Failing pips

seabreeze

Hi I'm new here very much need some advice..I fail pips and thinking of repealing it...I'm quiet up set and stressed out..

calcotti

Start here
https://www.citizensadvice.org.uk/benefits/benefits-introduction/problems-with-benefits-and-tax-credits/challenging-benefit-decisions/

Tori_Scope

Welcome to the community @seabreeze It's great to have you with us!

Thank you for posting about this. It's perfectly normal to feel upset and stressed out by the PIP process. I know that won't take your stress away, but I hope that it helps you to feel less alone.

What stage of the PIP process are you at?

seabreeze

I phone, filled out the form on line with someone as I've dyslexia, got called in for a face to face assessment and got letter saying I'd failed to get enough points...I have got a friend who is contacting cab and can fast track me so that will help..this morning I joined your group...all hospital appointments are on waiting lists but lucky I've got ot appointment this week! 

Alex_Alumni

That all sounds like positive steps @seabreeze hope your OT appointment goes well this week, let us know how you get on

Alex

seabreeze

Can you tell me if I can get help with the fog, it's embarrassing I keep forgetting stuff and I told GP but they just said what I already do...do puzzles and keep notes..my husband has been a saint...it's scary...

Tori_Scope

Do you know what might be causing your brain fog @seabreeze?

seabreeze

@Tori_Scope..I've got fibromyalgia, hypermobility spectrum disorder and chronic fatigue..so I believe I've fibro fog and I don't sleep much so it all ties in.

L_Volunteer

Oh, good old fibro fog! (not). I also have fibro so I can only empathise with you @seabreeze.

I can only imagine this is exacerbated for you with also having hypermobility spectrum disorder, chronic fatigue and not sleeping much.

I also rely on lots of notes, lists and alarms. It sounds really positive that your husband has been a saint but I can hear how it’s scary 

seabreeze

@L_volunteer hi and yes it's hard and scary...it's nice to be able to talk to people who have the same issues..we are looking into trying me with a little rota with things on to do...from art, meditation, and little things I can do to help my husband on good days

seabreeze

Right with help from my hubby we have wrote the letter to pips to ask to reconsider my claime...I can't believe half of the things they said...esp about me being dyslexic...she said there is no evidence as you can drive a car...now I'm sorry weather I have dyslexia or not that don't stop me driving a car and I passed my test years ago when I was 18 or 19... evidence she wanted and I explained over 30 years ago someone came to our school and got me to arrange blocks and read and spell things...that's it...over the years I've learnt to live with it as it's part of me...and I wasn't there for that anyway...I was there to find out how my health issue effects every day living with hypermobility spectrum disorder, fibromyalgia and chronic fatigue...ANYway I've done the next part and I'm willing to go further if the need arises...

L_Volunteer

I agree, it is nice to be able to talk to people who have the same issues @seabreeze. How are you feeling at the moment about the idea of trying a little rota?

I am wishing you the best of luck with PIPS. However, oh dear, some things that they say clearly show their lack of understanding.

Please don’t hesitate to let us know if you have any questions or need any support with it. We are all here for you and listening to you 

seabreeze

@L_Volunteer hi sorry for late reply I've not been on! Had a rough couple of days...just flair ups and not sleeping...yes I started a rota and started doing kitchen and it looks better...I did where I can reach and hubby did high and low and heavy stuff...it looks less clutter...however next mission would have been another room but not felt good...
Hope you are ok too

Hannah_Alumni

Hello @seabreeze

I'm so sorry to hear you are flaring, and that you had to write that letter to PIP. I agree with L Volunteer that it does show their lack of understanding. Hopefully you get a response back sooner rather than later.

I just wanted to check in, I know you have your Husband, but wanted to know if you have a good medical support around you too? I get the same feeling and urge of wanting to clear out everything room by room and do it all in one go but make sure you do take it easy whilst you don't feel well, lots of cups of tea!  

seabreeze

@Hannah_Scope thank you for your lovely message, I'm ok today altho fatigue...to answer your question Nope I don't have a good support medical wise...gp is no help and say we can't do anything you have to wait to see ot...they said the same for other referrals...I'm seeing ot now had first appointment and she has got me using the tape on painfull areas and said I need to start using a stick but they don't do them no more..she has referred me to a dietitian so I'm waiting on that...and people to assess flat to see what I need help with in the home...they have rung and we have done first part over phone...GP have given me nefopam for pain, voltarol gel for muscle and tendon pain, duluxtine for fibromyalgia, that's it..(dygonized with hypermobility spectrum disorder, fibromyalgia and chronic fatigue) 

Hannah_Alumni

@seabreeze I'm so sorry that you don't have that support with your GP. If you ever feel you need to change them / need advice with them, let us know

I remember you did manage to find a stick and it's awaiting decoration (I think you should wrap some tinsel around it, seeing as it's Christmas!). Although there isn't good support, I'm happy to hear you have things moving with adaptations and referrals. With the backlog with Covid, I always advise people to call the secretary of the department and ask if there is a cancellation list. If you have the flexibility, you may get a cancellation and get seen sooner 🤞

durhamjaide2001

Hi and welcome to the community. Are you a member of the member community? Another thing to keep in mind there is a whole section on PIP on the forum. 

seabreeze

Thank you @Hannah_Scope, if I could change GPS I would.
You never get to see your own doctor and you see different people every time. But I think I need to get all the referrals sorted first...
@durhamjaide2001 I am only on here not join anything else..I'm very weary on what I join and it took me awhile to get this far

Hannah_Alumni

@seabreeze Ooo if I could change GPS, you'll find me in the Bahamas but I get what you mean. My GP is the same, you just have to book in with whoever is available. 

Will keep my fingers crossed for you with the referrals 🤞

seabreeze

@Hannah_Scope your post made me chuckle lol...

Heard back from the people looking at flat yesterday...they have agreed I need a bath board, toliet raiser and handles and will let me no when they will be coming...they want rails put up front steps but they need to get promission...if that is denied then we can look into moving by going on council list...but we will see...

Tori_Scope

That sounds promising @seabreeze How are you feeling about it?