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PIP Review Unhappy With Result
- John93
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3 days 6 hours ago #312517 by John93
PIP Review Unhappy With Result was created by John93
Hi, I recently had my PIP review. I had a text from the DWP on Friday 13 Feb to say they received my form, and a text on Monday 16 Feb to say that my review was complete. I just received my letter from them.
They gave me the exact same points for each activity as my initial PIP assessment. However, I told them in my PIP review form with copies of medical letters that I now have an undiagnosed neurodegenerative condition which amongst other things has caused chronic neurogenic changes in some muscles and swallowing difficulties. I explained the additional problems I have. I also enclosed proof of this along with a copy of a letter from my Speech and Language Therapist stating things like I am now on an easy-to -chew diet, I must eat slowly with several clearing swallows between mouthfuls, and also drink sips of liquid between mouthfuls. This means it takes me at least twice as long as someone without my condition, but I scored 0 points for eating and drinking! The letter stated I can eat and drink unaided. I scored 9 points overall to receive standard living and have kept my enhanced mobility. Should I appeal, especially on the eating and drinking descriptor?
They gave me the exact same points for each activity as my initial PIP assessment. However, I told them in my PIP review form with copies of medical letters that I now have an undiagnosed neurodegenerative condition which amongst other things has caused chronic neurogenic changes in some muscles and swallowing difficulties. I explained the additional problems I have. I also enclosed proof of this along with a copy of a letter from my Speech and Language Therapist stating things like I am now on an easy-to -chew diet, I must eat slowly with several clearing swallows between mouthfuls, and also drink sips of liquid between mouthfuls. This means it takes me at least twice as long as someone without my condition, but I scored 0 points for eating and drinking! The letter stated I can eat and drink unaided. I scored 9 points overall to receive standard living and have kept my enhanced mobility. Should I appeal, especially on the eating and drinking descriptor?
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2 days 53 minutes ago #312559 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic PIP Review Unhappy With Result
Hi John93
I can't tell you whether you should put in for a Mandatory Reconsideration - only you can decide - but certainly it sounds as if they ignored the difficulties you now have swallowing, because you have an 'undiagnosed condition". But you have the back-up from medical professionals stating that this is an issue for you, so they really have no excuse. One other thought - how long has this been an issue for you. The DWP will not take account of a condition until a person has had it for at least three months before informing them and that it will last for another 9 months afterwards. Clearly, yours is going to be ongoing, but I just wanted to check the prior date; I have a feeling this is not new.
MR's are not easy to win - even when you should (Only 27%) are successful, but if you have the energy - go for it and point out just how mistaken they are. Also, look at other questions, because if you have muscle changes and swallowing problems, you are going to experience exhaustion and other symptoms, which may not have scored you as highly as you could.
By the way, did you get a copy of the assessment report? It's called a PA4 if you had a telephone or face-to-face assessment. If it was a paper-based decision there will be no report - which always makes it more challenging to fight. If there was a report - you can ring the DWP and ask for a copy.
BIS
I can't tell you whether you should put in for a Mandatory Reconsideration - only you can decide - but certainly it sounds as if they ignored the difficulties you now have swallowing, because you have an 'undiagnosed condition". But you have the back-up from medical professionals stating that this is an issue for you, so they really have no excuse. One other thought - how long has this been an issue for you. The DWP will not take account of a condition until a person has had it for at least three months before informing them and that it will last for another 9 months afterwards. Clearly, yours is going to be ongoing, but I just wanted to check the prior date; I have a feeling this is not new.
MR's are not easy to win - even when you should (Only 27%) are successful, but if you have the energy - go for it and point out just how mistaken they are. Also, look at other questions, because if you have muscle changes and swallowing problems, you are going to experience exhaustion and other symptoms, which may not have scored you as highly as you could.
By the way, did you get a copy of the assessment report? It's called a PA4 if you had a telephone or face-to-face assessment. If it was a paper-based decision there will be no report - which always makes it more challenging to fight. If there was a report - you can ring the DWP and ask for a copy.
BIS
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1 day 23 hours ago #312568 by John93
Replied by John93 on topic PIP Review Unhappy With Result
Thanks for the reply. I really appreciate it as I've been so upset over it all.
