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Brain AVM (Arteriovenous malformations) and PIP

Alfie131

Hi Everyone
I am new to the scope community - I am trying to help my 22 year old daughter she has a Brain AVM (Arteriovenous malformations) which causes her to have bad headaches and migraines and can at times cause her weakness and involuntary movements in her right side as a result of a bleed on the brain whilst pregnant - she is currently being treated for it and is due to undergo radiation therapy to try to shrink it. She has applied for PIP and has been told she is not entitled to it. Is there any help or support she might be entitled to?

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CockneyRebel

Hello Alfie and welcome

I am so sorry that your daughter is having problems.

When was your daughter given the decision ?
Have you requested a copy of the HCP report ?
Have you asked for a Mandatory Reconsideration ?

PIP is primarily a functionality test if people have problems with daily living for three months and which are likely to last at least a further nine months.

PIP has been intentionally made difficult to qualify for and many people turned down in the initial assessment go on to receive an award at appeal.

If you can give us a little more info we might be ableto point you in the right direction

CR

Alfie131

Hi thanks for replying my daughter was given the decision initially in February 2017 and then she appealed against the decision in May 2017 as stress aggravates her condition I told her I would try to appeal against the decision for her - I have a copy of the mandatory reconsideration notice - however I am not sure what a HCP report is?

CockneyRebel

HCP report is the assessors report (HCP health care proffesional ) You can request this from the DWP (PA4 I think ) this will tell you what the assessor scored her. and what you have to challenge
To start an appeal to the tribunal you will need form SSCS1. you should submit this within 1 month of the date of the MR. You do not have to go into detail at this stage just basic reasons for appeal.
There is a lot of info on this site with regard to appeals etc.

Please come back and ask any questions and we will be happy to try and help

CR

steve51

Hi @Alfie131

A very big welcome to you I do hope that we can help/support.

Here's some info for you on PIP, please let me know if you require anymore.

https://community.scope.org.uk/categories/benefits-and-finances

I hope that you don't mind but I have/had a AVM.

I have also be treated with Radiation (SRS)

If there is any help or support that I can offer you please please ask.

kevin888

Hello;
I have had a brain AVM also treated with Gamma Knife Radiotherapy , the AVM is now sealed but I am left with epilepsy, headaches balance speech memory after effects. The DWP will try to make out the AVM is the only medical problem and now treated is OK and if Epilepsy is controlled it is OK, according to them But we know the main problems are the after effects of the damaged brain caused in my case by the Radiotherapy. They dont understand this so try and fob us off through the process but dont give up. Most of the so-called Health Proffessionals are not qualified to judge the conditions but the decision is based mostly on thier report, when you get the PA4 report yo will probably see conflicting things on there! I am waiting for my tribunal now after the MR and Apeall process. After you ask for form SSC1 they will send you the "bundle", 150 odd pages mine is to take to the tribunal.Also all letters etc are usefull If you can contact the CAB and they will help, also look on their website for guide through the process. I was on DLA indefinate so thought this would be simple to move to PIP! It has been 10 months now so is a long process but all money owing will be backdated if you are entitled to it which you are. They make it hard to go through the process and lots drop out and thats where they save,but please keep going till you get the award entitled to you. Anything else please ask
Kevin

NelMac

Hi Kevin and everyone else here. I was born with a cerebral AVM which caused me major concentration/memory/personality and behavioural problems, was put in care and have no formal qualifications as a result. When I had a bleed and was diagnosed it finally all made sense as I'd been telling people all my life there was something wrong but no-one listened. I just kept getting locked up. After gamma knife radiosurgery, I've had a craniotomy and then fractured my skull. My DLA award was indefinite and I've just failed to qualify for PIP after they cut my DLA.

I've just been re-assesed but I know it will not be in my favour. Meanwhile they are cutting jobseekers and are about to force me to claim universal credit.

Not ONE empoyer on planet earth is going to emply me. I've a 12 " scar and a hole in my head, suffer severe headaches and tinnitus and still cant concentrate. My left side is weak and I sooo look forward to the day I die I'm almost at the point of.....(I'l not say that here).

What can we do ?

This system is designed to make me feel what I'm feeling rightnow apparently.

