PIP and Spawn of PIP

I have PPMS and I was awarded the Standard Daily Living Allowance PIP back in December 2014; it is up for review in Spring 2018.

My mobility is steadily getting worse and I can only walk short distances using a stick. My right leg is becoming progressively weaker and drop foot tends to become very evident as my tiredness increases; nothing new to report there, of course. I have bought a scooter to get about more easily.

I took the plunge today and rang the PIP helpline. Having been held in a queue for some time and occasionally listening to messages subtly trying to put me off continuing with the call, I finally spoke to a person. I was advised that my PIP could be reviewed but that I would have to repeat the whole application process as if I was a new applicant. The system appears not to cater for reviews in a different manner; I had expected only to have to notify DWP of changes and to be reassessed only for those. What a trusting fool am I, it seems.

The thought of a full reapplication is daunting, even though I kept a copy of my previous form. I presume a number of you have been through such a process. Is it technically possible for the new assessor to rescind my existing award or am I being unnecessarily pessimistic? Is it better just to accept the award I have and put up and shut up? Perhaps I should be more positive.

I would like to hear about your experiences. Thank you for reading this.

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Hi Alun. I’m still on ESA and DLA but I’ve successfully claimed PIP for a friend who is no good at all with paperwork. The idea is very similar with awards for care and mobility (though the distances have changed). If you’re unsure about whether you’ll get any further change in payments, the DWP website has the criteria for each level of award.

The forms are worded much simpler but ask less questions so it’s up to you to record in as much detail as you can how you manage, what help you require and any aids you use. And they even want to know that you can’t peel veg and buy frozen etc as it all counts!!! I know this as I was also present for the face to face assessment.

So yes, if your mobility or care needs have changed it may be worth applying and in the meantime while you’re waiting for the forms make copious notes on every aspect of your day and remember that you may have good and bad days ago take this into account. And making copies before you send in forms is the way to go.

Take care, I hope this helped.


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Hi - I was awarded standard level PIP last December after a 9 month wait, during which time I had deteriorated from when I first applied, so I decided this summer to apply again. Now more savvy about the process, I got letters from my GP and my OT, but I wrote to them first more or less telling them what to put. You have to big up every difficulty and not be the brave little soldier! I sent the form off in August and it’s a 16 week wait, but I will persevere. It will be 20 months since the first form so in that time PPMS can cause significant changes. The main thing is to include the trivial things like can you prepare a simple meal? Yes, but as I have to hold onto things with 2 hands, I have to have help assembling pots and pans and ingredients. So then you big up the problem and you don’t think to yourself, oh well, I have found a way of managing. This condition is bleeping awful, and we just have to battle on to get the assistance we need. Good luck!

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Hi Alun, you’ve had some good advice… so I just want to say I think it’s completely disgusting that you have to go through the whole process again to report changes! I didn’t know that. I’m still on DLA and dreading the PIP application.

Have you heard of ‘Benefits and Work’ website? It’s a great site with step-by-step guides written by lawyers who are benefits experts. It’s about £20 to join for a year but worth it I think.

They also have a forum where you could ask your question. Lots of people on there have great knowledge and experience and also the experts answer questions… so I think it would be worth it for you.

Best of luck… and let us know how it goes.

Pat xx

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Another thing, last year after waiting 8 months with no assessment,I contacted my lovely Lib Dem MP, Norman Lamb. Amazingly, I got a call from Atos within two weeks. What a coincidence. So if you feel desperate, email your MPs office and see if they can give somebody a kick up the eighties!

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Thank you all for such useful advice.

I will make sure that I emphasise every difficulty and provide suitable examples.

Pat, I have heard of the Benefits and Work website but I have yet to sign up. I will check it again very soon. Lynda, thank you for your advice about consulting your MP. We should make them earn their 10% pay rise! I agree that Norman Lamb is a decent MP, and you are very lucky. I suspect my Tory MP would suggest that I buck up my ideas and stop cadging off the state. Cath, thank you for your sound advice which I did find most useful.

I should receive my forms any day now and commence the whole process once again. I promise to let you know of my progress. I am seeing my consultant neurologist very soon and I will add him as a reference; once has seen me he will be fully cognisant of my current condition.

I am still managing to work 20 hours a week spread over four mornings but I only work two consecutive days. Wednesdays and the weekends are welcome recovery days. My employer has been very considerate and supportive. As I am 61 I am considering early retirement on medical grounds. I have seen the organisation’s Occupational Health doctor who thinks I would be successful. Although I am prepared to continue working, as it is office based, I do begrudge giving up the best part of my day to the job; I am very tired in the afternoon and only start recovering by the early evening. It takes me quite a time to get ready in the morning which also adds significantly to the length of my day. I apologise if this sounds like whinging as it was not meant to be; I am generally positive and find plenty of enjoyment from life.

Thank you all for your support and I also wish you all the very best.



I was awarded standard rates in Jan 2014 I was only diagnosed with ms sept 2014, I did a change of circumstances, I waited 12 months to be reassessed as they went off old form I filled in new form, my dr is great atos contacted him then a OT came to assess me took 20 mins got letter a week later was awarded enhanced on both care and mobility for 10 years.

bare in mind I’m really bad don’t leave house after I had a uti which I ended up in hospital for 3 weeks then rehab for 3 weeks, I am hoping I improve mobility wise 10 years is max award they can give you I sent lots of evidence in too.

Hope this helps.

Marie x

Some good news, I think! I reapplied a few months back (see earlier posts) and got a call this afternoon from DWP to say I had been paper assessed, that is, no interview needed, and would get the higher allowance. I didn’t like to ask them to be specific, as am hoping this will enable access to Motability but all will be revealed when I get the letter. So it WAS worth all the hassle of doing the form again, and I really think the letters from the OT and GP helped, so go for it, Alun, and good luck.


Excellent news Lynda, fingers crossed you get higher mobility. Most people who get higher also qualify for blue badges too which make a big difference when you have to go out when fatigue has taken over. Keep us posted please.

Cath x

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Thank you Lynda for the update and I am very pleased with your result. Filling in the forms and collecting supporting evidence is enough in itself without another interview with ATOS. Your news is very encouraging and your careful preparation has paid off.

I am still waiting for my forms after nearly two weeks. I did ring them again today and was told that my request was in a queue and the form would be sent out shortly, the usual patter. The female voice used by call handling software is so smug and infuriating that it requires a monumental effort to be polite to the poor person who finally answers.

I will update when I receive any significant news.

Best wishes


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Hurrah! Letter of confirmation arrived this morning, that I have both components at the enhanced level, backdated to when I first asked for the forms in mid March. They seem to be so much quicker now than they used to be, you just have to be patient with the system.

Alun, remember that assessment is based in specific criteria, points awarded for your answers. You have to score 12 to get the higher rate, so bear that in mind. I really think the OT report helped. Although it was a bit demoralising to read, she did make it clear that I was struggling. Contact me if you think I can help in any way.