I put on my PIP review form that I've had the neurological condition for about 3 years. I didn't list dysphagia, balance issues and chronic neurogenic changes etc on the health condition list as I thought they are symptoms of the neurological condition and not a diagnosis in themselves. I am now beginning to wonder if that was a mistake?
I did add the differential diagnosis list that the neurologist gave me which is CANVAS syndrome, spinocerebellar ataxia, primary lateral sclerosis or genetic central motor control disorder. All these conditions cause balance issues, dysphagia, muscle weakness etc.
I was diagnosed with dysphagia in November 2025, but I've probably had it for at least 3 years.
The latest letter from my neurologist in January 26 referred to the nerve conduction studies and muscle tests I had in about November last year. These tests showed the chronic neurogenic changes in my muscles - chronic obviously meaning I've had it for some time, not just 3 months.
I have a host of other conditions (21 listed on the PIP form!) including degenerative disc disease, osteoporosis (which I kept mentioning with the dangers of losing my balance), cervical spondylosis, bile salt malabsorption and many others.
I did feel that I scored too low on other activities e.g preparing a meal - I scored 2 points for needing an aid or appliance.
In the form I told them that aids and appliances don't solve my functional problems like fatigue and poor grip. I gave examples of losing my balance in the kitchen, the fatigue, and dropping a knife due to poor grip and accidently cutting myself. I told them I am at risk of falling even if sitting on a stool and linked everything back to the relevant conditions.
I wasn't happy with some of the other points I scored either and from what you said it does make me think the lack of diagnosis of my neurological condition is what the DWP are using as an excuse for the low score, and here's me thinking it's not the condition but how it affects you!
I had a paper based assessment and the decision was made within 2 days of them receiving my form and additional evidence.
The thought of doing an MR and probably an appeal is very daunting, especially with multiple conditions and severe fatigue. I put on my form that I had to take regular breaks when filling it in due to fatigue, and even had to lie down and sleep at times as it made me so tired.
Would a definite diagnosis improve my chances of an increased award in the future? Unfortunately that could take some time due to the rare nature of my condition. Sadly I am not going to improve.
Apologies for the long post. I'm letting off steam!
I put on my PIP review form that I've had the neurological condition for about 3 years. I didn't list dysphagia, balance issues and chronic neurogenic changes etc on the health condition list as I thought they are symptoms of the neurological condition and not a diagnosis in themselves. I am now beginning to wonder if that was a mistake?
I did add the differential diagnosis list that the neurologist gave me which is CANVAS syndrome, spinocerebellar ataxia, primary lateral sclerosis or genetic central motor control disorder. All these conditions cause balance issues, dysphagia, muscle weakness etc.
I was diagnosed with dysphagia in November 2025, but I've probably had it for at least 3 years.
The latest letter from my neurologist in January 26 referred to the nerve conduction studies and muscle tests I had in about November last year. These tests showed the chronic neurogenic changes in my muscles - chronic obviously meaning I've had it for some time, not just 3 months.
I have a host of other conditions (21 listed on the PIP form!) including degenerative disc disease, osteoporosis (which I kept mentioning with the dangers of losing my balance), cervical spondylosis, bile salt malabsorption and many others.
I did feel that I scored too low on other activities e.g preparing a meal - I scored 2 points for needing an aid or appliance.
In the form I told them that aids and appliances don't solve my functional problems like fatigue and poor grip. I gave examples of losing my balance in the kitchen, the fatigue, and dropping a knife due to poor grip and accidently cutting myself. I told them I am at risk of falling even if sitting on a stool and linked everything back to the relevant conditions.
I wasn't happy with some of the other points I scored either and from what you said it does make me think the lack of diagnosis of my neurological condition is what the DWP are using as an excuse for the low score, and here's me thinking it's not the condition but how it affects you!
I had a paper based assessment and the decision was made within 2 days of them receiving my form and additional evidence.
The thought of doing an MR and probably an appeal is very daunting, especially with multiple conditions and severe fatigue. I put on my form that I had to take regular breaks when filling it in due to fatigue, and even had to lie down and sleep at times as it made me so tired.
Would a definite diagnosis improve my chances of an increased award in the future? Unfortunately that could take some time due to the rare nature of my condition. Sadly I am not going to improve.