Who knows what the future holds...but I'm being victimised and discriminated against by my own government.

I hope everyone gets their deserved PIP in order to survive but the more this torture continues I ask myself whats the point.

Pippa_Alumni

Hi @NelMac, and a warm welcome to the community.

Thanks for sharing this with us, and I'm so sorry to hear about your PIP outcome. You mention re-applying, but are you appealing the decision?

Yadnad

NelMac said:

Hi Kevin and everyone else here. I was born with a cerebral AVM which caused me major concentration/memory/personality and behavioural problems, was put in care and have no formal qualifications as a result. When I had a bleed and was diagnosed it finally all made sense as I'd been telling people all my life there was something wrong but no-one listened. I just kept getting locked up. After gamma knife radiosurgery, I've had a craniotomy and then fractured my skull. My DLA award was indefinite and I've just failed to qualify for PIP after they cut my DLA.
I've just been re-assesed but I know it will not be in my favour. Meanwhile they are cutting jobseekers and are about to force me to claim universal credit.
Not ONE empoyer on planet earth is going to emply me. I've a 12 " scar and a hole in my head, suffer severe headaches and tinnitus and still cant concentrate. My left side is weak and I sooo look forward to the day I die I'm almost at the point of.....(I'l not say that here).
What can we do ?
This system is designed to make me feel what I'm feeling rightnow apparently.
Who knows what the future holds...but I'm being victimised and discriminated against by my own government.
I hope everyone gets their deserved PIP in order to survive but the more this torture continues I ask myself whats the point.

This system really makes me wonder who it is supposed to be helping.
We hear of claimants that have Fibro, Arthritis, Depression etc being awarded enhanced rates of both components and then we have people like yourself who are assessed as not having any issues and no impact on your life being awarded nothing or very little.
None of it makes any sense to me.

NelMac

None of it makes any sense to me either !

Is there anyone else here that has had Gamma-knife and then been diagnosed with Thyroid problems ?

It took a few more years to be diagnosed with 'Hypothyroidism'.

I was like a zombie.

A grey zombie.

Even though I'm taking Levothyroxine I feel like I'm living a 'synthetic' life.

I mentioned 'behavioural issues'.....I'm sure this is the 'root' of all this.

It's on that which I believe dictates who gets what.

If you've never put a foot wrong...you'll get disability benefits for a cut finger.

If you have a history of 'brushes with the law' your life will become hell, they'll drive you into oblivion and force you to contemplate ending it.

Meanwhile they cry inequality and injustice from the rooftops of Westmonster for/to solve their OWN problems.

The other real danger is that if you display a modicum of intelligence, regrdless of WHAT is wrong with you, it will be interpreted on a level that they deem as 'capable'.

I can't wait to snuff it just to NOT be part of this corrupt society.

NelMac

Pippa_Scope said:

Hi @NelMac, and a warm welcome to the community.

Thanks for sharing this with us, and I'm so sorry to hear about your PIP outcome. You mention re-applying, but are you appealing the decision?

Hi pippascope

I've appealled and appealled and appealled to the point they have told me I cannot claim ANY benefiits on the grounds of anything to do with head injuries because they say the Gamma-knife was succesful treatment !!!!!!!!

so, this time I've had to submit a FRESH CLaim that is based on how these inuries affect me and NOT for the actual condition(s) I've been born with and battled with all my life.

I constantly injure myself, tripping over things, doors close on my fingers because I forget what I'm doing WHILE I'm doing it !!!

Things like that.

I've nearly burnt the place down a few times.

I've told them a thousand times that they are trying to get me to LIE.

I will not do that.

I don;'t NEED to do that.

I was actually in hospital yesterday because of a fall which damaged my wrist and I can harldy move it now.

Meanwhile, as pointed out here, there are people with what appears to be very little wrong with them getting 'enhanced' rate pip ????

Seriously, we live in a corrupt society governed by biased criminals.

Pippa_Alumni

Oh I'm so sorry to hear that @NelMac, I can only imagine how difficult it must have been for you to deal with, especially on top of your physical symptoms too.

I wonder if there's any advice @Gill_Scope can offer for this time around?

NelMac

Apologies for my 'abrupt' manner. The stress of my situation is taking its toll.

