For anyone who has problems that effect the physically or mentally

While I understand that Cabbie it's about time they should realise that peoples health gets worse the length of time everything takes. And both the PIP decision and MRN decision shows they didn't read what was written ,and at my assessment the woman didn't listen to me the same goes for who filled the MRN when I answered all her questions.

About time it was disabled people who write the questions on the forms that are sent out and not able bodied people as they have no idea what it's like.

Wish one of these higher ups could spend a day in my body and see how they cope.

Cabbie I value you all your helpful advise . But I have been fighting for 34 years . There is no cure as my condition is due to a gene mutation and I will only get worse as I get older. Even my heart condition will get worse.

It just makes me so mad that people who have paid nothing into this country can get everything. And thousands like me have to fight for help.

Just to addd that, although you say your condition has worsened, Whiff, ( sorry to read that), the Tribunal is looking at the decision at the date it was made. Glad you have a solicitor to help you.

That's really good news that you have help from a solicitor, Whiff.
I'm very sorry to hear that things have got worse, though.
Would it help to look at it as "Yes, I do have a disability and I absolutely need it taken into account - by everyone ." ?
(Not in a self-centred way, just as an important fact ).

Right thought I would give you an update. The Brain Charity got in touch with the solicitors they use to help people prepare their case for tribunal.

Had a long chat with the solicitor who will be helping me. Sent her all the documents I have including copy of my PIP application,PIP and MRN decisions and at the solicitors request asked PIP to send me a copy of the health assessment that they carried out form PA4.

I will be sending the solicitor an email the weekend about how HPX has effected my life early and how it effects me now. Since I first asked for the PIP forms in March things have gotten worse and I have had to admit to myself I am disabled. Which has been very hard. As before my diagnosis in April I would never label myself disabled even thought doctors always have since 1988. I have meant hundreds of people over the last 34 years who I considered worse off than me. My husband was the only person who truly knew how bad I am not even my children know.

But it's time to put on my big girl pants and admit I am disabled not just weird as I thought before my diagnosis.

Thank you all for all your helped information.

Thank you Cabbie. I have phoned the Brain Charity the lady who is helping is in training but will ring me later today.

It is all explained fully here. Read right to the end.

You can also lodge your appeal online.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/apply-to-tribunal/

I am guessing that the Brain Charity would help you with your Grounds for appeal statement. But if they are delaying, you can just write a few lines( the form says one reason is enough at this stage ) and then work with them to do a full statement to submit later.

Whiff, I am very puzzled by what you are saying.
The SSCS1 form is the correct one to lodge an appeal. Normally it should be sent within one month. The address is on the form and is to HMCTS. There is a space to explain why if it is later than one month after the date on the MRN, but legally it can be accepted up to 13 months.
I am not sure of any reason why anyone has advised you not to send it. At this stage it is out of the DWPs hands.
Once it is with HMCTS, they gather all the PIP stuff from the DEP and send you copies of everything.

Cabbie I am totally confused know. I received the SSCS1 benefit appeal form 2 weeks ago. I phoned the PIP department to tell them I had it. They said as soon as they receive notification they would send the bundle out to me. I asked would it come from them and they said yes. Then I was to take it to whoever was helping me . Which in this case is The Brain Charity.

Please could you clarify for me who am I waiting for? You are a wonderful source of information. Thank you for that. ?

I send anything to the dwp by recorded delivery.

Whiff, I hope you have lodged your Appeal with the Tribunal (HMCTS ).You don’t need to say a huge amount under Grounds for appeal, just one reason is enough at this stage, as you can add more later. You should get an acknowledgement and can track it online. After about a month the Tribunal ( not PIP) will send you a bundle containing copies of all the information they have received both from you and from DWP re PIP. You can still send anything new you have got that they have not seen before, but no need to resend items sent to DWP already.
Lots of help with Appeals on AdviceNow website.

I agree that these adverts re PIP are wrong and so misleading. I don’t know who pays for them.

Oh!
I keep writing "Oh!"

It's enough to make anyone moan!
I really had an easy time of it, compared to lots of others, I know.

It's still horribly upsetting though, and really like a black cloud hanging over you.

It's good to know there are people behind you, though, if only in spirit.

MissA they keep saying you can claim PIP for this that and the other. So it means they have a flood of applications. But people who have to keep fighting for help keep getting put to the back of the queue and not being believed.

I know how hard you had to fight and that wasn't fair. I had my form for the tribunal 2 weeks ago still haven't received the bundle from PIP yet and yet they would have received there copy telling them I had registered and going to tribunal. Until I get the bundle I can't go any further. I know once I do I can get help from the Brain Charity them have to wait months for the tribunal.

