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Julie Ann Evans

13 July 2020

Guidance on Disability Benefits Claims Related to Neurofibromatosis

Julie Ann Evans is a welfare rights consultant, who has been assisting people who have NF to navigate the benefits system. She explains how to approach a Personal Independence Payments (PIP) assessment.

For PIP, you are required to have a medical assessment. The assessor might be a nurse, or a paramedic or a physiotherapist, and when they’re good they’re good, and when they’re bad, they’re shockingly bad. It is very hard for the assessor to understand when the symptoms are hidden. With NF1, when someone walks in, it is not always immediately obvious – they may have tumours under the skin, or on the spine. And people can be inclined to put on a brave front when they are asked about pain, and say ‘oh, I’m fine’.


It can be difficult to get across the struggles you’re going through. If you have some good days and some bad days, this can be challenging for the assessor
to understand.

The PIP form is about 50 ages long. When you make a claim, you need to provide as much information as you possibly can. You need to gather supporting medical evidence – from doctors, nurses, Nerve Tumours UK – so the assessor has some information. If you suffer from weakness and fatigue, you need to get that over on the form and in the assessment. If you have good days and bad days, a good day might be one without severe pain, but not pain-free. There can be a tendency to under-estimate problems, and also to find work-arounds – but they still count. One way to overcome this tendency can be to keep a daily diary for a week. The process can make you miserable, but it is important.

You need to prepare yourself for the assessment. There are useful guides provided by Turn2Us (turn2us.org.uk), the national charity for welfare rights, and by the Citizens Advice Bureau (citizensadvice.org.uk) – search for “PIP”. Make sure you are receiving all your benefits. As well as PIP, you may also qualify for a severe disability premium. You may also be entitled to Jobseekers Allowance, Council Tax reduction, Universal Credit and Housing Benefit among others.

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