I shouldn’t have to go to court 3 times to get the PIP I need

Wed 11 October 2023

Bethen Thorpe

I live with relapsing remitting MS and I’ve been on Personal Independence Payment (PIP) since shortly after being diagnosed in 2014. I’ve now had three assessments.

In 2014 I lived in Highgate. The Department for Work and Pensions (DWP) sent me for my PIP assessment in Chelmsford, 40 miles away. I didn’t even question it! My partner Bernard had to go with me.

I got the report back and they said I was ‘holding a bag’. So I was awarded absolutely nothing. It makes the assessment nonsense. I went to tribunal in 2015 and was awarded the highest rate of PIP.

Help from a friend, plus legal assistance

For the second assessment in 2019 my Dad came with me – this time he was carrying my things. But they said I didn’t have any problems, and I wasn’t awarded anything.

I’m very lucky as a friend is a lawyer. They helped me take them to appeal and tribunal again.

I was awarded the enhanced rate for both daily living and mobility. They put in the notes that it was ‘inappropriate to fix a term’ for my next assessment. My friend said it was the best result we could have asked for.

Another PIP assessment

I got a letter earlier in 2023 to say I needed to have another PIP assessment. I wasn’t expecting it. This time it was over the phone at 9.30am on 23 May 2023. The time came and went and there was no call. Someone then rang me and said ‘can I phone you back in a bit – I’ve just been given your file?’

My lawyer friend was patched into the call. They didn’t take much of her input.

I felt awful in the build-up, I was really worried. My friend helped me to get my paperwork together beforehand. I had it open in front of me so I could answer questions, but in doing so the assessor decided that I had ‘no problems with interpreting signs’. I can barely see – everything is blurred. Also, because I knew what medication I’m on, I was also scored down for being able to understand complex information. The discrepancies are ridiculous.

I had to appeal the decision again

I put the phone down and I knew what the outcome would be. The decision came through on 21 June. They’d given me the standard rate. Originally I had the enhanced rate, which was £691 a month, and it was reduced to £590.20.

PIP is meant to be a passport benefit so disabled people can do other things that could help. But it’s a pathetic amount of money.

I was also awarded 0 for mobility needs (in the previous tribunal I was given 20). But how could they tell over the phone?

We had to go to court again. I said to my friend ‘I don’t want to do it’ and she said ‘yes you are’. Her support was so important. Again, I won the tribunal and was awarded the higher rate.

The stress of my PIP assessments has had a huge impact

I’ve had quite severe depression and it gets much worse when experiencing the stress of the PIP application and assessments. The process is overwhelming and also needlessly intrusive. I’ve been upset about it as I shouldn’t have had to go to court three times!

I try to be pragmatic and sensible. But it isn’t fair that I have to keep being questioned. I’m getting older and my MS is progressing. Further down the line are they going to take even more away? I know my friend would be reluctant to let it slide as she thinks it’s outrageous as well.

I feel there’s been this awful judgement that what I’m experiencing, as a result of my condition, isn’t real.

What needs to change

I think the descriptors need to be looked at. The fluctuation of symptoms needs to be taken into account better. Conditions that don’t change shouldn’t need to be reassessed. The assessment doesn’t work at all – it makes a mockery of the whole thing. What’s the point of it? The whole process needs to be more evidence based, and not designed to catch people out.

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Get support

Our MS Benefits Advice Service offers free advice to people affected by MS in England, Wales, Northern Ireland and Scotland.

You can get in touch with the service through our MS Helpline on 0808 800 8000 or email [email protected].

Our MS Helpline is also here for you for emotional support on 0808 800 8000 or email [email protected]. It's available on Monday to Friday, 9am to 7pm except bank holidays.