I've recently been prescribed Amatryptaline and its beginning to affect me in an odd manner, so much so....I'm going to stop taking them. I only started taking them to get to sleep but they're affecting me negaitively...

A big thank you to everyone on here for some support.

On a side-note, I re-discovered something I typed in back in 2003 on a medical forum.....

https://www.medhelp.org/posts/Neurology/avm-information-/show/295668

Pippa_Alumni

Hi @NelMac, completely understandable. I hope today is as kind as possible to you.

Please do make sure your GP is aware of your issues with your medication and seek advice from them before making any changes. Hopefully they'll be able to offer a suitable replacement too!

Yadnad

Pippa_Scope said:

Please do make sure your GP is aware of your issues with your medication and seek advice from them before making any changes. Hopefully they'll be able to offer a suitable replacement too!

I gave up with that advice years ago. My GP is pill and testing happy. Every time I used to go I ended up with either more of the same or an additional load to manage the problems that the initial pills were causing or have more tests in hospital.. It ended up with 5 pages of medication every month and an average of 3 months over the year in one hospital or another.

Gradually I reduced what he had prescribed and whilst my issues are still with me, the side effects of the medication aren't.

NHS choices website gives good advice on medications.

NelMac

Hi all, sorry to hear your doc is 'pill happy', I find that most medication(s) mess me up and end up not taking them.

I've just got my decision for PIP and they've declined it AGAIN !!!

I changed my GP a while back and every appointment is now a different doc that requires a lengthy explanation so I've got no confidence in them now either.

So, they're now phasing out JSA which I've been FORCED TO CLAIM and will be FORCED to clain UC by the end of this month.

I honestly can't find words.

Headway brain injury charity issued me with a brain injury awareness card recently, I might go back and see them.

I can only assume you need to be actually DEAD before they'll grant a PIP claim.

(Or know how to lie professionally and put on an oscar winning performance for their 'assessor')....

What a charade.

poppy123456

Hi,

why have you been forced to claim JSA if you've been refused PIP? PIP is a completely different benefit to JSA/ESA and UC.

NelMac

When they cut my ESA just before they cut my DLA (indefinite award), I was told the only way I could continue to receive benefit was to claim JSA.

I've been told I'll not get ESA now because I've not qulaified for PIP !!!

It's a nightmare.

WHY did the NHS bring me back from the dead ?

What was the purpose ???

I don't get it.

NikolaAmygdala

Yadnad said:

NelMac said:

Hi Kevin and everyone else here. I was born with a cerebral AVM which caused me major concentration/memory/personality and behavioural problems, was put in care and have no formal qualifications as a result. When I had a bleed and was diagnosed it finally all made sense as I'd been telling people all my life there was something wrong but no-one listened. I just kept getting locked up. After gamma knife radiosurgery, I've had a craniotomy and then fractured my skull. My DLA award was indefinite and I've just failed to qualify for PIP after they cut my DLA.
I've just been re-assesed but I know it will not be in my favour. Meanwhile they are cutting jobseekers and are about to force me to claim universal credit.
Not ONE empoyer on planet earth is going to emply me. I've a 12 " scar and a hole in my head, suffer severe headaches and tinnitus and still cant concentrate. My left side is weak and I sooo look forward to the day I die I'm almost at the point of.....(I'l not say that here).
What can we do ?
This system is designed to make me feel what I'm feeling rightnow apparently.
Who knows what the future holds...but I'm being victimised and discriminated against by my own government.
I hope everyone gets their deserved PIP in order to survive but the more this torture continues I ask myself whats the point.

This system really makes me wonder who it is supposed to be helping.
We hear of claimants that have Fibro, Arthritis, Depression etc being awarded enhanced rates of both components and then we have people like yourself who are assessed as not having any issues and no impact on your life being awarded nothing or very little.
None of it makes any sense to me.

NikolaAmygdala

Hi there! You’re story is so similar to mine. Really feel for you and know how invisible this process makes us feel. How are things now? I have my PIP assessment on Thursday my second time. So degrading. Really hope you’re ok.

Chloe_Alumni

Hi @NikolaAmygdala and a warm welcome to the community! I am sorry to hear you have not had a pleasant time. Please do let us know how it goes on Thursday!