The government said last month that it will not uphold the rulings of two Upper Tribunals that said some of the criteria for Personal Independence Payments (PIP) should be widened.
PIP is a government benefit designed to help people with some of the extra costs that a long-term condition or disability can cause.
Last year, two tribunals were held to challenge how strict PIP criteria are. Both ruled in favour of changes that allow more people who need this support to be able to access it.
The Department for Work and Pensions (DWP) said these changes would cost the government £3.7 billion more by 2022. Since the ruling, the government has rewritten its legislation to stop these changes from happening.
Reports have suggested that people with epilepsy may be hit hard by the PIP changes, alongside people with learning disabilities, diabetes, anxiety and dementia.
The government responded, saying that “recent legal judgements have interpreted the assessment criteria for PIP in ways that are different to what was originally intended”. It added that the changes would see support going to those who need it most and that claimants would not see a reduction in the amount of PIP previously given.
This move has been criticised by the Labour and Liberal Democrat parties. Labour said restricting access to PIP will cause 160,000 people to lose out on the benefit, while the Lib Dems have tabled a motion against these changes in the House of Lords.
PIP and the tribunals
When claiming PIP, the amount of money a person receives depends on the way their condition affects them. PIP is awarded on a points system and is based on two aspects: ‘daily living’ and ‘mobility’. A person can be eligible for PIP based on one or both of these aspects.
The two tribunals from last year looked at how strict the PIP regulations were.
One tribunal ruled that more points should be awarded under ‘mobility’ for people where travelling poses ‘overwhelming psychological distress’.
The other said that people who need help to take medication and monitor a health condition should be given more points under ‘daily living’.
Epilepsy Action deeply concerned
Epilepsy Action has released a statement explaining that tighter rules on who can qualify for PIP may have a big impact on people with epilepsy.
Epilepsy Action said: “The government must urgently reconsider making their planned changes to PIP. We believe these proposals will penalise people with epilepsy, who may rely on support or supervision to take medication and monitor their health.”
The charity spoke to Karen McCormack, whose daughter has epilepsy, about the changes to PIP. Karen said: “My daughter managed her condition in a stoical, courageous and positive way. She tried to maintain as close to a ‘normal’ life as possible for herself, but according to her assessor, this meant that she was coping well and was successful in life.
“What they failed to recognise was that this was made possible because of the extra support she received through her DLA [PIP] payments. Now she has been reassessed as not needing this extra financial support, she has lost her confidence, and her life is far from ‘normal’.”
Process failing people with epilepsy
Epilepsy Action’s statement said that the charity has “long felt that the current assessment process is failing people with epilepsy”. The charity believes many people with epilepsy, who need this extra support, have already missed out on this benefit because of its strict assessment process. This is before the government changed the law to make the assessment measures even stricter.
Epilepsy Action criticised the PIP assessment, calling it “ineffective and inadequate”, and saying that it “does not accurately assess or reflect what it is like to live with the condition.”
Epilepsy Action stressed that the DWP has failed to recognise people with epilepsy may require emergency medicine to be administered, which they cannot do themselves.
The charity added that the government has failed to consider that without emergency medicine, a prolonged seizure could turn into status epilepticus. This could result in damage to the brain, cause other health problems or even be life-threatening.
The statement concluded: “We do not believe enough progress has been made in improving benefits assessment processes for people with fluctuating or hidden conditions, like epilepsy. Further review and assessment is desperately needed to make sure claimants can be confident that the outcome is fair and accurate.
“The government decision to make these changes, making eligibility rules tighter, is likely to cause even more worry, stress and uncertainty for people with epilepsy. Epilepsy Action believes the government must immediately halt the proposed changes, which further discriminate against people with epilepsy, and uphold the ruling made by the Upper Tribunal.”
Epilepsy Action is planning to send a letter to the Prime Minister, urging the government to reconsider their decision to make PIP assessments stricter.
If you want to get involved, you can email or tweet your MP, sharing your experiences of how important PIP has been for you. You can find your MP on twitter at tweetyourmp.com. You can get involved on social media using the hashtag #PIP or #PIPchanges to keep attention on this issue.
You can also chare your experiences of PIP and the assessment process with Epilepsy Action by contacting email@example.com. Your experiences will help provide real examples of the impact of PIP for people with epilepsy.