No pip

[Jessie 107]

I have just been turned down for Pip, this has left me feeling a complete mess.
Despite me telling the assessor that I can't do any walking outside of the house, they are saying that I can walk over 50 metres! So I only got four points for mobility. The assessor also said he observed me walking a few metres with a normal gait, I got up because he asked for a tissue.
I had explained I can move around the house because I am able to rest when I need to!
Seems to me that they just out and out lie.
I got four points for the daily living, even though I can't do any cooking and need my daughter to wash my hair for me.
I will be appealing but the whole thing is just making me feel so stressed and I can't stop crying, this illness is bad enough with out all this crap as well, makes me feel like giving up.
My life couldn't get much worse right now.

 

[Molly98]

@Jessie 107 I really feel for you.

It is so stressful and so distressing when they literally lie about your situation in order to stop your getting the benefits that you deserve. It is a horrendous situation and one so many of us face not just with ME but for all other chronic illnesses as well.

It is about meeting targets for them, trying to deny as many people as possible, knowing that some of them will not be well enough or have it in them to appeal.

Several of us on here have gone through the mandatory reconsideration process and/or appeal process, it is such an added burden on top of this disease. Just know that you are not alone in being treated like this I have barely heard of an assessment where the assessor did not an outright lie. But it makes you feel awful, doesn't it. It's like your word stands for nothing.

I am going to tag @charles shepherd in here because I have noticed he has provided some very useful information to others who have faced this situation.

It is incredibly stressful but do appeal. An overwhelming majority get turned down again at the mandatory reconsideration stage, I have heard people get turned down before they even bother reading through what they have written, again because of targets, but a majority seem to be successful at appeal.

I am so sorry you have to go through this.
We are here for support .

 

[Mary]

@Jessie 107 - I'm so sorry you have to go through this too. I'm in the U.S. but went through something very similar when I applied for federal disability. I was turned down and was so demoralized I didn't even want to appeal, but fortunately came to my senses within the appeal deadline. I think they just initially turn down almost everyone, in the Uk and the US, hoping people will let it go.

It's unfair, it's not right but that's the way it is and hopefully it makes you feel a little better to know that you have tons of company. (BTW, I was successful on appeal.)

 

[hellytheelephant]

@Jessie 107 - I am so sorry you are going through this as well. The assessors DO lie. It's that simple, they don't listen or take notice of what you are able to do...and what you can't do. I took a friend in with me and she was apalled when I didn't get it. It seems that many of us get turned down routinely. I know it feels horribly personal, but it is nothing to do with you. It is a policy that is intending to put people off from pursuing it further.

I applied in Sept '16 and didn't get it, AND didn't get it after doing mandatory reconsideration ( which would be the next step for you). I am still waiting for my appeal date.

I should say that I spend a minimum of 80% of my time in bed, and that the council has adapted our bathroom into a wetroom, and providing a very expensive reclining shower chair. I have a walker, a mobility scooter and other aids. I was also told I can walk 50 metres- as if!
I have lots of good evidence including 2 letters from my supportive GP...and info from a private ME Dr....I think @Molly98 is right and they fail everyone. The only people I know who got pip straight off were transferring from DLA.

Try to remember: it is not personal, it is not about you failing to tell them anything, or not giving the right evidence. If you have not already done so I suggest getting your local citizens advice to help you from now on. It takes a lot of the stress and all of the paperwork off your shoulders...and the help is free. They will visit at home if you need.

Sending a supportive hug

 

[Jessie 107]

Thank you to all of you who have replied to my post, you have made me feel so much better it's so nice to have people who totally understand.
I feel calmer today, although still tearful, I can't seem to cope with any stress since becoming ill.
I will appeal as it's just not right to be fobbed off like that. When I told the assessor that doing daily tasks etc, brought on post exertional malaise which is a exacerbation of all my symptoms leaving me bed bound for days I thought he got it, but in the report it says 'you say you get PEM, but there is no evidence of musculoskeletal restriction! How can you prove PEM!! It's all just ridiculous and just annoys me every time I read it.
This illness is so unfair, when I see my doctor he doesn't understand it, benefits deny it and yet we are very ill, our lives devastated by it.
My god we are strong people to be able to cope with this.
Anyway, thank you all again your advice is much appreciated.
Regards
Jessie

 

[Skycloud]

Hi @Jessie 107
I'm so sorry this has happened to you, it's disgusting. Everyone is right - it's just the way the system is and not your fault. I hope you get help going forward with your appeal from the Citizen's Advice Bureau or similar.

