Struggling – Nightmare of a system

PIP

Took about 4 months and many calls from a support to finally get my paper-based assessment assessed for PIP. I couldn't manage a face to face assessment and it was made clear it would harm me by professionals looking after me. I have ASD and severe anxiety, so I wouldn't have been able to explain myself properly anyway. [They even took my therapist’s words from a phone call out of context and omitted important information in the report/decision.]

Anyway - I was awarded some PIP but I asked for a reconsideration and a copy of the reports by letter. I said I would send further information shortly and my therapist prepared a letter to clarify her position which she sent because we didn’t want to risk the reconsideration without it.

I received the report last week and I wrote an additional letter with even more evidence because now I know what I am disagreeing with fully. I noticed they awarded me points for one activity citing difficulties I did not specify and I made it clear it was wrong and to remove those points if that was the only reason I was awarded for that activity. I wouldn't have been able to live with myself if I left that unchecked.

Unfortunately, I received the reconsideration before they receive my additional letter and awarded me 2 extra points but now they haven’t removed the other points.

I’m tired and overwhelmed by the long process. My health has taken a considerable knock and I feel on the verge of a breakdown. I don’t know what to do anymore, I can’t readily phone by myself or fix the mess. I want to appeal fully to be recognised for my difficulties but I am too anxious to seek representation or help further arguing my case.

ESA

To make things worse, the DWP decided to initiate my ESA reassessment. I cannot cope. The uncertainty and process is too complicated and too much to process.

Thank you for the reply Gordon and for the helpful suggestion that the ESA review could be considered good reason for a late appeal.

If I take away the potentially incorrectly awarded points, I am not happy with the result. I require access to certain services and the enhanced rate would passport me to those and I want an accurate award which reflects my difficulties with the activities. I want to live independently.

The also appear to have received my therapist’s letter to clarify her position but they still quoted the phone call, which was taken out of context and the full answers were omitted.

It is ridiculous that these people who probably don’t fully understand what ASD means are able to judge what is reasonable and consistent with the diagnosis. The diagnosis itself couldn’t have been made without my difficulties being established and evidenced.

My difficulties in communication are core features of my ASD diagnosis but they stated I am independent in this area. I am not even close, I require considerable time and clarification with communication, otherwise I miscommunicate which has had serious consequences in the past (example - not understanding a doctor’s question, miscommunicating my answer and being undiagnosed and losing access to medication until I was hospitalised with severe breathing problems).

Now that ESA has been put in to the mix. I am struggling to process any more. It is as though the reforms were designed to put obstacles in my way. I can’t ever move forward with the uncertainty and stress the DWP are bringing in to my life.

I wish they could see what it felt like to cry, panic and be physically sick at the sight of the brown envelope, and to have to sit with that dread of a new one every single day to the point where you cannot function or move the hours around when post is usually due. It is too much.