21 August 2018

Epilepsy Futures shortlisted for Self-Management Project of the Year!

We are thrilled to announce that Epilepsy Futures, our Big Lottery funded programme of positive change has been shortlisted for Self-Management Project of the Year in the 2018 Self-Management Awards.

Voting is now open to the public and we need your help! 

Cast your vote for Epilepsy Futures here and help us recognise the hard work and dedication of everyone who made Epilepsy Futures happen. You can vote once a day, every day till the closing date of 21 September.

To read more about the exciting and life changing things participants have been doing on Epilepsy Futures, follow our WordPress blog on https://epilepsyfutures.wordpress.com.


14 May 2018

PIP – Fighting for a Dignified Assessment Process

People whose epilepsy affects their ability to carry out day-to-day activities should expect to be able to claim disability benefits to allow them to get the support they need. Yet people with epilepsy and their carers tell us that the process of applying for disability benefits – in particular Personal Ind

ependence Payments (PIP) – is frustrating, stressful, at times humiliating, and frequently ends in failure and despair. Questions asked during face-to-face assessments are not relevant to epilepsy and PIP decision letters often fail to reflect what was discussed during assessments.  The entire PIP process

denies the impact of epilepsy and the ever-present risks that people with epilepsy face.

A report produced by the Department of Work and Pensions last October showed that three in five people previously in receipt of Disability Living Allowance had their PIP application refused or their award reduced. The rate of refused or reduced awards was reported to be higher for epilepsy than almost every other condition.

Our experience at Epilepsy Connections is that the majority of PIP applications fail until the Appeal stage, when almost all achieve a satisfactory outcome, although many claimants abandon their claims earlier in the process due to the sheer stress of the experience.  This raises questions about a host of issues, starting with the quality of the initial assessment process.

Changes to the guidance for PIP assessors introduced late last year would appear to show that the impact of epilepsy is starting to be recognised, although this remains to be seen, and the experience of people in touch with Epilepsy Connections is still that the current PIP assessment process is not fit for purpose.

Eleven benefits, including PIP, have been devolved under the new Social Security (Scotland) Bill passed in the Scottish Parliament last month. The Bill enshrines in law the principle of treating benefits claimants fairly and with dignity, and will eventually bring to an end the compulsory assessments that all claimants must currently undertake.

The new Bill offers a unique opportunity to establish a PIP application process that takes full account of epilepsy and its effects, but it will be some time before we see any changes. People with epilepsy need a fair and dignified assessment process now.

Along with people who use our services and some of our frontline staff who provide support with benefits claims, I’m looking forward to meeting MSPs in the Scottish Parliament during National Epilepsy Week (13 – 19 May) to talk through the key issues and offer ideas about the best way forward. We’ll also be meeting with Independent Assessment Services (formerly ATOS) to tell them why and how PIP assessments don’t work for people with epilepsy.

If you’ve had problems claiming PIP, I hope you’ll get involved in our campaign for a dignified PIP assessment process.  You can start by getting in touch with your MSPs to tell them how epilepsy affects you, your experience of claiming PIP, and how you think the process could be improved.

We’ll keep you posted about our work on this important issue. Good luck with your campaigning!

Shirley Maxwell, Executive Director