Worried about pip assessment - have rare condition

Mrs Hurtyback wrote: Good luck 'bob'

Thank you x

Just an update guy's and girls.

I went to see my specialist today as scheduled and he has prescribed me a strong course of Calcium channel blockers, GNT spray and VIAGRA!

He's told me they probably won't work as in most cases they don't solve the issues caused by the condition but there's another treatment I can use but it's not prevalent in the UK but is widely used in the US. He said it would have to source it up north from a specialist. Not sure what he said it was, but think it began with a T.

Here's hoping that something works and relieves your terrible pain - soon!

Hello everyone

I have organised a 'pack' to send to ESA and PIP to assist them with their decision.
I have included:
1x Specialist letter explaining my condition and the impact it has on my every day life;
1x GP letter who has not only listed my condition and given a little information, but also explained the anxiety disorder this illness has given me. This is something I didn't expect him to do. (He has also given a back ground into my medical history from when I suffered with depression years ago when I was between jobs which I now feel I am over and he has told them I still have a Psychological disorder. I don't feel I do?) Plus that I have IBS and used to suffer with chronic back pain after tearing ligaments causing medical discharge from the RAF.
1x print off from a reputable medical website explaining my condition and how there is little success in treatment. (As has my specialist btw.)
3x Witness statements. 1 from a member of my church congregation from when I had an attack during the middle of service and they called an Ambulance. Which was not necessary, but it scared them. 1x from a mother at my boy's school who witnessed an attack; this statement is a very good one. It explained how long I was out of it, what the dangers were, how she was frightened and how my wife had to come to my aid. And one from a friend who has witnessed countless attacks now.
My bank manager says she's going to write one out too.
A 6 day diary that I used a template from the forum benefitsandwork which I think is very good.
A rationale from my old work place explaining why they had to let me go due to impaired capability due to ill health.
Then lastly a 3 page letter explaining how my condition has deteriorated and what descriptors I feel I now meet. It explains that I am now unable to eat most meals time due to regurgitation and choking because of it.
The frequency of the attacks and collapses leading to a toilet issue. Not going to go into too much detail.
How I am unable to stand for long periods, explaining walking distances and how Lisa has to support me to and from places like the toilet, kitchen, in and out of the bath. Among other things. And mentioned regulations 29 and 35 for esa and how my attacks can lead to me injuring myself and the mental well being of colleagues.

I feel I am presenting a pretty strong case, I just hope the DWP see it that way. My specialist and GP are amazing. They have told me whatever support I need from them to fight my corner they will give me.

If I just get Daily living I will be ecstatic. At the end of the day I should meet several criteria's.

1. I cannot prepare food due to danger.
2. I need Lisa to to convey water to my mouth after an attack due to being too weak.
3.I also need prompting to eat as I often miss meals due to fear of choking and or being in too much pain.
4. I need prompting or assistance to be able to take medication due to regurgitation and being sick and worry about taking it.
5. I need assistance every day in and out of the bath.
6. Not always able to wash myself at all and sometimes (rarely) Lisa has to wash me. But she often wash me below the waist because during tight chest symptoms I am unable to reach due to chest restriction. I doubt this one will apply though.
7. I need assistance to be able to manage both bowel and bladder as Lisa has to support me to the toilet at least once or twice a day or more (I have IBS) sometimes she has to hold me on the loo.
8. I need supervision/assistance to dress myself regularly due to being in too much pain. I have been known to suffer an attack whilst putting my trousers on and U fell and hurt my side and bumped my head.
9. I need Lisa to communicate for me at times due to breathlessness or pain but only at times so not sure this applies. Usually I don't go out and socialise, I just stay in when I am bad so it's just me and Lisa when the boys are at school. But they may accept this the 'claimant to exhibit behaviour which would
result in a substantial risk of harm to the claimant or
another person.' I don't know.

Lisa often has to pay bills on my behalf as I am unable to do so because of pain etc

So I know personally that my condition affects at least something in every section of the descriptors.

