My PIP Journey

“My name is Reshma and I have Usher Syndrome.  In the last few months I went through the process of applying for the Personal Independence Payment (PIP).  It was a difficult journey, but I got the benefit at the end.

Like many people with Usher I struggle when the lighting is bad. I can’t go out alone when it is dark and it takes time to adjust to changes in lighting.  My field of vision is very narrow.  I don’t see below my chin.  I do try to get on with my life, but of course I struggle with many basic day-to-day things.

When applying for PIP I had to go to a face-to-face assessment.  The assessment centre had nearly perfect conditions; quiet, good lighting, no clutter etc.  I could function very well there and this was used against me.  In those perfect conditions I could hear the assessor and could see where I was going, so he did not even think of asking me about the difficulties I had.  He did some tests, mainly by flicking his finger in front of me to see how narrow my field of vision was.  Then he said I was perfectly able to do everything.  I tried to explain the fact that I can’t see anything when it is dark and that I can struggle to distinguish colours.  He just told me that I was making it up.  He had my certificate of vision impairment in the file and it never occurred to him to question why a consultant would register me if I was fine. I spent 20 minutes in the room with him and I felt I wasn’t given a chance to say anything about the impact of Usher, he just was not interested.

A few weeks later I received a letter from the Department for Work and Pensions (DWP) saying that I did not qualify for PIP.  I was really angry and upset.  I got in touch with Sense and they helped me to ask the DWP to look at their decision again.  Sense sent a statement to the DWP describing the impact of Usher.  After this they awarded me with the mobility component of PIP, but again nothing for daily living.  I felt this was not right and decided to appeal to the tribunal.

I had some advice from RNIB before the tribunal hearing and my representative wrote to the tribunal explaining my situation, but I ended up going to the hearing alone.  It was scary, I had many doubts about it, but I decided to go.  At the end of the day I know my condition best and I thought that I could just try to explain how it affects my life.

When they called me, I was so nervous.  On the way in I bumped into some chairs and it made me feel even worse.  I then could not hear the panel well, the window was open and there was too much background noise.  I asked them to speak louder and I was able to tell them how hearing aids work, the fact that they amplify all sounds including background noise.

That tribunal hearing was the first time when I felt someone was listening to me.  They asked me questions about the difficulties I had and although it was embarrassing and very uncomfortable, I did my best to tell things as they were.  I know it is not easy, but this is the only way to get them to understand what we are going through.  We look much more able than we are and this is probably why PIP assessors don’t believe us. I was lucky this time, the tribunal wanted to listen and they soon realised that I face difficulties with almost everything I do.

I spent almost 2 hours in that room.  When it was over I felt good, I was actually able to tell my story.  I also got my daily living component as a result.

It is frustrating that we have to go through such a long process to get the benefit we are entitled to.  I need PIP to help me get out of the house and just live a normal life.  Why does the DWP put us through this hell, why don’t they believe us in the first place?  I don’t know.

My advice for anyone applying for PIP is to be strong, don’t give up and tell things how they are – even though sometimes it can be hard and embarrassing.”


You can find out more about PIP on Sense’s website

Sense campaigns to ensure better quality of PIP assessments.  We want to hear about your experiences with PIP.  You can share by filling in our PIP survey or getting in touch with Svetlana Kotova at Svetlana.kotova@sense.org.uk

Information about things you need to remember to ensure you get the correct award of PIP can be found in our oldblog here.

If you have a specific query about PIP or disagree with your PIP decision contact Sense’s Information and Advice Service on  0300 330 9256 or 020 7520 0972; Textphone: 0300 330 9256 or 020 7520 0972 or Email: info@sense.org.uk

Reshma Varsani

Author: Reshma Varsani

A deafblind woman supported by Sense

1 thought on “My PIP Journey”

  1. I love what you are doing on your blog you have been so strong and brave,it’s also good how your helping others and teaching them about Ushers Syndrome.

    If you need anything doesn’t matter what time we are only next door xxx?

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