Apologies for the long post. I'm letting off steam!
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1 hour 25 minutes ago #312611 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic PIP Review Unhappy With Result
Hi John93
There is no need to apologise for the length of your post - you write just as much as you need to.
I suspect that two things possibly occurred: 1. The person who looked at your form had no understanding of your conditions, particularly any that are less common. 2. If you had 21 conditions listed on the form, they probably got confused over what was relevant as far as the PIP criteria was concerned.
I don't know whether you want to put in for an MR - but one thing you need to emphasise is the information from page 17 of the Guide to PIP Claims and Reviews:
‘Reliably’ - the most important PIP word
It’s vital that, before you complete your form, you understand that just because you can carry out an
activity, that doesn’t mean you are prevented from scoring points for being unable to do it.
Guidance issued by the DWP states that you need to be able to complete an activity ‘reliably’ in
order for it to apply. According to the guidance, ‘reliably’ means whether you can do so:
• Safely – in a fashion that is unlikely to cause harm to themselves or to another person. (See the
‘Safety and supervision’ section immediately below for more on this).
• To a necessary and acceptable standard – given the nature of the activity.
• Repeatedly – as often as is reasonably required.
• In a reasonable time period no more than twice as long as a person without a physical or mental
health condition would take to carry out the activity.
Even from the little you have said, you would not deem to be safe in the kitchen with balance issues and would not be cooking repeatedly. You certainly have issues getting sufficient nutrition. Do you have difficulties getting dressed? I would have thought so and are you safe? I suspect that your conditions affect most of the questions so yes, there is a chance you have been underscored. You just need to try and convince the DWP of that or perhaps a Tribunal panel. It does take a lot out of people, and only you can decide, but you have 13 months from the date on the decision letter to put in a late Mandatory Reconsideration if you can't meet the initial one-month deadline. You have to give a reason for sending in a late one - but I think being "Ill" should be quite sufficient for you.
You already linked everything back to your conditions. I'm not sure what more you are going to be able to say - apart from the assessor was "mistaken,", "misunderstood,", "ommitted", "failed to understand," "ignored..." etc etc
Whatever you decide - do what is best for you right now.
BIS
There is no need to apologise for the length of your post - you write just as much as you need to.
I suspect that two things possibly occurred: 1. The person who looked at your form had no understanding of your conditions, particularly any that are less common. 2. If you had 21 conditions listed on the form, they probably got confused over what was relevant as far as the PIP criteria was concerned.
I don't know whether you want to put in for an MR - but one thing you need to emphasise is the information from page 17 of the Guide to PIP Claims and Reviews:
‘Reliably’ - the most important PIP word
It’s vital that, before you complete your form, you understand that just because you can carry out an
activity, that doesn’t mean you are prevented from scoring points for being unable to do it.
Guidance issued by the DWP states that you need to be able to complete an activity ‘reliably’ in
order for it to apply. According to the guidance, ‘reliably’ means whether you can do so:
• Safely – in a fashion that is unlikely to cause harm to themselves or to another person. (See the
‘Safety and supervision’ section immediately below for more on this).
• To a necessary and acceptable standard – given the nature of the activity.
• Repeatedly – as often as is reasonably required.
• In a reasonable time period no more than twice as long as a person without a physical or mental
health condition would take to carry out the activity.
Even from the little you have said, you would not deem to be safe in the kitchen with balance issues and would not be cooking repeatedly. You certainly have issues getting sufficient nutrition. Do you have difficulties getting dressed? I would have thought so and are you safe? I suspect that your conditions affect most of the questions so yes, there is a chance you have been underscored. You just need to try and convince the DWP of that or perhaps a Tribunal panel. It does take a lot out of people, and only you can decide, but you have 13 months from the date on the decision letter to put in a late Mandatory Reconsideration if you can't meet the initial one-month deadline. You have to give a reason for sending in a late one - but I think being "Ill" should be quite sufficient for you.
You already linked everything back to your conditions. I'm not sure what more you are going to be able to say - apart from the assessor was "mistaken,", "misunderstood,", "ommitted", "failed to understand," "ignored..." etc etc
Whatever you decide - do what is best for you right now.
BIS
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