I asked my sister who lives in Brighton and receives disability benefit (still on DLA) if there was any other organisation in addition to the CAB that can advise/advocate in Brighton and she sent me this info -

Possibility People - give advice re- benefits and have advocates. My sister says her personal experience with them is a mixed bag - the advocate she had for help with benefits was "as useful as a life belt made of paper" but their advisor she had for Personal Assistant application was very good.
tel: 01273 894050 10am - 4pm.

Maybe you know of them already

 

[PracticingAcceptance]

Cry it out! Let those emotions flow, and then let it go (emotionally). Give yourself a break before the next step to recover.

I've been keeping a diary for months to get evidence for PIP on the advice of Citizen's Advice. I've just heard from a nurse that PIP only gets awarded to people with severe ME and I'm only moderate. She said I ought to apply for ESA.

Have you already applied for ESA? It might be another possibility for you, as well as going through the appeals process. I know it's a lot of work to do all of this. Finding out that you've got a lot of work to do in order to appeal might be upsetting in itself to you... so work involved with trying to get another benefit might be too much for you. However, it might come through quicker. @hellytheelephant said she's been waiting more than a year for the appeal date.

Personally I'm angry that the Citizen's Advice person didn't even tell me about ESA. I feel like I've been wasting my time with preparing for PIP. If you can't get it, I probably can't - I'm probably about the same level as you - cooking, hair washing, though I walk for a few mins regardless of the weird feelings.

I'm angry that I wasn't told all the options. I still don't understand. I read somewhere that gov will try to persuade you to do Universal Credit but it's less money. I don't know who to trust. Anyone know if there's other options to go for? And the amount of work and time each one takes to get?

For weeks I've had to make the choice between working and preparing for benefits questions because of my limited energy. I'm sure it's the same with so many other people. I'm so angry that I've wasted my time. I'm going to try and get more informed before deciding what to spend my time on now.

 

[andyguitar]

Good luck with the appeal. Many,many people win. Lets hope you are one of them. ESA might be an option for you. God only knows how we have ended up with a society like this. The old,sick and disabled being treated like crap as a matter of course.

 

[Jessie 107]

Hi @Jessie 107
I'm so sorry this has happened to you, it's disgusting. Everyone is right - it's just the way the system is and not your fault. I hope you get help going forward with your appeal from the Citizen's Advice Bureau or similar.

I asked my sister who lives in Brighton and receives disability benefit (still on DLA) if there was any other organisation in addition to the CAB that can advise/advocate in Brighton and she sent me this info -

Possibility People - give advice re- benefits and have advocates. My sister says her personal experience with them is a mixed bag - the advocate she had for help with benefits was "as useful as a life belt made of paper" but their advisor she had for Personal Assistant application was very good.
tel: 01273 894050 10am - 4pm.

Maybe you know of them already

Hello Skycloud!,
Thankyou for giving me the information about the Possibility people.
I gave them a call after reading your post (I am in Brighton too) and I found them quite helpful.
It was explained to me what I need to do, they have started the form for me and will send it out for me to sign and send back off to Pip.
If I should have to go to Tribunal, they have given me a number for a organisation that will come to the house and help me with the appeal. It is a long process but I will do it but I won't be getting my hopes up this time then I won't be as disappointed.
So for now I will try and put on the back burner and get some much needed rest, it really did my head in yesterday.
I just hate feeling like such a burden on my Husband, the Pip would have helped with getting a cleaner, a dog walker and I could have helped with the shopping etc. Having nothing to contribute is very hard.
Anyway, hope you are okay, and thank you.
Jessie

 

[Jessie 107]

Cry it out! Let those emotions flow, and then let it go (emotionally). Give yourself a break before the next step to recover.

