PIP complex budgeting decisions

[Deleted User]

Hannah2610 wrote: »

I have absences, partial, complex partial and generalised. Uncontrolled. It does state that its uncontrolled too.x

Me too. When I switched to pip I got 12 points for mobility relating to epilepsy. Got points in care for bathing and cooking that's it, no care award.

Strangely my nephew who also has epilepsy got the same points. He only gets mobility.

On appeal I got high care but the points were relating to my Diagnosed mental health condition not epilepsy.

RGN007

The more that get bombarded with where this is going wrong the more likely it is to change.
My son had just waited 11 months with no money until tribunal reversed everything.
It's criminal how vulnerable people are being treated.
Many MPs have staff who can also help, as do councils with advice and support services.

Hannah2610

No, I cannot move during partials. I cannot talk either. I am aware it is going to happen but I can't make myself safe or tell anyone, I also tend to have generalised without a partial, and clusters when having partials. I also have multi seizures and they are 10 minutes long. It also says on diagnosis to call an ambulance because of the length of the seizures and once it's happened, without intervention, it will keep happening. It also says that the partials are overwhelming and I am connot think properly because lots of thoughts are going through my head that don't make sense.x

Hannah2610

I have spoken to sir Lyndsey Hoyle! An he has agreed to help. I asked on behalf of all of those with epilepsy. It's a very complex condition, one that not many seem to know anything about.
I cried with happiness when I was diagnosed, because leading up to that point I was losing my sanity, my memory, and I was changing as a person. Generalised for me was a blessing, partials were devastating. The safety aspect is also an issue, in hospital I broke my arm, fractured my skull and cheekbone. I was sat in a chair waiting for bloods. I also get post ictal psychosis.x

Hannah2610

Thank you
I too have mental health issues, but apparently this is the epilepsy. I have had issues all my adult life, I have tried fo commit suicide a few times and I have had to be put on life support.
My medical history is riddled with anxiety and depression.
On my diagnosis lette it states.."I have explained to the patient that this condition can be associated with seizures, but also complex memory and emotional difficulties. Patient seemed relieved to have a diagnosis to the myriad of symptoms she has been experiencing and worrying about over the last few years. I developed Geshwind, so its had a dramatic impact on my mental health. The reason I cried with happiness when it generalised, I had an answer to what was happening, geshwind. The relief that it brought. Wow. I'm not insane and I don't have brain cancer, I have epilepsy an it effects my memory and emotions. I forgive myself for the crazy x

Hannah2610

_shel wrote: »

Me too. When I switched to pip I got 12 points for mobility relating to epilepsy. Got points in care for bathing and cooking that's it, no care award.

Strangely my nephew who also has epilepsy got the same points. He only gets mobility.

On appeal I got high care but the points were relating to my Diagnosed mental health condition not epilepsy.

Can I ask, was this anxiety and depression? I have been diagnosed with major depressive disorder, but because it is as a result of the seizures, I didn't say I have the condition. It is however on my letter that I sent in with regards to medical history, so it's there in black and white, its just not been highlighted. Epilepsy is always going to be the biggest issue I face, and it effects not just peoples emotions with temporal lobe, but all epilepsy. It's scary and it can make you feel very lonely. Also medication! I am on keppra and lamictal, also clobozam daily I started a few days ago, klonopin for emergencies. I wasnt prepared for the side effects of meds. Which show on EEG, "excess slowing due to the medication she is taking." I am now on 3 times the amount I was then. It's quite evident in person that I have issues with speech and cognition, I don't know where one issue ends and the other begins, epilepsy or medication. I just know, it effects my life every single day. An it's really hard to get that across x

poppy12345

Hannah2610 wrote: »

I have been diagnosed with major depressive disorder, but because it is as a result of the seizures, I didn't say I have the condition. It is however on my letter that I sent in with regards to medical history, so it's there in black and white, its just not been highlighted.

Is there any reasons why you didn't put this down when you filled out the forms? Did you mention this at all during your face to face assessment? If you didn't then there could be problems with the MR and Tribunal because it's possible they won't take that into consideration because the decision's now been made.


When filling out those forms you must include all of your conditions.

Hannah2610

poppy12345 wrote: »

Is there any reasons why you didn't put this down when you filled out the forms? Did you mention this at all during your face to face assessment? If you didn't then there could be problems with the MR and Tribunal because it's possible they won't take that into consideration because the decision's now been made.


When filling out those forms you must include all of your conditions.

I sent in my diagnosis letter, on that letter it states "I note Hannah's past medical history of anxiety and depression, I have explained to the patient that this condition can be associated with seizures but also complex memory and emotional difficulties."
So my epilepsy causes my issues with mood and memory, it is comorbid as opposed to a separate issue. I was naive to think they would of looked at the diagnosis letter and what the condition actually entails. It's not as straight forward as, Hannah has uncontrolled epilepsy. Every single letter between neurologist and doctor mentions anxiety, depression and memory. An there are statements like "significant problems with memory." And "given her ongoing problems with mood, memory and irritability, I would like to see Hannah once a month." As opposed to every six.
It's all there, I just didn't highlight it. Although I got points for engaging with others. More than likely based on emotions as opposed to seizures? I'm not sure I am way out of my depth.x

[Deleted User]

Hannah2610 wrote: »

Can I ask, was this anxiety and depression? I have been diagnosed with major depressive disorder, but because it is as a result of the seizures, I didn't say I have the condition. It is however on my letter that I sent in with regards to medical history, so it's there in black and white, its just not been highlighted. Epilepsy is always going to be the biggest issue I face, and it effects not just peoples emotions with temporal lobe, but all epilepsy. It's scary and it can make you feel very lonely. Also medication! I am on keppra and lamictal, also clobozam daily I started a few days ago, klonopin for emergencies. I wasnt prepared for the side effects of meds. Which show on EEG, "excess slowing due to the medication she is taking." I am now on 3 times the amount I was then. It's quite evident in person that I have issues with speech and cognition, I don't know where one issue ends and the other begins, epilepsy or medication. I just know, it effects my life every single day. An it's really hard to get that across x

I have several diagnosis, borderline personality disorder, complex PTSD, depression and anxiety. And of course epilepsy

You need to put each diagnosis on the application, do not rely on them picking it up from the evidence you send. You need to tell them how each condition affects you, even if it means sending lots of extra sheets of paper.

Hannah2610

I have just found a letter stating..."Hannah suffers from anergia, I believe this as as a result of medication and the condition itself." I had to look up anergia!x