason for needing a companion is because you are partially sighted? 

I sympathise with ANYONE who has any level of sight impairment - I wouldn't wish it on my worst enemy - the same with epilepsy. I spent a lifetime not recognising the incapacity caused by the most severe aspects of chronic back problems - "poetic justice" caught me up around 3 years ago - a very harsh lesson 

Without getting into the hypothesis and technical aspects - my PhD was on e-learning and website functionality for users with disabilities, with a strong focus on sight impairments, dyslexia, colour blindness, dyspraxia and epilepsy

I ran conferences focussing on providing online services for people with disabilities working very closely with the College for the Blind in Hereford, the RNIB and colleagues predominantly with visual disabilities or blind - some had guide dogs, some didn't.

One of my closest friends (Julia) at Uni was partially sighted, as were her mother and brother - we provided a LOT of support with reading resources as lecturers so often forgot about her (this was 20 years ago, I would hope things have improved since then) - it was her who heavily inspired my future career path).

The only way she could see the computer screen was by putting her nose on it.

I frequently drove her and her friends (inc two University lecturers) to various places - they had a hilarious, but probably offensive name for themselves.

Julia was last heard of travelling across the West Indies and America, hoping to get work in Disneyland at the end of her travels.

My blind colleague with whom I regularly presented lost his sight and part of his hearing during the Falklands war. He had no dog, a white stick and worked for the RNIB, and could erect an exhibition stand twice as fast as me, he's run marathons in some of the most inhospitable terrains in the world - is married with 4 kids and spends his annual holidays in the wine making regions of France.

All the sight impaired and blind people I've met and worked with have been inspirational - how they've managed in the face of such adversity I don't know - it puts me to shame - I've been humbled they accepted me as a friend as well as a colleague - even thinking about it now brings a lump to my throat overcoming obstacles and coping without senses so many of us take for granted.

I'm not saying for one minute that everyone with any level of sight impairment is capable of following in the footsteps of these people- I doubt very much I could in the same situation.

I recall asking if those with sight impairments needed additional assistance at the hotel during one of our conferences - and was very politely told "_point us in the direction of the bar and we'll be fine_"

Danielle - I think you have to be honest about why you believe you need this level of carer support.

Is it because you (along with 600K other people in the UK) fear you might have an epileptic fit even though the medics seem confident you may be able to make a full recovery - or is it because of your sight impairment?

You can't fight for your entitlement to a service for one reason if in truth, you need it for a different reason.

The large majority of people with epilepsy and sight issues don't have this level of carer support, I think I'm right in saying those with sight issues are entitled to the lower mobility component of DLA.

My son in law was a carer before switching to the hospital (the pay and level of commitment required were pitiful) - he was allocated a couple of hours to attend to the most intimate needs of clients with severe learning and physical disabilities - the only time he spent longer there was if overnight care and medication was required.

There are many disability support groups out there that organise events and travel to places such as theme parks etc - there must surely be some in your area?

I have to confess, I am struggling with the concept of someone relatively physically able bodied having a one-on-one carer to go to Alton Towers.

My OH and I, with and without the kids, visited many European theme and water parks and at least annual trips to Alton Towers - I wasn't one for the wild rides - but still enjoyed a day out and some of the milder rides - now because of my back condition, unless I can find a surgeon willing to put me back together again (less than a 1% chance) - my days of these type of activities are over. (even if I did - it's likely that they would be out because of de-stabilising the surgical procedures)

I've had recurrent bouts of acute pancreatitis - if I have an attack and don't get to a hospital in good time, I will probably die - even if I do get there in time there are no guarantees. Having watched my father die the most undignified death from recurrent pancreatitis which turned chronic - it's something frequently uppermost in my mind - even though I don't drink - I don't have gall-stones and there is no hereditary link.

There are many people with a range of health-problems who I've no doubt have some level of concern when going out alone - there are bracelets and necklaces advising onlookers of medical conditions, allergies, patients taking steroids, etc

Please note, I'm not in any way trivialising your health-issues - but I can understand why people are frustrated when there are patients with less physical capacity fighting for the most basic levels of support with many struggling to prove they aren't able to work to get benefits that by rights they should automatically be entitled to.


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## Colliebarmy (Sep 27, 2012)

danielled said:


> Mum supports me the best she can.


