When Personal Independence Payment (PIP) was first introduced in 2013, Pauline, who had severe schizophrenia, worried that she would have her benefits stopped. In 2020 her worst fears came true: she was refused PIP, despite qualifying for Disability Living Allowance (DLA) for 28 years. Consequently, her DLA payment was also stopped, forcing Pauline to live off her savings. This verdict was later overturned due to a late-stage cancer diagnosis; but tragically it was too late for Pauline, who passed away just four months later.
The Government plans to save millions of pounds by changing the PIP eligibility criteria, but the benefit is already notoriously difficult to get.
Under the Government’s proposals, many people who are currently eligible for PIP will miss out from November 2026 onwards, and there are concerns that people with mental health difficulties will be especially hard-hit by the proposed new threshold.
What is PIP?
PIP is a benefit that is paid regardless of whether someone is in work, to compensate for the additional costs of being disabled. People with severe mental illness (SMI) use PIP to pay support workers for help with daily living skills, support with medication, and tasks they can’t manage themselves, such as housing assistance and money management. Support workers play a vital role in recognising abusive situations and can help if someone needs to be rehoused. People in North Tyneside used to get Outreach Support (assistance with daily tasks including accessing health care, shopping and social activities) free of charge, but in recent years they’ve been told to pay for it themselves using their PIP payments. Many people use their PIP to enable them to carry on working while living with mental illness.
My hard-hitting documentary Pip, Pop and a Pandemic (2023) follows two couples in the north east living with schizophrenia, and reveals the harsh realities of an already cruel and inflexible benefit system. The Government’s proposed plan to fix this injustice involves cutting spending by £5 billion by 2029-30. I, like many others, have serious concerns about what this will mean for those with long-term disabilities who are unable to work and are already struggling to survive on benefits.
It’s not that Pauline didn’t want to work; her mental illness meant that she was unable to. Pauline dreamed of having a family and even aspired to become a nurse, but after developing schizophrenia in her teenage years, this dream was unfulfilled. She did voluntary work through mental health charities, but with a supervisor who understood if she failed to turn up because she was having delusions or slept in due to her heavy medication. The Government must recognise that not all disabilities are physical. If people with severe mental illness lose their PIP support, it could have dire consequences.
How could proposed changes to PIP affect people living with severe mental illness?
Pauline used to belong to Supporting Stars, a voluntary group run by former support worker Lara Ellis. I asked Lara how the members are feeling about the proposed benefit changes. Lara said it was a very difficult conversation because for most people, the thought of losing their benefits is just too frightening to contemplate. They don’t understand what the changes will mean and avoid watching the news.
One member (who has asked to remain anonymous) has already had her PIP payments reduced and is in the process of appealing. She’s used support workers for 15 years and says if she is denied the higher rate of PIP at appeal, she will no longer be able to afford the help she needs.
“This support enables me to live more independently and allows me to access the community, something I struggle with alone. It terrifies me that I could lose support. Before I had support I was living with no gas and electricity for four years because I didn’t understand how to manage the setup of these things, and I wouldn’t let them in for a gas safety check as I was too anxious so I ignored them, hoping the problem would go away. Receiving PIP allows me to pay for support so that I am supported in these situations.”
The consultation for the Pathways to Work green paper (which sets out the proposed changes to PIP) is open for responses (particularly from disabled people and those with health conditions) until 30 June. It’s widely accepted that the current benefits system isn’t working, and so this is a real opportunity for the Government to change the system for the better and get it right.
You can share your response to the Pathways to Work green paper by completing this form or emailing Consultation.pathwaystowork@dwp.gov.uk