I've been keeping a diary for months to get evidence for PIP on the advice of Citizen's Advice. I've just heard from a nurse that PIP only gets awarded to people with severe ME and I'm only moderate. She said I ought to apply for ESA.

Have you already applied for ESA? It might be another possibility for you, as well as going through the appeals process. I know it's a lot of work to do all of this. Finding out that you've got a lot of work to do in order to appeal might be upsetting in itself to you... so work involved with trying to get another benefit might be too much for you. However, it might come through quicker. @hellytheelephant said she's been waiting more than a year for the appeal date.

Personally I'm angry that the Citizen's Advice person didn't even tell me about ESA. I feel like I've been wasting my time with preparing for PIP. If you can't get it, I probably can't - I'm probably about the same level as you - cooking, hair washing, though I walk for a few mins regardless of the weird feelings.

I'm angry that I wasn't told all the options. I still don't understand. I read somewhere that gov will try to persuade you to do Universal Credit but it's less money. I don't know who to trust. Anyone know if there's other options to go for? And the amount of work and time each one takes to get?

For weeks I've had to make the choice between working and preparing for benefits questions because of my limited energy. I'm sure it's the same with so many other people. I'm so angry that I've wasted my time. I'm going to try and get more informed before deciding what to spend my time on now.

Hello Loir,
Yes I have cried it out now, I don't want to make myself worse than I am.
I hope you are more successful with your Pip claim than I was. The diary is a good idea, I also keep a journal of how I am.
Yes, I have thought of trying to claim Esa, I was going to try after getting Pip but I am a bit wiped out now. I think I will have a go after Christmas. There must be some help we can get surely!! If it wasn't for my Husband I don't know what I would do!
I don't know if being married effects Esa, I will look into it, good luck to you if you are going to claim it. Thank you for your response.
Jessie

 

[andyguitar]

I expect most people apply for ESA before getting PIP. Get everything you can.

 

[PracticingAcceptance]

Good luck to you too @Jessie 107 . I don't have a partner or family support - you're so lucky to have that husband I hope you have a good rest now, with some good experiences to top up your supply of joy in your life.

@andyguitar do you know what else there is to apply for? Or where I could find out?

 

[andyguitar]

You could try looking on the Citizens Advice website. Without knowing what your circumstances are I cant say what you might be entitled to. But DLA might be worth a try. Income Support can also be applied for if someone is only able to work part-time. Also Housing Benifit/ Local Housing Allowance.

 

[andyguitar]

Sorry my mistake not DLA. That has been replaced by PIP. Ment to say ESA.

 

[hellytheelephant]

The first thing you need to find out is if you are in an area that already has/is rolling out Universal credit. That benefit is supposed to include income support and housing benefit. The thing I have really learnt from this experience so far is that it is almost impossible for the average person to fill out these forms. Even with help it is tiring, but a sympathetic outsider ( aka from CAB) will be able to judge what criteria you fulfil much better than you can. It is a sad fact that we get used to this 'new normal' and forget what a well person of a similar age is capable of.

@Jessie 107 - I totally have the same. Can't cope with stress and it makes me much sicker.

Hang in there and allow your nervous system time to calm down before you make your next moves.

 

[PracticingAcceptance]

Thank you @andyguitar I just found this:
https://www.scope.org.uk/support/disabled-people/benefits/check
That mentions all the ones you mention, so I'm going to do that questionnaire. @Jessie 107 when you're feeling up to it, maybe you'd like to do the same, if you want to consider other options.

@hellytheelephant my CAB lady had never heard of CFS/ME and was not understanding/acknowledging the symptoms I had even though I was experiencing them during the meeting. Even CAB I don't think are perfect or fully equipped to do these awful forms... the whole system is terrible. I used to work in government re-designing services... I would love to get my hands on disability services one day.

Apparently Universal Credit isn't as good... I read it on the Benefits & Work newsletter. I hope gov manage to develop it make it fair in terms of benefits given, and easy to use.

