Feeling crushed: On Friday I had... - Pernicious Anaemi...

Pernicious Anaemia Society

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Feeling crushed

Penni profile image
12 Replies

On Friday I had 2 letters, the first from my Psychology Practitioner that I've been seeing monthly for the last 3 years has now left my surgery and the second was from PIP (personal independent payement) saying that there is nothing wrong with me and that I will not be getting any help, even though my house has several mobility aids and I'm under the care of various people including OT's!

I spend more than 50% of the week locked in my house in my pj's with my comfort/secuirty item that I've had for 35 years. This doesn't matter to PIP nor that due to my health issues my 62 year old mum has to carry out basic tasks in my house because I am unable too.

The person I saw for my medical did not believe that a form of anemia is life threatening and that I was making up all of my symptoms, including being on fentynal for the nerve pain in my spine, lower legs and feet. What is the point of a benfit that is meant to help out disabled people make them feel like that they'd be better off no longer being here?

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Penni profile image
Penni
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12 Replies
Sleepybunny profile image
Sleepybunny

Hi,

If you have a diagnosis of Pernicious Anaemia, could be worth joining the PAS.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

They can sometimes intervene on behalf of members and at very least should be able to pass on useful info.

PAS list about membership mentions advocacy for employment and education issues. Not sure if advocacy is available for benefit issues.

pernicious-anaemia-society....

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

MPs

Have you considered contacting your MP?

parliament.uk/mps-lords-and...

Disablity Advocacy

seap.org.uk/

disabilityrightsuk.org/how-...

nhs.uk/Conditions/social-ca...

I am not medically trained.

Penni profile image
Penni in reply to Sleepybunny

I am already a member of the PAS so i will contact them tomorrow, I am also going to visit my local CAB this week for their help

Polaris profile image
Polaris in reply to Penni

Good luck Penni - it's unbelievable how heartless the system has become. Please don't lose heart - I've heard that it's almost expected now that you have to appeal before reinstatement.

rosebush1953 profile image
rosebush1953 in reply to Sleepybunny

Sometimes a letter to the local newspaper can highlight the problem

Gambit62 profile image
Gambit62Administrator

Unfortunately you are far from alone in what you are experiencing in relation to PIP - There is an appeal processes - and a lot of people do manage to get decisions reversed upon appeal. As Sleepybunny says - contact the PAS and talk to the CAB - both of whom should be able to provide you with support in getting through the appeals process.

MiniMum97 profile image
MiniMum97

Absolutely - make sure you lodge a mandatory reconsideration within one month of your PIP decision letter. Ask for copies of your application and assessment and any other evidence that they based the decision on. Ask them not to make a decision on your MR until you have had a chance to respond. You usually get a month from lodging to respond in full. Include medical evidence with your full response and it is important that this supports what you can and can't do rather than your diagnosis (look at the PIP questions, this is what they will be looking for) as diagnosis is largely irrelevant. If you are under an OT then they should be good for this. Supporting statements from carers can also be helpful. It will be your word against the assessors so you need something independent to back up what you are saying.

If it isn't successful, appeal. It is a long process but majority of decisions are overturned on appeal.

Sorry this is happening to you, how people claiming disability benefits are being treated currently is bloody disgusting.

For future reference it is a good idea to record PIP assessments.

pitney profile image
pitney

So sorry you are having to go through all this Penni , I would get in touch with PAS and ask Martins advise, please dont lose hope I know how dreadful some of the symptoms can be and your just made to feel worse when your not believed. Can you appeal this decision ? Please take care and all best wishes

topazrat profile image
topazrat

Argh I hate PIP! Both of my children were on lifelong DLA and last year the youngest was called in for an assessment to change to PIP. Well, to cut a long story short, she was refused, even though she has various life long problems. Their judgement was that because she can hold down a job (just) then she doesn't need help. The person taking the assessment even asked when her (genetic) problem started. Erm, it's genetic, she was born with it!

The system stinks! I'm dreading a letter saying the older one needs reassessing! I know a severely autistic girl locally, who was turned down recently because 'She is too intelligent'! So, she can't go out alone because of her condition, or function normally, but that's ok, cos she's clever!!

19191919 profile image
19191919 in reply to topazrat

Hope you asked for reconsidration for the first one/appeal.

topazrat profile image
topazrat in reply to 19191919

I wanted to, but my daughter decided that she'd jumped through enough of their hoops already and didn't want to appeal. As she's a responsible adult, there wasn't much I could do.

The older one is a different matter, she can't work because of her problems, so if she gets turned down, we will definitely appeal - I did with her DLA. They turned her down and then we got a lifelong award for both care and mobility after appealing.

19191919 profile image
19191919 in reply to topazrat

Good luck. I know how your other daughter feels and as you say when they are adults its entirely their choice. But if her condition worsens I think she can re apply if she wants to. Its a totally different benefit PIP and a functional test.

19191919 profile image
19191919

It seems to vary so much depending on who does it. Totally agree on need for independent evidence an OT would be good, and the GP. The new benefit is very different to the old one and points based. Make sure you meet the time limits for asking for a reconsideration/appeal. Very best of luck x

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