PIP, and the shrinking of motability/HRM.

uponahill

Anubis wrote: »

You are very lucky to be on HRM/MRC and go to the gymn
for a workout each week.





Aside from that, you are fortunate you can move out of bed to get to said
gymn and you feel well enough to do so.... I don't want a life in bed 24/7 but
have little choice. I can barely make hospital appointments and have to cancel
on several ocassions, let alone a gymn!





I missed award ceremonies for my children at school, 90 percent of parent
evenings throughout for the four of them, having to arrange discussion over the
phone, and when my son moved out to Uni, I could not travel to see him off, I
couldn't even get downstairs that day to see him through the door. Do you
think, if I had a choice, I would purposely miss important times in my
children's lives?





When my daughter was in hospital I could not even visit her....





I am beginning to see Andy...[/QUOTE]

Thanks, but not in me you don't. I know who you are talking about and that is an insult.

Yes I drive myself to do it. I don't want to go half the time, but self determination gets me there no matter how I damn well feel.

I throw up when I come out but I feel that inside I have achieved something.

Even my consultants throw their hands up in the air in despair of me.
They even ask how I can manage it.

Anubis_2

uponahill wrote: »

Thanks, but not in me you don't. I know who you are talking about and that is an insult.

Yes I drive myself to do it. I don't want to go half the time, but self determination gets me there no matter how I damn well feel.

I throw up when I come out but I feel that inside I have achieved something.

Even my consultants throw their hands up in the air in despair of me.
They even ask how I can manage it.

So you have been here a month and know of Andy? :rotfl:

The point is I CAN'T go to the gymn, even if £100,000 depended on it, additionally I CAN'T drive, even though I want to and have to have a designated driver.

If you can work out at the gymn, it is very unlikely you need MRC at the very least, as I know people who couldn't do it and get less.

sunnyone

zaksmum wrote: »

What will happen regarding the DLA descriptor about being VIRTUALLY unable to walk due to "severe discomfort"? At the moment, all walking which causes such discomfort has to be disregarded for the assessment of walking.

Even sitting in a wheelchair would be painful to me due to RTA injuries including severe damage to my hip.

Would this descriptor be scrapped?

I hope that criteria has gone for good, discomfort is a part of life and it certainly isnt a disability.

There is no such thing as being unable to walk due to discomfort.

I was crushed from just under my rib cage down over in a HSRTA, my pelvis is still broken/badly mishapen/damaged nerves etc. 20 years later ( my lower spine is even worse) so Im in a lot of pain sitting, when you cant walk at all you have no choice but to use a wheelchair or spend the 100% of the time bedbound instead of 90%.

Anubis_2

LadyMorticia wrote: »

That was me.

My GP asked me to ask the OT I saw to refer me to Wheelchair Services because I need a wheelchair when outdoors due to severe M.E. I do already have a wheelchair given to me by a friend (someone on this forum, infact) but it isn't suitable for my needs. However, the Wheelchair Services criteria here is that you need the wheelchair for 4 hours a day, 4 days a week, but because I am too ill to go out most of the time and when I am, it's not for that long at all, I wasn't eligible and when I do go out, I am bedbound for days, even weeks afterwards. It is no life. I'm 25. I should be out with my friends or working in my dream job. Not severely ill in bed.

I know, I didn't want to use your name If you ever need to talk I am here.

Anubis_2

sunnyone wrote: »

I hope that criteria has gone for good, discomfort is a part of life and it certainly isnt a disability.

There is no such thing as being unable to walk due to discomfort.

I was crushed from just under my rib cage down over in a HSRTA, my pelvis is still broken/badly mishapen/damaged nerves etc. 20 years later ( my lower spine is even worse) so Im in a lot of pain sitting, when you cant walk at all you have no choice but to use a wheelchair or spend the 100% of the time bedbound instead of 90%.

I strongly disagree. You can drive with adaptations, give me all the adaptations in the world and I could not drive.

