We exist to improve the lives
of everyone affected by epilepsy

Personal Independence Payment (PIP) Assessment

What's the issue?

Personal Independence Payment (PIP) is a benefit which helps with some of the extra costs caused by long-term ill health or disability. To be awarded PIP you must live in England, Scotland or Wales. You must also go through an assessment process. This can include filling out a form, submitting further evidence and having a face to face assessment. If you are not awarded PIP you can ask for the decision to be reconsidered (mandatory reconsideration). If you are still unhappy with the outcome, you can appeal the decision.

On 23 February 2017, the government announced plans to change eligibility rules for PIP. These changes could see people with epilepsy, denied access to financial support. This support can help people with the extra cost of living with a disability. The rules will be tighter for people who need support or supervision with their medication or monitoring their health condition. This is despite an Upper Tribunal which ruled that the descriptors should be widened.  Each descriptor carries a number of points. The descriptor helps the assessor decide what someone is capable of while carrying out daily activities.

The assessment process is already not effective at capturing and reflecting the nature of epilepsy.  Epilepsy Action believes that it does not assess the impact epilepsy has on an individual’s daily life. This means that people are not awarded the correct level of PIP, or may not be awarded PIP at all. The proposed changes will mean even more people with epilepsy face the possibility of life without this financial support. 

Epilepsy Action wants the government to urgently  and review and assess the whole PIP assessment process.

What we are doing

The government enforced these changes from 16 March. We have been sharing our concerns with MPs and peers, who signed an Early Day Motion that asked for a debate to raise the issue in parliament.

We wrote an open letter to the Prime Minister, stating the potential impact of these proposals for people with epilepsy and asking her to reconsider changing the rules for PIP. 

View the letter here: Open Letter

We spoke to the media, sharing stories and concerns to make sure the issue doesn’t go away and that people continue to talk about it.

We spoke to people with epilepsy and epilepsy specialist nurses about their experiences. We will continue to use these to illustrate why we want to see changes to the assessment process and the impact PIP has on individual lives. We submitted a response to the 2nd Gray Review of the PIP assessment which includes our recommendations to improve the process for people with epilepsy. The findings of the review have now been published. 

Read our response to the findings of the
second independent review on PIP

How you can be involved

You can email or tweet your MP.  Share your experiences and tell them how Personal Independence Payments, or the lack of, affects your daily life.  You can find your MP on twitter at tweetyourmp.com.

Get involved on social media using the hashtag #PIP or #PIPchanges to keep attention on the issue.

We want to hear your experience of PIP and the assessment process. What difference does it make to your life if you’ve been awarded PIP? What is the impact if you haven’t?  By collecting people’s experiences and providing real examples we can highlight areas that need improvement.  We can show why the assessment process needs to be reviewed and why the governments planned changes shouldn’t go ahead. Contact us at campaigns@epilepsy.org.uk

More information

We have help and guidance on PIP and other benefits on our website or call the Epilepsy Action Helpline on Freephone 0808 800 5050.

Event Date: 
Wednesday 14 September 2016 - 09:32

Comments: read the 4 comments or add yours

Comments

Went to court and I won the appeal for my daughter. The forms do not cover day to day life of an epileptic.

Submitted by Elaine Crump on

I have appealed my case of pip, which has been rejected 3 times so I am willing to take them to court and fight my case so any advice would be greatly appreciated.

Submitted by rosearee reid on

Hi Rosearee

Thank you for your question. We completely understand your frustration. Our advice and information line receives many calls about Personal Independence Payment and the assessment process. We know that it can cause a lot of stress and worry.

Applying for benefits or asking for a reconsideration/appeal can be a challenge, as the rules can be quite complicated. If you haven’t already, it would be beneficial to get support with this from a specialist welfare benefits advisor, as their knowledge and experience can be invaluable. Organisations such as Citizens Advice or a local welfare rights unit can provide support with reconsiderations and appeals.

If you haven’t already, you may wish to view our information on PIP and epilepsy. Please feel free to print this off and take to any meetings you have with a welfare benefits advisor. (I can send you a printed copy if you can’t print it yourself).

If you are still unsure whether you could be entitled to this benefit you could use the charity Turn2us  benefit check service. They will ask you some questions and work out if you would be eligible for this and other benefits. 

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on

My son Mark who was 36yrs applied for PIP, when he developed epilepsy a year ago. He was quite poorly and sometimes had multiple tonic-clonic seizures in a day. He went down to three days at work, but practically and financially, he found living and working day to day very difficult. He would have a seizure at work and each time he would injure himself. He had no warnings beforehand to find a safe environment or position. The poor boy was very ill. However, his application for PIP was refused. He had many changes in medication and was unable to have surgery, because he was unsuitable. His seizures did lesson and recently he was down to one a fortnight, but they were very severe. He was a very courageous young and I say WAS, because tragically he died during a seizure just over a month ago. I am angry and frustrated. I feel that him continually working and unable to claim any benefits was a contributory factor in his untimely death. He worked hard from the age of sixteen and not once in his short life did he take from the system and yet he received no help when he needed it. He has left a heartbroken family and an 8yr old son. Tragic !!!

Submitted by Kay Westwood on