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parkinsons.
- Mary36900
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3 months 3 weeks ago #293551 by Mary36900
parkinsons. was created by Mary36900
Hi
I was diagnosed with Parkinson's Disease (PD)
3 years ago, when I was in hospital by a locum consultant neurologist
When I saw my consultant neurologist at outpatients a few weeks later, I was told that I didn’t have PD. As I was on medication for PD, I continued to see the PD Nurse Specialist who treated me as if I did have PD. Eventually, it was decided that I was to have a DaT scan to obtain a differential diagnosis.
At the same time, I received a review form for PIP (having received a letter the week before saying my PIP Award had been extended). I found it very stressful and difficult filling in the form, not knowing my diagnosis and having several other chronic conditions. (as well as being 3 weeks before Christmas).
In the January the DaT scan confirmed the PD diagnosis.
My assessment didn't happen until April 2023, so a lot of what was on the form, was out of date. I had just found Benefits and work, and consequently realised that I hadn't filled.the form in as well as I could have.
(I was just getting back on my feet after having fractured my knee and wŕist).
I had a phone interview which on reflection was the worst type of interview for me as my voice is very quiet and the assessor had to keep asking me to repeat what I'd said.
My PIP Award was continued - Enhanced Daily Living and Standard Mobility.
Since I had the interview I have had a lot of abdominal pain and was put on a waiting list for an epigastric hernia repair. I have had other Gastro-intestinal symptoms as well and been in extreme pain. I had a CT scan last week to investigate my symptoms.
Since the end of May my PD symptoms and mobility have deteriorated. I phoned DWP to inform them of a change in my condition and agreed for a review form to be sent out. My first question is - I reach State Pension age in September, so if I send the form back by this time next month, will I encounter any problems with the review because of this?
My aim is to try and get Enhanced Mobility as my condition is probably going to get even worse.
In the Moving Around category I am not sure what to put. Please could you advise me which category is relevant?Currently, I get 10 points for standing, using my walking stick, moving 20 to 50 metres.
The deterioration in my mobility is :
Numb or tingling feet/toes
Cramp in legs and cramps (twisting) in right foot
Stiffness in left shoulder, arm and hand has become worse
Tremor of left foot and right hand is worse.
Started to get tremor of right leg and arm
Oral tremor is worse.
Having difficulties :
Getting into/out of bed (Standing up) - have moved downstairs to use hospital bed as it can be lowered
Getting out of recliner chair and standing up
Getting off toilet (I do have commodes - upstairs and downstairs)
Shuffling, freezing and dragging left foot
Posture is worse
Fear of falling (history of falls)
These symptoms are not all the time but increasing. My PD medication doesn't seem to be effective. I have finally met the new PD nurse who is going to add another medication.
I have asked for a copy of my assessment to be sent (I previously asked but didn't receive it).
I would be grareful for any advice regarding this.
Many thanks
Gilly
I was diagnosed with Parkinson's Disease (PD)
3 years ago, when I was in hospital by a locum consultant neurologist
When I saw my consultant neurologist at outpatients a few weeks later, I was told that I didn’t have PD. As I was on medication for PD, I continued to see the PD Nurse Specialist who treated me as if I did have PD. Eventually, it was decided that I was to have a DaT scan to obtain a differential diagnosis.
At the same time, I received a review form for PIP (having received a letter the week before saying my PIP Award had been extended). I found it very stressful and difficult filling in the form, not knowing my diagnosis and having several other chronic conditions. (as well as being 3 weeks before Christmas).
In the January the DaT scan confirmed the PD diagnosis.
My assessment didn't happen until April 2023, so a lot of what was on the form, was out of date. I had just found Benefits and work, and consequently realised that I hadn't filled.the form in as well as I could have.
(I was just getting back on my feet after having fractured my knee and wŕist).
I had a phone interview which on reflection was the worst type of interview for me as my voice is very quiet and the assessor had to keep asking me to repeat what I'd said.
My PIP Award was continued - Enhanced Daily Living and Standard Mobility.
