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.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Littlewoods-charityPage-Preview-800-x-500-px_800_600_s_c1.png)
Littlewood’s Charity Night
Have a read of yet another successful charity night hosted by the Littlewoods
Read More![](https://nervetumours.org.uk/images/made/images/common/Emily-owenPage-Preview-800-x-500-px_800_600_s_c1.png)
Emily Owen Positive Role Model (Disability) Award Nomination
Vote for our tustee Emily Owen at this year's National Diversity Awards 2019.
Read More![](https://nervetumours.org.uk/images/made/images/common/gareth-evans-Page-Preview-800-x-500-px_800_600_s_c1.png)
Research Outlook with Prof Gareth Evans
Have a read on some of the latest research with Prof Gareth Evans
Read More![](https://nervetumours.org.uk/images/made/images/common/Ben-fundraiser-dinnerPage-Preview-800-x-500-px_800_600_s_c1.png)
ICAEW Worcestershire Annual Dinner and Ball Fundraiser for NTUK
The ICAEW Worcestershire Annual Dinner and Ball raised an incredible amount for us this year! Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/White-family-coverPage-Preview-800-x-500-px_800_600_s_c1.png)
We are Family London Marathon
Have a read of the remarkable journey the White family has undergone in support of their young daughter Gaby who has NF.
Read More![](https://nervetumours.org.uk/images/made/images/common/Shine-a-Light_1600x900px_800_600_s_c1.jpg)
Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
Read More![](https://nervetumours.org.uk/images/made/images/common/jem-nd-richPage-Preview-800-x-500-px_800_600_s_c1.png)
Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Rachel-Page-Preview-800-x-500-px_800_600_s_c1.png)
Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
Read More![](https://nervetumours.org.uk/images/made/images/common/Beijing-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Our Two Marathon Runners from China
Meet our two runners from China who like to partake in marathons across the globe.
Read More