I can't live the life I choose without PIP

I cannot live the life I choose without Personal Independence Payments (PIP).

I need a carer to go out anywhere and, beyond local, basic shops (many of which I can’t access), I need a wheelchair accessible taxi. This carries an extra surcharge of £10 to £20 per trip in most areas.

I pay towards my care and need to provide all materials. Without PIP, I would not be able to even meet my basic bills. This is before you consider anything fun. My bills are so much higher than an average household my size.

You feel on edge all of the time

The whole PIP process is very disjointed. Many would think the Department of Work and Pensions (DWP) and PIP were the same department. No. If you communicate with PIP or the assessors, they don’t share any systems, so two calls are needed. When you’re already poorly, the energy to make several calls is a lot. Most days you just have to pick between the most important calls.

You feel on edge all of the time. When I was in hospital, they sent an assessor. Thankfully, he rang the day before so it didn’t count as me not meeting the appointment. Had I missed that call, it would have and I would have been sanctioned.

When I was discharged, I rang them to get a new date. I took a cancellation which meant I didn’t have to wait many stressful weeks. I had one home assessment, but then they lost my file. They rang me and told me that I had to repeat the whole home visit again. This was really stressful.

The assessments are stressful

I’ve had so many assessors tell me that “they understand”. They don’t. They can’t. Their ability to keep a roof over their heads is not dependent on this assessment. Not to mention the reality of living day to day with an illness and disability.

The assessors were scripted. Professional but formal. I found it hugely stressful and can’t imagine how anyone with mental health issues, developmental delay or dementia would cope. I was scared anything I said would be written down differently to what I meant. I was petrified I would have to appeal, and a tribunal would happen.

I’m housebound and allergic to the world. Stress alone could land me in A and E with a life-threatening reaction. This was completely unknown to the assessor when they arrived. It upset me for four months after my discharge. I cried with relief when I got the award letter because the practicalities of me attending a tribunal seemed impossible.

I did not trust the PIP process at all. Despite having Disability Living Allowance (DLA) for eight years, the whole assessment started from scratch. Mother’s maiden name, date of birth, everything. It’s almost like you have never claimed at all.

I felt like I was once again having to prove my illness and disability.

What are your experiences of the PIP process? Share your experiences on Scope's Facebook page or by emailing stories@scope.org.uk.