I may have missed a bit but if you lose a day carer do you not have the option of a day centre or respite car as an alternative?

the whole NHS/DSS/Care budgets are getting squeezed, the pot is empty (thanks in part to Tony Blair) but folk have got over bigger problems


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## Pixieandbow (Feb 27, 2013)

nutty said:


> I would go further than this, to say that the thing we are charged with as parents, is enabling our children to grow and become independent in life - so far as is possible. This is crucial, because when us parents are no longer around, we need to have ensured that our offspring can survive without us when we are no longer here. It wouldnt necessarily mean survive with no support, but it should if at all possible mean help to live independently from parents, because we wont be around for ever. This must surely begin with first learning the skills needed to do so?


Being over protective and not allowing children to learn by taking reasonable risks forms part of the definition for emotional abuse in the UK. I can see why, children need to be empowered to live as independent adults where possible


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## Guest (May 21, 2013)

No I don't have a carer just because I could have my first seizure in 7 years. There is something I haven't mentioned. I do have learning difficulties that make me reliant on a carer obviously through no fault of my own. Don't know why I never mentioned that in my opening post. Anyway I'm back on happy pills now. After a great day at Alton towers. A friends mum is putting us in contact with somebody who can help us.


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## nutty (Feb 17, 2013)

Hi Danielled,

Thank you for sharing that with us 

Can I ask what sort of problems does your learning disability give you?


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## Lavenderb (Jan 27, 2009)

Just to add Danielle, that you do not have to reveal any information about yourself that you or your family wouldn't be happy with us knowing.


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## nutty (Feb 17, 2013)

Lavenderb said:


> Just to add Danielle, that you do not have to reveal any information about yourself that you or your family wouldn't be happy with us knowing.


Well, I am yet again going to stick my neck out on this...

I would say that in fact it is only Danielles business if she wants ro share something. She is 27. She is able to articulate her needs and opinions. She is able to read and understand what we are saying. I would not say that this in any way demonstrates that she is vulnerable and thus needing the consent of her family before she shares with us.


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## Guest (May 21, 2013)

I'm not 100% sure what learning difficulty/disabilities I have. I just know I have it because mum has told me. I went to a high school for children with special needs.


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## redroses2106 (Aug 21, 2011)

danielled said:


> No I don't have a carer just because I could have my first seizure in 7 years. There is something I haven't mentioned. I do have learning difficulties that make me reliant on a carer obviously through no fault of my own. Don't know why I never mentioned that in my opening post. Anyway I'm back on happy pills now. After a great day at Alton towers. A friends mum is putting us in contact with somebody who can help us.


you don't have to justify the reason you had a carer obviously at the time she was assigned to you it was deemed necessary to you to have her, now they think you don't, who knows, maybe loosing the carer will give you a whole new outlook and more independence, look at it from a positive side, if you can, rather than the negative. glad you had a lovely day


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## rona (Aug 18, 2011)

nutty said:


> Well, I am yet again going to stick my neck out on this...
> 
> I would say that in fact it is only Danielles business if she wants ro share something. She is 27. She is able to articulate her needs and opinions. She is able to read and understand what we are saying. I would not say that this in any way demonstrates that she is vulnerable and thus needing the consent of her family before she shares with us.


I vehemently disagree with this. I worked for 13 years with a chap who had severe learning difficulties. He could converse and articulate probably far better than I, however, he had no understanding or concept of what was deemed "far enough" and would sometimes repeat things or tell people totally inappropriate information.

You cannot judge over a computer screen


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## davidc (Dec 15, 2010)

redroses2106 said:


> I've just read through this thread and think some people are being really harsh/judgemental, obviously at some point it was decided the op needed this carer, she is now used to having her around and relies on her, perhaps more than she should but that's what happens when you get used to things/people being around. I agree a carers job isn't to take someone to a theme park but to help with day to day tasks. Danielled I hope you can figure out some thing to help you, maybe a good friend or family member can pop round to help you with tasks you struggle with, maybe help teach you how to do them for yourself so you can have a little more independence. how do you cope the other days where you don't have a carer? does someone help you or do you manage it yourself? you get by fine on the days without her so you will hopefully manage now she's no longer available to you.
> 
> p.s - I'm useless at buttering bread too


On the days when Danielle's carer hasn't been able to make it, sometimes her mum has managed to bring her and picked her later for the angel centre. I've been there until her mum has picked her up later.
Danielle's carer helps with transport to mention on thing. Although I usually have to cycle to meet Danielle as I can't drive due to epilepsy.