Thanks for all the help my new friends

bottleofbest wrote: Hello everyone

I have organised a 'pack' to send to ESA and PIP to assist them with their decision.
I have included:
1x Specialist letter explaining my condition and the impact it has on my every day life;
1x GP letter who has not only listed my condition and given a little information, but also explained the anxiety disorder this illness has given me. This is something I didn't expect him to do. (He has also given a back ground into my medical history from when I suffered with depression years ago when I was between jobs which I now feel I am over and he has told them I still have a Psychological disorder. I don't feel I do?) Plus that I have IBS and used to suffer with chronic back pain after tearing ligaments causing medical discharge from the RAF.
1x print off from a reputable medical website explaining my condition and how there is little success in treatment. (As has my specialist btw.)
3x Witness statements. 1 from a member of my church congregation from when I had an attack during the middle of service and they called an Ambulance. Which was not necessary, but it scared them. 1x from a mother at my boy's school who witnessed an attack; this statement is a very good one. It explained how long I was out of it, what the dangers were, how she was frightened and how my wife had to come to my aid. And one from a friend who has witnessed countless attacks now.
My bank manager says she's going to write one out too.
A 6 day diary that I used a template from the forum benefitsandwork which I think is very good.
A rationale from my old work place explaining why they had to let me go due to impaired capability due to ill health.
Then lastly a 3 page letter explaining how my condition has deteriorated and what descriptors I feel I now meet. It explains that I am now unable to eat most meals time due to regurgitation and choking because of it.
The frequency of the attacks and collapses leading to a toilet issue. Not going to go into too much detail.
How I am unable to stand for long periods, explaining walking distances and how Lisa has to support me to and from places like the toilet, kitchen, in and out of the bath. Among other things. And mentioned regulations 29 and 35 for esa and how my attacks can lead to me injuring myself and the mental well being of colleagues.

I feel I am presenting a pretty strong case, I just hope the DWP see it that way. My specialist and GP are amazing. They have told me whatever support I need from them to fight my corner they will give me.

If I just get Daily living I will be ecstatic. At the end of the day I should meet several criteria's.

1. I cannot prepare food due to danger.
2. I need Lisa to to convey water to my mouth after an attack due to being too weak.
3.I also need prompting to eat as I often miss meals due to fear of choking and or being in too much pain.
4. I need prompting or assistance to be able to take medication due to regurgitation and being sick and worry about taking it.
5. I need assistance every day in and out of the bath.
6. Not always able to wash myself at all and sometimes (rarely) Lisa has to wash me. But she often wash me below the waist because during tight chest symptoms I am unable to reach due to chest restriction. I doubt this one will apply though.
7. I need assistance to be able to manage both bowel and bladder as Lisa has to support me to the toilet at least once or twice a day or more (I have IBS) sometimes she has to hold me on the loo.
8. I need supervision/assistance to dress myself regularly due to being in too much pain. I have been known to suffer an attack whilst putting my trousers on and U fell and hurt my side and bumped my head.
9. I need Lisa to communicate for me at times due to breathlessness or pain but only at times so not sure this applies. Usually I don't go out and socialise, I just stay in when I am bad so it's just me and Lisa when the boys are at school. But they may accept this the 'claimant to exhibit behaviour which would
result in a substantial risk of harm to the claimant or
another person.' I don't know.

Lisa often has to pay bills on my behalf as I am unable to do so because of pain etc

So I know personally that my condition affects at least something in every section of the descriptors.

Thanks for all the help my new friends

Hi bofb,

It looks like you have provided detailed information, and hopefully it will result in the correct awards.

Remember, with PIP Mobility, it is only a walking test, (Stand then Move) whereas the Moving around activity with ESA is not only a walking test, you are also assessed on whether you could manually propel a wheelchair unaided, even if you have never had or used a manual wheelchair :

"1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid is normally or could reasonably be worn or used."

From :

WRAG (LCW)Schedule 2 Descriptors

&

"1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid is normally or could reasonably be worn or used."

