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Pauline & Helen Boughen’s PIP Journey

09 June 2020

Navigating the Benefits System

Julie Ann Evans has guided a number of people from the nerve tumours community. One is Helen, who is 33, and was diagnosed with NF1 when she was 15. Her mother, Pauline, describes their recent tortuous PIP journey.

Helen has struggled for an awfully long time with her NF1, has had multiple surgeries and also has Asperger’s.

She was told she had to apply for PIP if she wanted to continue getting the benefit. We struggled through the form. It’s extremely black and white – there’s no flexibility or leeway. About 8 weeks later, the assessor came. Helen has a lot of scarring in her mouth, which can make her hard to understand, and the assessor herself apologised for having difficulty understanding her. But then when the assessment came back, it scored 0 for communication – in other words, that Helen had no difficulties with speech.

Helen explained that she liked to cook, but that she found it difficult. She was asked if she could walk 200 metres. Helen said she was OK on the flat, but it was difficult to walk uphill to town. After all the form-filling, and the assessment, we got back the results of the assessment: 0 points. That means she was not entitled to any PIP at all. This was devastating and ridiculous: Helen has immense daily challenges and obstacles – and though she is fiercely determined and overcomes them as best she can – the difficulties are real.

Nerve Tumours UK put us in touch with Julie Ann Evans, who helped us with the appeal, but after 2 months, we still hadn’t heard anything. It was then I asked our local MP, Jesse Norman, to get involved, and also got the Hereford Times interested in the story. As if by magic, our appeal was successful and Helen was re-assessed at 12 points, which made her eligible for enhanced payments. Her PIP was also backdated.

"“Anxiety raised in May when Helen was told she would be reassessed – an assessment in September that sounds shambolic, an utterly perverse decision to strip her of all disability payments straight away, a reconsideration that took months to complete and ended with a giant U-turn.”"

– Hereford Times

Helen was lucky that she had me to help her through this, and we were both lucky to have Julie Ann to guide us, and our MP and local paper’s support. But what sort of system is it that puts vulnerable people through this?


If you have NF and are struggling with a PIP assessment and are looking for some benefits guidance click the link below to read Julie Ann Evans article

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