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## nutty (Feb 17, 2013)

rona said:


> I vehemently disagree with this. I worked for 13 years with a chap who had severe learning difficulties. He could converse and articulate probably far better than I, however, he had no understanding or concept of what was deemed "far enough" and would sometimes repeat things or tell people totally inappropriate information.
> 
> You cannot judge over a computer screen


You cannot give consent on behalf of another person. Only the person concerned can give that consent


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## ClaireLouise (Oct 11, 2009)

danielled said:


> I'm not 100% sure what learning difficulty/disabilities I have. I just know I have it because mum has told me. I went to a high school for children with special needs.


Dan it might be worth having a chat with your mum. She could explain to you a little better about your conditions. Learning difficulties and learning disabilities are different things, you can have one or both of them but if you have aspergers it can only be a difficulty. It would be worth sitting with your mum and asking these questions as its good to know about ourselves.


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## rona (Aug 18, 2011)

nutty said:


> You cannot give consent on behalf of another person. Only the person concerned can give that consent


Eh?


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## Lavenderb (Jan 27, 2009)

nutty said:


> You cannot give consent on behalf of another person. Only the person concerned can give that consent


With respect both Rona and myself as well as numerous other members have known Danielle for some years and as she has difficulties I do not like to see her being questioned in such a way. How long have you known Dani?


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## swarthy (Apr 24, 2010)

nutty said:


> You cannot give consent on behalf of another person. Only the person concerned can give that consent


It depends whether the person is deemed to have capacity to give consent under the Mental Capacity Act - if they are not - then a health care professional and / or relative can give consent on the patients behalf


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## nutty (Feb 17, 2013)

rona said:


> Eh?


You responded to my post in which I stated that Danielle did not need to gain consent from her family before sharing with us. I simply wanted to clarify thay in a court of law, certainly from a medical perspective, it is not possible to give consent on behalf of another person who is deemed to be able to have the ability to understand what they are consenting on. Moreover, authorities have a duty to presume that everyone has mental capacity, unless proved otherwise, and to be able make decisions for themselves, even if those decisions are unwise ones.


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## ClaireLouise (Oct 11, 2009)

swarthy said:


> It depends whether the person is deemed to have capacity to give consent under the Mental Capacity Act - if they are not - then a health care professional and / or relative can give consent on the patients behalf


But we have to assume everyone has having capacity unless circumstances give indications of otherwise


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## newfiesmum (Apr 21, 2010)

Lavenderb said:


> With respect both Rona and myself as well as numerous other members have known Danielle for some years and as she has difficulties I do not like to see her being questioned in such a way. How long have you known Dani?


I would like to just say to Danielle that you should not answer anything demanding information. My son has learning difficulties and I know he would feel intimidated were he to encounter all these pages of questions, and he would not tell people to stop.

I haven't read the entire thread but I understand that Danielle came on here just to report that she was losing her carer, not for any other reason and not to be cross examined. My son cannot get a grant or loan for furniture for his new flat because they have stopped giving them. Same way they have stopped carers for people who can manage alone. It is not something anybody wants any more than the other government cuts on the needy, but until we get rid of the lot of them, that is how it has to be.

Just a tip though: Ian, my son, cannot spread bread unless he uses Flora. It is very much more fluid than other spreads so it might be worth a try.


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## Pixieandbow (Feb 27, 2013)

Can I just ask, and you can shoot me down if you like folks...why hasn't Dan's mum explained in more detail exactly what is wrong. Dan is very articulate and isn't at all stupid so surely would understand things. It just all seems slightly vague to me. 

Dan, say something did happen to you and you ended up in hospital, how would you explain exactly what your needs are? I can understand your mum maybe wanting to protect you but there is a slight safety issue with this apart from anything else


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## rona (Aug 18, 2011)

nutty said:


> You responded to my post in which I stated that Danielle did not need to gain consent from her family before sharing with us. I simply wanted to clarify thay in a court of law, certainly from a medical perspective, it is not possible to give consent on behalf of another person who is deemed to be able to have the ability to understand what they are consenting on. Moreover, authorities have a duty to presume that everyone has mental capacity, unless proved otherwise, and to be able make decisions for themselves, even if those decisions are unwise ones.


That's ok if they are actually giving that willingly, but to continue ask personal questions of someone with learning difficulties/disabilties over the internet is not appropriate


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## canuckjill (Jun 25, 2008)

Well I am closing this as really people it is non of our business. If she has had a carer and is now losing her carer of course she is going to be worried, only time will tell if this was not a good idea....or a good idea


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