I hope people who can drive in receipt of HRC, get their high rate care dropped because driving requires concentration and movement, so IMHO they do not require full day and night care.

I would sooner have no legs than suffer the pain equivalent of stage 3 cancer everyday. Try driving with just a severe toothache with facial infection and see how far you get.

There is a very stark difference between discomfort and severe pain.

sunnyone

Anubis wrote: »

I strongly disagree. You can drive with adaptations, give me all the adaptations in the world and I could not drive.

I hope people who can drive get their care dropped because driving requires concentration and movement, so IMHO they do not require full day and night care.

I would sooner have no legs than suffer the pain equivalent of stage 3 cancer everyday. Try driving with just a severe toothache with facial infection and see how far you get.

There is a very stark difference between discomfort and severe pain.

I cant dress myself or care for my continance needs etc. that requires care therefore I get HRC, comparing it to driving round the doors is stupid.

And you dont have a clue wether I drive or not, I have a WAV with four diffrent places to lock down my wheelchair so I can even lie down in my powerchair to travel to take the pressure of my spine/pelvis.

I am opiate tolerant due to the dosages of opiates Ive been on for twenty years, one of my drugs is 80x stronger than morphine or so, guess what else its used for?

Cancer, Im in so much pain on a daily basis I need that level of pain relief.

I replied to a post about discomfort, not even pain but about pain, it can be seen when its severe and doctors can see the result in clinical tests when your in real pain.

Tooth ache?

:rotfl::rotfl::rotfl::rotfl:

I had a root canal absess and I didnt know about it as it didnt hurt anywhere as much as the rest of me (it was uncomfortable, thats it), the dentist couldnt believe it because most people would have gone to the dental hospital emergency dept. or A&E with an abcess that size.

zaksmum

sunnyone wrote: »

I hope that criteria has gone for good, discomfort is a part of life and it certainly isnt a disability.

There is no such thing as being unable to walk due to discomfort.

I was crushed from just under my rib cage down over in a HSRTA, my pelvis is still broken/badly mishapen/damaged nerves etc. 20 years later ( my lower spine is even worse) so Im in a lot of pain sitting, when you cant walk at all you have no choice but to use a wheelchair or spend the 100% of the time bedbound instead of 90%.

I'm referring to SEVERE discomfort - not just discomfort. And the DWP accept it as a qualifier for DLA so how can you say there's no such thing?

Anubis_2

sunnyone wrote: »

I cant dress myself or care for my continance needs etc. that requires care therefore I get HRC, comparing it to driving round the doors is stupid.

And you dont have a clue wether I drive or not, I have a WAV with four diffrent places to lock down my wheelchair so I can even lie down in my powerchair to travel to take the pressure of my spine/pelvis.

I am opiate tolerant due to the dosages of opiates Ive been on for twenty years, one of my drugs is 80x stronger than morphine or so, guess what else its used for?

Cancer, Im in so much pain on a daily basis I need that level of pain relief.

I replied to a post about discomfort, not even pain but about pain, it can be seen when its severe and doctors can see the result in clinical tests when your in real pain.

Tooth ache?

:rotfl::rotfl::rotfl::rotfl:

I had a root canal absess and I didnt know about it as it didnt hurt anywhere as much as the rest of me (it was uncomfortable, thats it), the dentist couldnt believe it because most people would have gone to the dental hospital emergency dept. or A&E with an abcess that size.

Then you shouldn't be driving, you are a danger on the roads and I find it disgusting you are allowed to. No wonder you didn't feel toothache.

Yes, I know the medication you refer to is Fentanyl patches, been on them myself, very high dose - they did nothing after 8 months so I came off them by request.

While tecnically they are stronger than morphine, they aren't realistically. 100 mg patch (high dose) is equivalent to 10 mg morphine.... I have been on both Morphine and fentanyl in high doses, yes you are right, doctors can tell severe pain.