From :

SG (LCWRA)Schedule 3 Descriptors

bro58

bro58 wrote:

bottleofbest wrote: Hello everyone

I have organised a 'pack' to send to ESA and PIP to assist them with their decision.
I have included:
1x Specialist letter explaining my condition and the impact it has on my every day life;
1x GP letter who has not only listed my condition and given a little information, but also explained the anxiety disorder this illness has given me. This is something I didn't expect him to do. (He has also given a back ground into my medical history from when I suffered with depression years ago when I was between jobs which I now feel I am over and he has told them I still have a Psychological disorder. I don't feel I do?) Plus that I have IBS and used to suffer with chronic back pain after tearing ligaments causing medical discharge from the RAF.
1x print off from a reputable medical website explaining my condition and how there is little success in treatment. (As has my specialist btw.)
3x Witness statements. 1 from a member of my church congregation from when I had an attack during the middle of service and they called an Ambulance. Which was not necessary, but it scared them. 1x from a mother at my boy's school who witnessed an attack; this statement is a very good one. It explained how long I was out of it, what the dangers were, how she was frightened and how my wife had to come to my aid. And one from a friend who has witnessed countless attacks now.
My bank manager says she's going to write one out too.
A 6 day diary that I used a template from the forum benefitsandwork which I think is very good.
A rationale from my old work place explaining why they had to let me go due to impaired capability due to ill health.
Then lastly a 3 page letter explaining how my condition has deteriorated and what descriptors I feel I now meet. It explains that I am now unable to eat most meals time due to regurgitation and choking because of it.
The frequency of the attacks and collapses leading to a toilet issue. Not going to go into too much detail.
How I am unable to stand for long periods, explaining walking distances and how Lisa has to support me to and from places like the toilet, kitchen, in and out of the bath. Among other things. And mentioned regulations 29 and 35 for esa and how my attacks can lead to me injuring myself and the mental well being of colleagues.

I feel I am presenting a pretty strong case, I just hope the DWP see it that way. My specialist and GP are amazing. They have told me whatever support I need from them to fight my corner they will give me.

If I just get Daily living I will be ecstatic. At the end of the day I should meet several criteria's.

1. I cannot prepare food due to danger.
2. I need Lisa to to convey water to my mouth after an attack due to being too weak.
3.I also need prompting to eat as I often miss meals due to fear of choking and or being in too much pain.
4. I need prompting or assistance to be able to take medication due to regurgitation and being sick and worry about taking it.
5. I need assistance every day in and out of the bath.
6. Not always able to wash myself at all and sometimes (rarely) Lisa has to wash me. But she often wash me below the waist because during tight chest symptoms I am unable to reach due to chest restriction. I doubt this one will apply though.
7. I need assistance to be able to manage both bowel and bladder as Lisa has to support me to the toilet at least once or twice a day or more (I have IBS) sometimes she has to hold me on the loo.
8. I need supervision/assistance to dress myself regularly due to being in too much pain. I have been known to suffer an attack whilst putting my trousers on and U fell and hurt my side and bumped my head.
9. I need Lisa to communicate for me at times due to breathlessness or pain but only at times so not sure this applies. Usually I don't go out and socialise, I just stay in when I am bad so it's just me and Lisa when the boys are at school. But they may accept this the 'claimant to exhibit behaviour which would
result in a substantial risk of harm to the claimant or
another person.' I don't know.

Lisa often has to pay bills on my behalf as I am unable to do so because of pain etc

So I know personally that my condition affects at least something in every section of the descriptors.

Thanks for all the help my new friends

Hi bofb,

It looks like you have provided detailed information, and hopefully it will result in the correct awards.

Remember, with PIP Mobility, it is only a walking test, (Stand then Move) whereas the Moving around activity with ESA is not only a walking test, you are also assessed on whether you could manually propel a wheelchair unaided, even if you have never had or used a manual wheelchair :

"1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid is normally or could reasonably be worn or used."

From :

WRAG (LCW)Schedule 2 Descriptors

&

"1. Mobilising unaided by another person with or without a walking stick, manual wheelchair or other aid if such aid is normally or could reasonably be worn or used."

From :

SG (LCWRA)Schedule 3 Descriptors

bro58

Hi Bro.

Thanks for that information. I didn't know that and have no idea if I could or couldn't manually propel a wheelchair tbh never tried. What I would say though is if someone is too breathless and in too pain to walk, can you manually propel a wheel chair? The thing with my condition is I imagine some one squeezing your heart with ridiculous pressure. That's what it feels like even though it's not actually my heart because the nerves to the heart and Oesophagus are connected to each other.
I physically am unable to move during these times and it's 3 or four times a day, and can suffer from minutes or hours at the very worst. It's very scary.