Last week the Government announced that people with severe, life-long conditions will no longer have to attend regular reviews for Personal Independence Payment (PIP), a benefit to help with the extra costs of a long-term health condition or disability. It follows sustained and vehement scrutiny of the benefit from politicians and disability campaigners.
In our survey of people with a brain tumour, 80% of respondents reported stopping work entirely or reducing their hours as a result of a brain tumour. Crucially, 1 in 3 respondents said that they depend on benefits for most or all of their household income. Nearly half of all respondents reported their experience of the system was poor. The Work and Pensions Select Committee concluded recently that while most claimants proceed through their PIP and Employment Support Allowance (ESA) assessments without significant problems, a sizable minority do not.
The Price You Pay; the Financial Impact of a Brain Tumour (PDF) –
This report makes a series of recommendations to politicians, healthcare professionals and benefits assessors which we believe will transform the experience of those affected for the good.
The introduction of a light-touch review every ten years for people awarded the highest level of PIP support, where their needs are expected to stay the same or increase, is intended to reduce bureaucracy and minimize stress for the individual. Currently, people receive PIP for a set period of time and must then submit a new claim. It’s a welcome change. Brain tumours can be life changing and symptoms severe – around 29% of people have mobility problems and around three in five experience fatigue. Renewing a claim is likely to be unnecessary, onerous and aggravating for those affected with severe or progressive conditions.
The Government has committed to additional changes to the application and assessment process for PIP. Among them is a commitment to make recording the PIP assessment a standard part of the process and to carry out an independent review of application forms 5. But further reform is needed for PIP to truly work in the interests of the disabled. For people affected by a brain tumour, disability benefits must be easy to access and appropriate to need. That is why we are calling for more reform alongside disability campaigners.
Take three examples of changes to PIP we want to see. First, application forms should be made available to download online or fill out in Jobcentres and without a return deadline (four weeks). Second, brain tumours should be added to the list of conditions requiring additional support in the PIP assessment guide. The current list is not exhaustive, but for those conditions listed there is a presumption of support which underpins a more collaborative and less adversarial claims process. Third, informal observations should only be used during a face-to-face assessment where the assessor has knowledge of the condition. Symptoms of a brain tumour may be hidden or fluctuate and assessors should more readily ask probing questions to understand what life with the condition is like and defer to medical evidence submissions.
We are supporting the Disability Benefit Consortium’s PIP summer of action, encouraging the public to speak to their MP about their experience of the benefits system and the changes that are needed. Find out how you can get involved here.
The Government will be consulting on the light touch review process in due course and we will work with them to ensure that it works for people affected by a brain tumour. The Charity will also be encouraging MPs to sign an early day motion (EDM) calling for a review PIP for young cancer patients so that they receive financial support backdated from the day of diagnosis. An EDM is intended to draw attention to an issue and could end up being debated in Westminster if enough MPs sign it. You can read more about our policy work on welfare and benefits here.