Applying for PIP: Our experience – part 1.

Husband was diagnosed with Asperger’s Syndrome in August 2015. After receiving the confirmation, we knew this could help us as having the diagnosis confirmation would mean he could get more support such as through Remploy or through seeing a Disability Work Adviser at the *shudder* Jobcentre *shudder*. However it was not until this year that we were made aware by a family member that Husband might be eligible for PIP as I do support him with a lot of daily living activities and help him with his mobility.

(As an aside, from my experience, government agencies will not tell you you may be eligible for anything. You have to investigate this or find out for yourself, nothing seems to be just handed over in terms of information and advice. I also feel that they make the process of applying for these things so convoluted to deliberately deter people from applying. If Husband had not had people to help him with this he would not have applied for this – maybe that is the strategy of the current government?)

PIP or Personal Independence Payments are there to help people manage the costs of having a long term illness or disability. It’s comprised of two components, a daily living component and a mobility component.

Calling the PIP hotline:

You start the process by ringing the PIP hotline and asking for a form. I rang the PIP hotline on the 10th of May on Husband’s behalf as he gets flustered when asked a lot of questions as he needs time to answer. I was on hold for about 15 minutes; they are only open until 6pm and I get home from work at 5pm so I can imagine many people were in the same boat as us and trying to call before they closed.

Before you ring the website asks you to have some details ready; date of birth, contact details, your National Insurance number, your bank or building society account number and sort code and the name, address and phone number of your doctor or anyone else who they can contact about your condition. This did not apply to us as such but they also ask you about if you’ve stayed in a care home, hospital or been abroad for more than a certain length of time in the last five years.

The lady who answered had to confirm with Husband I was allowed to make the call on his behalf and read the declaration to him, but apart from that I did most of the call. I am glad I did as the lady who took our call was quite short with us I felt and did not seem that interested in what we had to say. I get that she probably has to follow a script but I would have felt quite intimidated if I’d have to deal with her again. The call took about 15 minutes to do.

At the end they said they would send the form to us in the post and they gave us a phone number to ring if the form had not arrived within two weeks.

The PIP form:

Our form arrived on the 23rd of May. Look at this beast of a form! Look at it!

Allllllllllrighty then.

As it’s quite complicated and detailed, I dedicated time to do at least a page of it a night. Some of the pages do not apply to Husband so can be skipped (like helping with toileting or mobility issues).

If I had known about this I would have kept a log of the things I have supported Husband with, really kicking myself for not doing this now. Ah well, hindsight and all that.

Lots of tick-boxes but you do have a chance to add additional information.

We were advised by different people to really labour what would happen if the support to do these everyday activities were not there and how this would impact him and his ability to live independently.

While I was working on it, I suddenly had a brainwave. When Husband was being assessed for Asperger’s Syndrome, I realized that the support tutor he used to have at college was still working there (I now work at the college he used to attend), and so I asked if she would write a letter on his behalf regarding how he presented as a teenager and what support she had. She wrote us a great and supportive letter, which I kept and now added a copy of to our PIP application. I also added copies of the diagnosis paperwork the psychiatrist sent us.

The support of Husband’s family was invaluable for getting the form done, especially husband’s sister whose little boy was diagnosed with ASD about three years ago. They applied for PIP for him so she read through what we’d put and made a lot of useful suggestions based on her experience. Husband’s mother also had a read and came up with a lot of helpful ideas.

Sent the form off on Tuesday the 6th of June, so pleased with myself!

The time between sending the form off and being assessed:

But apparently it would not be all plain sailing, even though we’d ensured we evidenced everything:

Oh joy.

Great. But. I sent it back using the prepaid envelope and got Proof of Postage at the Post Office Counter to prove I sent it, plus I photocopied the form once we had filled in, because, you never know! I am a great believer in hard copies.

Husband had a text on Monday the 12th of June to let us know they had received the form. We then had a letter from the DWP on the 23rd of June to say that Husband’s PIP claim would be assessed by Capita. I hadn’t even heard about this company before this, I had only heard about ATOS and the things I had heard about ATOS were not good so I was bracing for a fight.

We then had a letter dated the 19th of June from Capita to say that they had been handed Husband’s claim from the DWP……and that was what we heard for a long time. I read and reread the letter to check just in case if we were supposed to have done something, but no. I sent an email to Capita just to query where they were at in terms of assessing Husband’s claim on the 17th of August. I don’t mind waiting as claims are backdated but found it odd that we hadn’t heard anything at all in such a long time.

On the morning we were flying to Norway on the 21st of August we had a letter to say they had to do a face-to-face assessment of Husband and that this would take place in our home on Monday the 4th of September. The letter asked us to ensure we had two kinds of documents ready when the person arrived to assess Husband to prove his identity.

We then had a letter a week before reminding us that Husband had the appointment and where it would take place. Husband also had a text from the DWP to remind him of his appointment. I will ring Husband’s sister today and ask her about some hints and tips regarding the assessment as their son was awarded PIP once he had a formal diagnosis of Asperger’s, and what we can expect from the assessment. Fingers crossed for Monday.


As this has become more of a saga than I anticipated (well, who am I kidding. I knew I was wrong to think these people were genuinely interested in us and wanting to help us), I have decided to list the rest of my posts regarding our PIP quest here, in case you want to read them:

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 4.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Applying for PIP: Our experience of applying for PIP, Part 5.


Applying for PIP: Our experience of applying for PIP, Part 6.


13 thoughts on “Applying for PIP: Our experience – part 1.

      1. My friends have all got transferred to PIP, some have got the same level they had on DLA, some have got less or have to be assessed more regularly. A family member with autism lost all of his though, it looks like PIP focuses more on the physical over any other disability so try and think what he physically struggles with and stress it.

  1. Reblogged this on Little Sea Bear and commented:
    Today, I was going to post an update on my Mandatory Reconsideration (MR) and applying to tribunal. It’s all written out explaining that I have been awarded 8 points in Daily Living after the MR appeal(a surprise considering their stats) but that I am still going to the tribunal. Only I got scared to post it in case it affects my outcome when it does go to tribunal.

    So for now, here’s another person struggling with PIP. Silveryew talks about her experience trying to get her husband onto the PIP system. Go check it out.

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