It's so frustrating. I am one of those people who if I decide on something I get it done. Like all the adaptions I needed done in my bungalow and outside to make it safe for me.

I don't expect special treatment but to be treated fairly. I have been fighting for 34 years. My health has deteriorated during that time and will continue you to do so.

Just me having a moan.

I'm sure they do it just to stir things up, though I suppose, logically, someone who was floored with migraine (as I used to be as a child/teen) could argue the case.

It is awful, isnt it, seeing "those" brown envelopes coming through the door?

It's enough, seriously, to give a person anxiety, if they didn't have it before.

Papers at it again . Apparently people who suffer from migraines can apply for PIP. Arrr

Louisa thank you for the explanation.

Received SSCS1 benefit appeal form this morning. Was surprised I got the form so quickly but for some reason I feel sick . What a stupid reaction to a form. Let the Brain Charity know I had received it . So hopefully PIP had there's as well.

Whiff

The saga continues. Who is helping me from the Brain Charity gave me numbers and what to do. So now registered with the court they will send letter to me and PIP. Spoke to PIP once they have the letter they will send the bundle to me and the court. I know it can take months but I have patience. Waited 34 years few more months isn't going to hurt. Photo copied all the letters I had from consultants and PIP decisions and set to the Brain Charity as requested.

What annoyed me was I was on hold for PIP for over a hour that didn't annoy me but what did and want to say what is happening in the Ukraine is awful. But there was a recorded message that kept saying anyone of the Ukraine if they only have leave to stay here 6months they need to reapply so their PIP payments don't stop and anyone with 36 months stay don't worry your payments won't stop.

How can they be getting PIP it's making a mockery of the criteria you need to get it.

I know some will think I am being unreasonable but I don't understand why they can get it. Perhaps one of you can explain to me why.

Hope you all have a good day..

I wondered this too...I heard the same message when I was on hold to pip ....8 googled it....apparently emergency legislation was put in place when war broke out , i read it as...this meant that Ukrainians could apply for all benefits same ad UK national without having to go through the 'habitual residence testing '..... hope that makes sense.

The saga continues. Who is helping me from the Brain Charity gave me numbers and what to do. So now registered with the court they will send letter to me and PIP. Spoke to PIP once they have the letter they will send the bundle to me and the court. I know it can take months but I have patience. Waited 34 years few more months isn't going to hurt. Photo copied all the letters I had from consultants and PIP decisions and set to the Brain Charity as requested.

What annoyed me was I was on hold for PIP for over a hour that didn't annoy me but what did and want to say what is happening in the Ukraine is awful. But there was a recorded message that kept saying anyone of the Ukraine if they only have leave to stay here 6months they need to reapply so their PIP payments don't stop and anyone with 36 months stay don't worry your payments won't stop.

How can they be getting PIP it's making a mockery of the criteria you need to get it.

I know some will think I am being unreasonable but I don't understand why they can get it. Perhaps one of you can explain to me why.

Hope you all have a good day..

Aha!
Found you.
Glad you're going to get some help with the next stage, Whiff

Whiff

Good news today the Brain Charity are going to help me with my appeal at the tribunal.

That's great news Whiff, fingers crossed that this works out for you. It must be a relief and an comfort to have someone helping you with the fight. I'm sure they will have a lot of information and processes available that you may not be aware of.

Teacheranne I had a summary from my old GP as I only moved here 3 years ago but it was very basic it really only confirmed what tablets I am on. Did mention when my symptoms got worse in 1988 but it is only 3 words. I will ask my new GP surgery to see if they will let me have copies of letters from consultants pre 2017.

Whiff

Cabbie I did all that I sent every letter I had from GP, cardiologist and all the neurologists I have had. But only had copies of letters from 2017. As before than consultants didn't send patients copies of letters they sent to my GP. My health got worse in 1988 after seeing various specialists saw my first neurologist is 1992. I have been hitting my head against a brick wall for 34 years. Unfortunately had to the last 18.5 years on my own as my husband died aged 47.

Hopefully the Brain Charity can help me .

I found out recently that you can request a GP Summary from the receptionist at your doctors, there is no cost for it. Basically it is a summary printout of all your visits to your doctor or hospital ( if in the same NHS region) and goes back a number of years. Mine went back to pre 2000 but I guess that depends when your records were computerised. There are notes of any diagnosis, test results, medications prescribed etc.

That might be helpful for your appeal.

Thank you both very much for your support.

Whiff - that’s great news ?. Will keep everything crossed that this will get sorted soon for you and that you get the result you deserve x

Whiff, look up Benefits and Work. They specialise in UK Benefits, especially PIP and ESA.
Lots of information and help on their site.