If you haven’t yet read all about how I applied for PIP, click here.

My PIP (Personal Independence Payments) claim was rejected.

The decision was made just 9 days after my phone assessment and the letter arrived 6 days later.

The letter is written addressing me personally and uses first person from my decision maker. This continues all the way through the letter, but begins with “I have looked at your claim and decided that I cannot award you Personal Independence Payment.”

I went into this process expecting to be rejected straight away and the DWP have proved me correct. In the interest of hopefully helping others applying for PIP, I am going to open up my decision letter to the internet, so that anyone who wishes can see what they are up against, because being prepared for the fight is crucial. If you have a condition that is not well known and not widely understood, you have to be prepared to make the assessor understand how your conditions affect your daily life.

I don’t want to put anyone off applying, but I want to accurately record the process as I experience it. Some of the comments that I read on my letter are quite upsetting and all are incredibly dismissive of my condition. I am accused of being dishonest about needing help with medication and my finances, because I could communicate my medical history to the nurse on the phone. Some things I’ve said have been twisted and some statements are completely inaccurate, so either the assessor or the decision maker has misunderstood what I’ve said.

I was honest about my condition, because I don’t need to lie about how difficult it is, just getting by every day. I manage, just. I definitely deserved at least a few more points in a couple of categories.

The whole written decision is around one page of A4. I have ignored the irrelevant sections of text where I scored zero, but accept the decision, as those bits are not worth dwelling on.

Here are the most important quotes from the decision:

“You said you have difficulties taking nutrition, managing therapy or monitoring a health condition, washing and bathing, communicating verbally, engaging with other people face to face and making budgeting decisions. You have no diagnosed eating disorder and are prescribed no build up drinks. You reported that although food has to be soft and room temperature, you are still able to eat and drink. You have no cognitive impairment which would affect your ability to manage these activities.”

“Although memory restrictions have been reported when managing medication and finances, you were able to provide details of a complex medical history during your assessment and displayed adequate memory for the purpose of this activity.”

“You reported that you bathe 4-5 days per week unrestricted. Although difficulty when washing and bathing has been reported, this is once a fortnight and not on the majority of days”.

“Although difficulty communicating due to pain has been reported, this is not on the majority of days, you explained that when you experience a flare up you will use text to communicate.”

“Although you reported difficulty when engaging with others you explained that this relates more to the environmental factors of a location such as temperature.”

“You explained that you feel that you do not engage with others much as you do not go anywhere due to physical restrictions.”

“I have decided that you can eat and drink unaided, either manage medication or therapy or monitor your health condition unaided and do not need to wash and bathe unaided, express and understand verbal information unaided, engage with other people unaided and make complex budgeting decisions unaided.”

“You understand your condition and know how to prepare, for weather changes. There is no evidence to suggest you experience psychological distress when undertaking this activity. I decided that you can plan and follow the route of a journey unaided.”

I scored zero points in every category, including mobility, washing and bathing, communicating, mixing with other people, dressing, managing treatments and eating and drinking. I scored two points, for my inability to read without an aid (other than glasses). My eye disease scored me two points and my trigeminal neuralgia scored me none.

The suicide disease scored me zero points.

I called the number on the letter, to request a Mandatory Reconsideration (the next step before appeal) and waited on hold for 20 minutes – notice how every step of the way includes a lengthy phone call.

I spoke to a lady on the phone, who wanted to know which of the categories I disagreed with the decision for and why. I read out which sentence of the decision I disagreed with and gave her the correct information about my daily life.

I told her that I can’t always eat food just because it’s soft. Sometimes I can go 4 days without eating.. Or leaving my bed, even using the bathroom.

I also told her that the fact I can recount my horrific ordeal of getting the most painful condition in the world, for a pre-arranged phone call about my illness, does not mean that I can remember to take my medication on time, or sometimes what I’m saying mid sentence.

I told her that I can’t wash my hair, or brush my teeth, and that, sometimes, I have to make do with a once over with a baby wipe instead of a bath, because I don’t have the energy at all.

I said that me understanding my medical condition and knowing what the weather forecast is, does not mean that I can go outside. That is absolutely baffling to me. I really can’t understand why the decision maker even wrote that this was okay on my letter.

I said that being able to text, which I also cannot do in a flare up, is not ‘verbal communication’.

Most importantly, I asked her to write a reminder note that I have atypical trigeminal neuralgia and that I am in pain all the time.

This process feels really degrading and I’m trying to open up, honestly, to people who are trying to find a reason to turn me away and have made a decision based on a mixture of one phone conversation with me and a look at my brief medical summary.

I honestly hate the way the letter is laid out. “I have decided that you can do this” over and over again is not a nice format for the letters and I have no idea who decided that this would be how they would address people clearly struggling with their disabilities and illnesses

I was told that my mandatory consideration will take approximately twelve weeks. I am either then approved, or I will appeal.

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