Please do not underestimate the pain people suffer by suggesting they could walk, and please do not get your jibes in by stating you would be in bed 100 percent of the time, not 90 like me, it is like you are attempting to say your disability is more deserving than anyone else's.

If you wear a belly bag, you do not need help during the night so we will have to agree to disagree. Infact anyone with urine continence issues does not need help during the night.

Try having bowel incontinence - the fact is you can drive, get out, etc, people like me cannot because the strongest pain killer does NOTHING for the pain. As I said I have been on morphine equivalent to 5 largest doses of Fentanyl. (5x100mg patches per day)

I will pu it another way since you claim people like me don't need a wheelchair/motability... If you walked in shoes 4 sizes to small continually for 48 hours. Then take them off, and try to walk, you might have some idea how difficult it is to walk in severe discomfort.

According to you, only people with Paralysed legs or no legs should be allowed, because everyone else, regardles of condition comes under severe discomfort umbrella so that's an awful lot of people you are claiming have no disability and are undeserving.

It's not just pain either... There is weakness and severe breathlessness to consider. So if you think you are more worthy then so be it, I know you are not. Disability is NOT always something that can be seen (as in no legs) many people endure disability in many different ways, it doesn't make them any less disabled than you or I.

zaksmum

Anubis wrote: »

Then you shouldn't be driving, you are a danger on the roads and I find it disgusting you are allowed to. No wonder you didn't feel toothache.

Yes, I know the medication you refer to is Fentanyl patches, been on them myself, very high dose - they did nothing after 8 months so I came off them by request.

While tecnically they are stronger than morphine, they aren't realistically. 100 mg patch (high dose) is equivalent to 10 mg morphine.... I have been on both Morphine and fentanyl in high doses, yes you are right, doctors can tell severe pain.

Please do not underestimate the pain people suffer by suggesting they could walk, and please do not get your jibes in by stating you would be in bed 100 percent of the time, not 90 like me, it is like you are attempting to say your disability is more deserving than anyone else's.

If you wear a belly bag, you do not need help during the night so we will have to agree to disagree. Infact anyone with urine continence issues does not need help during the night.

Try having bowel incontinence - the fact is you can drive, get out, etc, people like me cannot because the strongest pain killer does NOTHING for the pain. As I said I have been on morphine equivalent to 5 largest doses of Fentanyl. (5x100mg patches per day)

I will pu it another way since you claim people like me don't need a wheelchair/motability... If you walked in shoes 4 sizes to small continually for 48 hours. Then take them off, and try to walk, you might have some idea how difficult it is to walk in severe discomfort.

According to you, only people with Paralysed legs or no legs should be allowed, because everyone else, regardles of condition comes under severe discomfort umbrella so that's an awful lot of people you are claiming have no disability and are undeserving.

It's not just pain either... There is weakness and severe breathlessness to consider. So if you think you are more worthy then so be it, I know you are not. Disability is NOT always something that can be seen (as in no legs) many people endure disability in many different ways, it doesn't make them any less disabled than you or I.

Very well said, Anubis.

Anubis_2

zaksmum wrote: »

Very well said, Anubis.

Thanks. It's not just down to pain and it is recognised if you can only walk a few steps without being in SEVERE discomfort then you qualify.

It is too idealistic and a common perception that if you have no legs or are paralysed ( I experience body paralyzation but not 100 percent of the time) then you are disabled.

It also suggests that those with severe diseases are not disabled which is simply untrue.

While disability is subjective, if your body or mind is such that you cannot carry out normal tasks, whether it be through pain, MI or a missing limb etc then you have disability.

Someone with a missing limb ***may*** have a far better quality of life than someone with severe narcolepsy for example, yet a missing limb would be viewed instantly as a disability more than narcolepsy if you put the people side by side because you can see the missing limb.

The attitude that visible disability is more valid than invisible disabilities is a philistine one really, the above example proves that.