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New government changes to PIP assessor guidelines may improve claims process for people with epilepsy

6 Nov 2017

The UK government announced changes to its Personal Independence Payment (PIP) guidance for assessors on 2 November. This change could help more people with epilepsy get
access to this benefit.

The government’s update to the guidance should help assessors better understand how epilepsy affects people’s daily lives.

This move follows criticisms of the current system, calling the PIP assessment process ‘not fit for purpose’. Epilepsy Action has also been campaigning for improvements and urging MPs to fight for a fairer system.

Penny Mordaunt is the minister of state for disabled people, health and work. She said in a statement that the changes reflect the ruling of an Upper Tribunal from March this year.

The tribunal ruled that the law around PIP assessments is not being properly understood. The government changed the assessor guidelines to help tackle this problem.

Ms Mordaunt added: “This will increase entitlement for a number of both new and existing claimants, largely those with conditions such as epilepsy, which affect consciousness. The department estimates approximately 10,000 claims will benefit by £70-£90 [a] week in 2022/2023.

What we know so far

Epilepsy Action is in the process of getting more details from the government about how  these changes will affect people with epilepsy who  receive or have  applied for PIP. At the moment the full impact of these changes are not clear. What we do know (as a result of a Written Question in the House of Commons) so far is:

  • People who are getting some level of PIP will have their claims automatically reviewed according to the updated guidance.
    • The review of these cases began on 20 November 2017 but the government do  not know how long it will take for all relevant cases to be  reviewed.
  • People with epilepsy who were refused PIP on or after 9 March 2017 will have their  claims  automatically  reviewed according to the updated guidance.
    • The review of these cases began on 20 November 2017 but the  government do not know how long it will take for all relevant cases to be reviewed.
  • New PIP claims made on or after 13 November 2017 will be assessed under the  updated  guidance.

People with epilepsy who fall in to one of these groups should wait to hear from the  Department for Work and Pensions (DWP) about  a potential increase in their PIP award.

A number of  important details about how these changes will affect people with epilepsy who were refused PIP before 9 March 2017 are still not clear. Epilepsy Action has contacted the government asking for more information. They will update people as soon as they find out more. The charity has said it is not able to advise people about whether they should reapply for PIP until they receive more details from the government about this update.

An important step

PIP is designed to help disabled people with the extra costs of their condition. The government introduced this to replace the Disability Living Allowance (DLA).

Last month, DWP data showed that 3 in 5 people with epilepsy who received DLA had their PIP award refused or reduced. The rate of reduced or refused award was higher for epilepsy than for any other condition.

Philip Lee, chief executive of Epilepsy Action, said: “We are delighted to see the government is starting to recognise the complex needs of people with epilepsy.

“Many people with the condition could have a seizure at any time, often without warning. The daily risk to people’s safety needs to be taken into account. We know the current system is not working and is failing people with epilepsy. They are more likely to be refused PIP than those with any other health condition.

“Epilepsy Action is fighting for the PIP system to change. The announcement represents an important step in making sure that people with epilepsy get the support they need to live a safer and more independent life.”

This article was updated on 27 November 2017 with new information


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Comments: read the 6 comments or add yours


Every time we are seeing information about PIP for Epilepsy sufferers. What about the people claiming Employment and Support Allowance?

Submitted by Bill Hasan on

I thought they were looking into all claims? I made mine a while back (definitely before March 2017) and was turned down. Is it worth reapplying or not?

Submitted by Rebecca Cairns on

Hi Rebecca 

Thank you for your question. There are still a lot of questions around this, which we are try to get answers for.

To our understanding if your PIP claim was not successful before this date, you will not have your case reviewed. We are challenging this as we think this is wrong and we think all existing and unsuccessful claimants should be reviewed.

We don’t know if you should reapply or not. We will continue to update people on our website, social media and in our magazine Epilepsy Today when new information comes through.

In the meantime, you may wish to talk to Citizens Advice about whether to reapply for your PIP



Epilepsy Action Helpline Team

Submitted by rich on

After receiving DLA for head injury caused epilepsy for more than 10 years, my son has just had his PIP assessment and his benefit has been cancelled. His condition has not improved during this time. What can we do about it?

Submitted by Diane Moseley on

Dear Diane

Thank you for your post.

We completely understand your frustration. Our advice and information line receives many calls from people who received DLA but have not been awarded Personal Independence Payment. This can be because the two benefits are assessed differently. If you haven’t already, you may wish to view our information on PIP and epilepsy.  

If you think your son has been assessed wrongly, the first thing to do would be to ask for a reconsideration. If they don’t change their decision, you will then have to ask for an appeal.  We’ve heard of many people having the decision changed when they have a reconsideration or go to appeal.

Asking for a reconsideration/appeal can be a challenge, as the rules can be quite complicated. 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 we can be of any more help, please feel free to contact our helpline team directly. You can either helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.



Epilepsy Action Helpline Team

Submitted by rich on

I have been refused the new P.I.P after always having D.L.A at the middle rate of care, and now only 2 points for the new Daily Living at the lowest rate.
Had P.I.P assessment carried out by a Mental Health Nurse at ATOS. They said I don't need help washing & changing after a seizure with incontinence of bladder 95% of seizures, also that I don't wear pads. I can't wear them due to being 1. Proud 2. Suffer allergic to them 3. They don't stay in place. Also don't need help with medications although my meds have to be kept locked up due to accidental overdoses due to memory lost.
Did a mandatory reconsideration still the same.
Didn't find out about the mental health nurse until getting the ATOS report and checking their name on the N.M.C register. I am confused about how a Mental Health Nurse can assess people who suffer Epilepsy. Which is as we all know Neurological and not Mental Health, although I do have depression.
My Epilepsy is uncontrolled still again although going through various medications and combinations. Also 95% of my seizures have no warning and memory for up to 2 days afterwards is lost.
Having to go through Tribunal now as my assessment report has incorrect information. The decision was made without my GP report so guess Neurologist report has also not been either received or taken into account.
Hopefully the Tribunal will be in my favour and make the DWP & Government realise Epilepsy affects us all in so many ways, and their guidelines are so wrong.
Please everyone speak to your M.P about how P.I.P is affecting you, and everyone who has Epilepsy. As I am doing this Tuesday (21.5.18).
Thanks to Epilepsy Action and other campaign organisations for pushing government to be actually in the real world.
Both ATOS and CAPITA get bonuses for taking people of D.L.A & P.I.P.
Hope everyone gets the correct level of P.I.P.

Submitted by Sir Joshua Jackson on

Question about your epilepsy?

Use our email helpline service -- your question will be sent directly to our trained helpline advisors who will reply to you. If you post a question about your epilepsy as a comment on a page, it may not be replied to so please use the email helpline service.

Want to talk to other people with epilepsy?

Take a look at forum4e our online community for people with epilepsy. Anyone with epilepsy over the age of 16 can join, from anywhere in the world.

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