 

[hellytheelephant]

Thank you @andyguitar I just found this:
https://www.scope.org.uk/support/disabled-people/benefits/check
That mentions all the ones you mention, so I'm going to do that questionnaire. @Jessie 107 when you're feeling up to it, maybe you'd like to do the same, if you want to consider other options.

@hellytheelephant my CAB lady had never heard of CFS/ME and was not understanding/acknowledging the symptoms I had even though I was experiencing them during the meeting. Even CAB I don't think are perfect or fully equipped to do these awful forms... the whole system is terrible. I used to work in government re-designing services... I would love to get my hands on disability services one day.

Apparently Universal Credit isn't as good... I read it on the Benefits & Work newsletter. I hope gov manage to develop it make it fair in terms of benefits given, and easy to use.

@lior - yes, I do appreciate that we were very lucky to have a benefits worker who 'gets' ME...and that is probably quite rare.

 

[Skycloud]

Hello Skycloud!,
Thankyou for giving me the information about the Possibility people.
I gave them a call after reading your post (I am in Brighton too) and I found them quite helpful.
It was explained to me what I need to do, they have started the form for me and will send it out for me to sign and send back off to Pip.
If I should have to go to Tribunal, they have given me a number for a organisation that will come to the house and help me with the appeal. It is a long process but I will do it but I won't be getting my hopes up this time then I won't be as disappointed.
So for now I will try and put on the back burner and get some much needed rest, it really did my head in yesterday.
I just hate feeling like such a burden on my Husband, the Pip would have helped with getting a cleaner, a dog walker and I could have helped with the shopping etc. Having nothing to contribute is very hard.
Anyway, hope you are okay, and thank you.
Jessie

You're very welcome! As I said, my sister had 2 different experiences with their advisors/advocates as to how helpful she found them. I'm glad they gave you a contact number for help with the Tribunal if it should come to that. (Hopefully it won't, but for many it does. Fingers crossed!!)

I can imagine it really did your head in! I hope you have been de-stressing and getting some rest over the weekend.

I hope you are still able to get out often with your dog and your mobility scooter. (I noticed you mention that it would be a help to have a dog walker with PIP money)

And I'm ok, Jessie, thanks for asking

 

[nokmax76]

Sorry to hear about your situation Jessie 107. I hope you take comfort from all the advice and support you've got here and best of luck. I've never been on PIP but do know three people who have been awarded it at appeal and one of those was initially awarded less points than you (she ended up getting the standard rate for mobility which is better than nothing).

Sorry to hijack this thread a bit but as someone who has been through a couple of ESA cancellations and appeals over the last six years I'd just like to warn people that the government has yet again tightened the criteria for eligibility for this benefit earlier this year.

Before making a claim please read this handbook for government health professionals who conduct the work capability assessments.

https://www.gov.uk/government/publi...essment-handbook-for-healthcare-professionals

This will give you an idea of how to fill in the ESA form and conduct yourself during the WCA with regards to your health, so that you have the best chance of an award, even if it's being put into the dreaded WRAG (Work Related Activity Group)

Those who are actually working now, like lior, need to be especially careful when applying because any activity will be held against you. If you have supportive or approachable employer it's a must that you try to get some written record of how your health has affected your productivity.

Also I want to warn people that the DWP is sending forms to GP's regarding patient's work capability called ESA113.

https://www.gov.uk/government/uploa...hment_data/file/251339/esa113-interactive.pdf

They don't send these forms in all cases and apparently the GP's aren't required to fill them in but if they do they may actually harm your case. Especially, if your GP doesn't really know you or is away and the form is filled in by another Dr at the surgery just going off your medical notes.

Many people, including me, have been caught out by the stringent changes since the last update. Based on the new tough standards I don't think I will win my upcoming appeal as I'm starting from a cancellation base of zero points. So the least I can do is try to make sure that you're not.

 

[Skycloud]

Hi @nokmax76
The information you've posted will probably be useful for a lot of people - if you haven't already making a thread for it to bring it to wider attention might be a good idea.
Sorry if you have already, I've not checked due to energy levels.