Frightened: I have recieved a letter saying I have... - Headway

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Frightened

charlii profile image
13 Replies

I have recieved a letter saying I have to go for a dwp assessment in jan for pip and I'm frightened. I am a year post SAH and hydrocephalus and have a vp shunt fitted. I see a physio who has me shuffling with a frame, a rehab doctor and my neurosurgeon still.

I have severe balance problems, can't control body temp, speech problems, memory problems, head pain and exhaustion as well as anxiety issues. I take a lot of medication including morphine and my MRI shows damage to my right front temporal lobe. I can't bear a lot of every day noises and have to wear earplugs and can't bear most lights and wear sunglasses even inside.

I have heard lots of horror stories about these people who do these assessments and I'm very frightened. Can anyone give me some advice please?

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charlii
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13 Replies
StrawberryCream profile image
StrawberryCream

Hi charlii

I am really sorry that you are having to face going for a PIP medical assessment and I can empathize and understand your overwhelming fear. It must be exceptionally difficult for you if you read the post I put on here yesterday about being awarded PIP without having to attend a face to face assessment. I am sorry as the timing of our completely opposite situations with PIP have come at the same time. Wouldn't be surprised if you feel some resentment towards me for having got the decision what seems so easily.

That had been my massive ongoing terror too ever since I struggled with the challenge of completing and submitting the form - having to attend the medical assessment. Apart from balance problems and my very obvious emotional instability my disability is the invisible frontal brain injury - dysexecutive syndrome. It sounds like some of your problems are going to be much more obvious - shuffling with your frame and speech problems. And your other difficulties would surely become apparent to the assessor. I am wondering whether or not you sent supporting documents with your form but I would also suggest you take any clinic letters with you as they should detail your difficulties so would support what you explain.

My thoughts are with you as I know had my letter been a DWP PIP appointment I would have been posting all my angst on here too. I still can't believe that I haven't had to go. I do feel an element of guilt for having posted all my happy relief but I did it thinking it would encourage others, like me, who initially were thinking it wasn't worth trying because we wouldn't be successful to give it a go because the PIP forms are definately more BI friendly than the DLA ones were.

charlii profile image
charlii in reply toStrawberryCream

Oh strawberry cream, please don't think that I bear any resentment towards you for not having to attend a medical. I am genuinely thrilled to bits for you! It's refreshing to hear good news xx

Hi Charli

I understand your fear, but I would think that as you have physio and neuro back up, it shouldn't be a problem as they could write something on your behalf. Also if you are shuffling with a frame, some of your difficulties are very obvious. I think the problem is with the hidden aspects.

Good luck

Kirk5w7 profile image
Kirk5w7

Hi, don't be frightened, they are just going to ask you to do some basic tasks and ask you about how you manage in everyday situations, can you wash yourself etc, can you prepare drinks and food for yourself, do you go out and if so how far can you walk, can you go up and downstairs?

This sort of thing, just be honest tell it like it is on your worst day, I can go up and down stairs but not repeatedly and safely. Repeatedly and safely are key words. I can cross roads but if I'm on my own it has to be at a crossing or if the road is clear in both directions because I can't look quickly from side to side or I lose my balance.

If you use a stick take that, I use one for balance, I don't need it in the home because there's enough furniture to hold on to, but it's my comfort blanket when outside.

These assessors are just ticking boxes and following guidelines if you don't agree with the outcome you can appeal, but I think you'll be fine xx

Take care Janet x

muzzyden profile image
muzzyden in reply toKirk5w7

Hi Janet I agree with all you've written down , especially the stick being a comfort blanket , I'm exactly the same when out , but as you say indoors ok as always something to hold on to . Take care Julia x

muzzyden profile image
muzzyden

Hi charlii , I agree totally with what the others are saying, I was allowed to take my husband in with me because of my memory problems he was able to fill in for me . Don't worry it will be fine x

charlii profile image
charlii

My physio who has to come to my home to see me has now given me a walking frame which I have to use all the time for balance and also weakness in my opposite side also caused by the SAH.

My husband sits in on all appointments as my memory is awful and halfway through a word my brain goes blank and I totally forget what I'm saying or what has been said previously.

Thank you for taking the time to reply everyone, it really is helping xx

aqua4 profile image
aqua4

Hi Charlii, I can't add any more advice than the others but just wanted to let you know how the support on here helped me when I went for assessment in Nov. to change to ESA from Inc. benefit.

Not had a letter from them yet with the outcome but not expecting one as it took 15 months from filling the form in to the actual assessment.

Hope it goes well for you. K

speak to Headway & see if someone can help you. They are great. Good Luck

I echo the previous response headway are brilliant - try not to worry

Matt2584 profile image
Matt2584

Hi Charlii,

The DWP want you to go to them to be assessed!? That is not right for them to do that. When I was assessed, they sent a seperate doctor around to my house. The DWP clearly do not understand people's problems, they are getting worse and worse.

I agree with the above comments, ask Headway for help.

MJ :)

charlii profile image
charlii

Headway can help me with this?

charlii profile image
charlii

Headway can help me with this?

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