Since I had the interview I have had a lot of abdominal pain and was put on a waiting list for an epigastric hernia repair. I have had other Gastro-intestinal symptoms as well and been in extreme pain. I had a CT scan last week to investigate my symptoms.
Since the end of May my PD symptoms and mobility have deteriorated. I phoned DWP to inform them of a change in my condition and agreed for a review form to be sent out. My first question is - I reach State Pension age in September, so if I send the form back by this time next month, will I encounter any problems with the review because of this?
My aim is to try and get Enhanced Mobility as my condition is probably going to get even worse.
In the Moving Around category I am not sure what to put. Please could you advise me which category is relevant?Currently, I get 10 points for standing, using my walking stick, moving 20 to 50 metres.
The deterioration in my mobility is :
Numb or tingling feet/toes
Cramp in legs and cramps (twisting) in right foot
Stiffness in left shoulder, arm and hand has become worse
Tremor of left foot and right hand is worse.
Started to get tremor of right leg and arm
Oral tremor is worse.
Having difficulties :
Getting into/out of bed (Standing up) - have moved downstairs to use hospital bed as it can be lowered
Getting out of recliner chair and standing up
Getting off toilet (I do have commodes - upstairs and downstairs)
Shuffling, freezing and dragging left foot
Posture is worse
Fear of falling (history of falls)
These symptoms are not all the time but increasing. My PD medication doesn't seem to be effective. I have finally met the new PD nurse who is going to add another medication.
I have asked for a copy of my assessment to be sent (I previously asked but didn't receive it).
I would be grareful for any advice regarding this.
Many thanks
Gilly
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- BIS
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3 months 3 weeks ago #293572 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic parkinsons.
Hi Gilly
In your post, you ask if there is any potential problem with your PIP review (change of circumstances) and the fact that you are so close to SPA. Unfortunately, there could be, and you may have a battle on your hands.
After SPA - a claimant cannot increase their mobility award. You are going to reach that milestone in September. It depends when they complete this review.
Now you already informed them of your deteriorating health back in May, so if they decide you should be awarded Enhanced Mobility, it should be backdated to May and then continue on regardless of reaching SPA in September.
However, be warned that the DWP may try some dirty tricks and they may hold back the result of your review and then tell you in September that although you meet the criteria for enhanced mobility because you have reached SPA it cannot be increased. This has happened to other people. That's when you will need to remind them that you informed them well before your birthday and it is not your fault that they have taken so long to process your award. Ask to speak to a Senior Case Manager - if this occurs.
I'm only warning you about what could happen, not what will definitely happen. So I hope that you are lucky and they agree to increase your mobility. You should hope for 2e. "Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points." This is because your issues (tingling and numbness) start before you even try to stand up,. This means you are slower, less steady, less reliable and safe than someone who doesn't have the same condition. If you are telling them that your symptoms fluctuate, you need to make it clear that they are bad for the majority of the time now. They award on where you currently are - not where you might be in the future.
BIS
In your post, you ask if there is any potential problem with your PIP review (change of circumstances) and the fact that you are so close to SPA. Unfortunately, there could be, and you may have a battle on your hands.
After SPA - a claimant cannot increase their mobility award. You are going to reach that milestone in September. It depends when they complete this review.
Now you already informed them of your deteriorating health back in May, so if they decide you should be awarded Enhanced Mobility, it should be backdated to May and then continue on regardless of reaching SPA in September.
However, be warned that the DWP may try some dirty tricks and they may hold back the result of your review and then tell you in September that although you meet the criteria for enhanced mobility because you have reached SPA it cannot be increased. This has happened to other people. That's when you will need to remind them that you informed them well before your birthday and it is not your fault that they have taken so long to process your award. Ask to speak to a Senior Case Manager - if this occurs.
I'm only warning you about what could happen, not what will definitely happen. So I hope that you are lucky and they agree to increase your mobility. You should hope for 2e. "Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points." This is because your issues (tingling and numbness) start before you even try to stand up,. This means you are slower, less steady, less reliable and safe than someone who doesn't have the same condition. If you are telling them that your symptoms fluctuate, you need to make it clear that they are bad for the majority of the time now. They award on where you currently are - not where you might be in the future.
BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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