Got PIP award!: Hi everyone. Just... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Got PIP award!

Nat1969 profile image
12 Replies

Hi everyone. Just wanted to share my good news. After a long wait, I had my ATOS consultation on 8th August and have just received notification that I've been awarded standard components for both Daily Living and Mobility.

I really didn't think I would get it ... first try too ... but I sooooo really needed and wanted it. They're even back-dating to last year when I first claimed.

I shared with my friends and family and although they were pleased, I think only you guys would truly appreciate it fully. Anyway, I'm feeling very happy today and wanted to share. A bit better news than "our" normal conversations, hey!

:-)

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Nat1969 profile image
Nat1969
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12 Replies
Sal0712 profile image
Sal0712

Well done you, that's great news. These invisible illnesses are the hardest things to explain to others, as they can't see or feel what we can! So pleased for you. Must be such a weight off your shoulders!! X x x

Lure2 profile image
Lure2

Hi, Congratulations to your prize (?) I have tried to understand but it must be that because I am from Sweden the DLA and PIP are mystery for me.

Would you please try to explain. I would like to know what my congratulations go to........-

Best wishes from Kerstin in Stockholm

Nat1969 profile image
Nat1969 in reply to Lure2

gov.uk/pip/overview

There is a good description of the above government site Kerstin.

DLA - Disability Living Allowance

PIP - Personal Independence Payment

They're phasing out DLA for the new PIP. Both are disability benefits.

:)

Jade profile image
Jade

That is amazing news and crate I hear. Can you tell us do you 'only' have Hughes? Did you win it on any other grounds. If it's not rude are you severely disabled physically by it. I ask as with an invisible illness it is hard. I know people who have Parkinson's disease who have been turned down

Nat1969 profile image
Nat1969 in reply to Jade

I can only comment on my personal experience Jade. I went with my sister as support and described how I feel and my day-to-day activities and issues. it was a very down to earth, relaxed "interview" more like discussion with a very nice lady from Atos. She made lots of notes and at the end I had to do a few movements, i.e. squeeze her hands, arm movements, etc. I did get upset a couple of times though - I always do when I have to describe "stuff". It brings it to the forefront and I don't particularly like discussing how I feel/manage.

I was diagnosed with Lupus at age 20 and I am now 45. In the 25 years since, I have picked up more problems - APS, Thyroid, CKD, Anaemia, rheumatism. I used to have more good days than bad days (back in the day) and worked full time for years. However, over the past 5 years or so, it got worse and now good days are rare. Although, I think I pushed myself more often than I should - sleeping alot when not working and not doing anything else as I had to be OK for work. I think "we" tend to have high pain thresholds and handle our illnesses better as we're so used to putting up with alot.

I now work part-time and very local to my home - so no long commute to work on top of a full day.

I can only be thankful that I received the award - but I do know it can be very difficult.

daisyd profile image
daisyd

Really pleased for you, lovely to hear some good news

Jade profile image
Jade

Thank you for sharing that, you sound like you deserve the award but were very lucky with the lady you got. I do hope one day I will get a nice lady.

Lure2 profile image
Lure2

Thank you for answering. I understand. Now I can say CONGRATULATIONS to you. Well done! It must be difficult to receive that price.

Kerstin in Stockholm

mickt profile image
mickt

Good news ,ive been awarded standard allowance for daily living ,Ive type1 diabetes ,Addisons disease,vasculitis gca /pmr ,im on warfarin for aps also got vitiligo.Ive been pensioned off at 51 from my job ,got awarded top tier of pension thank god ,lucky to have one I know!.It has been a difficult year for me and my wonderful wife ,whom without don't know if I would have coped.Good to hear of success stories with this pip benefit .!

DataOdyssey profile image
DataOdyssey

Congratulations on your award! I'm so happy for you, and pleased that it is actually possible to get this after all. Hopefully, one day, I might be similarly privileged. Right now, despite the pain and agony of living day to day with all my various invisible illnesses, I'm still holding down a fulltime job (at great cost to my well being - but it's my very silly choice - I'm just being stubborn). I'm on painkillers 24/7, and have no quality of life. Maybe in a year or two (I'm 54 now), I might have to throw in the towel and apply too. Take care and good luck :-).

dburk profile image
dburk

2 weeks ago I had PIP medical, previously I was on DLA, High rate mobility, middle rate care. I am now receiving enhanced mobility, enhanced care, they were very understanding of my illness. I had CVA that left me vision impaired, multiple TIA's, memory and cognitive issues, I would give anything to have my career and independence back... Right now I am blinking and breathing... Live for today!

Lure2 profile image
Lure2 in reply to dburk

Hi, You have written on a 2 year old question and I can see that you have never put a question on our site but you have been a member since 2011. You have written nothing about yourself and when you were diagnosed with APS.

I really hope you have got an APS-Specialist and that you have your blood enough thinned as you have got so many neurological symptoms (like me). I do not know what CVA is in this moment when writing to you.

Our members here know a lot and I am sure we could give you advice and support.

Best wishes from Kerstin in Stockholm

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