DWP's uncertainty over future of PIP leaves benefit claimants in fear: 'What's going to happen to me?'

Disabled people are in “limbo” as the Labour government deliberates proposed cuts to the benefits system which could have a “devastating” impact on their lives.

The previous government planned to overhaul the disability benefits system to slash the welfare bill. These changes could see personal independence payments (PIP) replaced with one-off grants and vouchers, and the eligibility criteria tightened.

Under Labour, the Department for Work and Pensions (DWP) has promised to consider its “own approach to social security in due course” and “champion the rights of disabled people”. But it is yet to confirm whether it will continue with the proposals for PIP.

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Disabled people and charities have told the Big Issue the uncertainty risks worsening their mental and physical health conditions and putting further pressure on the NHS.

Yolanda Barker, a 52-year-old woman with multiple sclerosis (MS), said: “It’s the unknown. We’re left in limbo again. What’s going to happen to me in the future? Is my condition bad enough according to them? They’re not living it day to day. These changes will impact lives, and it’s deeply unsettling. There will be a ripple effect.”

Barker has pain all over her body. She uses an electric wheelchair and crutches to get around, and she is prone to falling “which is nasty and causes lots of problems”. Fatigue can be overwhelming and she usually needs to sleep at least once during the daytime. 

She can become paralysed during her sleep, unable to open her eyes or speak, and she needs someone to help move her. She takes more than 30 pills to soothe her symptoms each day.

But PIP is a lifeline. It means she can afford the extra costs of having a disability, such as her powering her electric wheelchair and physiotherapy sessions. She is also eligible for a motability car, which is accessible for her and means she can get lifts from her husband when she wants to leave the house. Public transport can be too difficult.

Barker is fearful that if the DWP makes the changes to PIP as the Conservatives proposed, she could lose the car and the financial support she needs to live – and she is far from alone.

A consultation into the proposals for PIP received 16,000 responses. Stephen Timms, the minister for social security and disability at the DWP, confirmed in a parliamentary question that “responses to the set of proposals on the reform of PIP was mixed and for some proposals consistently negative”.

David Southgate, policy manager at disability equality charity Scope, said: “When the last government proposed damaging reforms to PIP, we were inundated with calls from disabled people terrified of what it meant for them. Almost six months later they are still waiting for answers. Disabled people are still waiting to hear the government’s plans for PIP. We know that this wait is causing anxiety and confusion for many.”

Big Issue has also received letters from disabled and seriously ill people “terrified” about the DWP’s plans for PIP. One reader said the Conservative ministers were “attacking and demonising” disabled people in a bid to save money.

Ceri Smith, head of policy at the MS Society, agreed that the proposals outlined in the Modernising Support green paper were “mainly motivated by a drive to cut spending on PIP, rather than a genuine desire to improve the benefit”. 

“Living with MS can be debilitating, exhausting and unpredictable – and comes with numerous hidden costs,” Smith said. “If these proposals were taken forward they would force many disabled people to cut back on essentials they need to help manage their conditions, causing further harm to their health, and risk pushing people into debt.”

PIP is a benefit designed to help disabled people cover the additional expenses they face every day. On average, households with a disabled person face extra costs of £975 monthly.

Barker feels that a voucher scheme or one-off grants would not cover the full extent of costs.

“It’s things like more toilet roll,” she said, “or changes of clothes or washing. These are things that are not pleasant to talk about but happen. They can be pricey to deal with, especially when you haven’t got a reasonable wage coming in.”

The DWP has promised a more compassionate approach and increased support, particularly to help disabled people get into work. Timms said Labour will “rebuild the trust which has been missing in the past” and “listen carefully to what disabled people and disability charities say to us”.

However, there are fears that Labour’s focus is too heavily on employment – which risks undermining the experiences of people who are too ill to work.

Southgate said: “Disabled people want to see a new positive vision for PIP. The new government needs to urgently ditch its predecessor’s plans and set out its own proposals.

“Life costs more if you are disabled. Any plans to make PIP harder to access would be entirely counter-productive for the government and devastating for disabled people. 

“It would lead to disabled people becoming more isolated and risk worsening their conditions. This will likely create more pressure on the NHS and public services, and make it harder for disabled people to get into and stay in work.”

Big Issue has reported extensively on harrowing experiences faced by people navigating the disability benefits system. Aidan, an amputee, shared his story of being driven to “psychological trauma to the point of being suicidal” when the DWP took away his PIP.

Josh took his own life aged 25 after facing significant stress his disability benefits would be stopped. Pauline had schizophrenia and other health conditions and was denied disability benefits. She was only awarded PIP when she was diagnosed with terminal cancer.

Charities urge the government to consider changes which will help disabled people – not punish them – and they want disabled people to be fully involved in the decision-making.

A spokesperson for the DWP said they have no further update on the PIP changes at this time, but added: “We are committed to championing the rights of disabled people so their views and voices are at the heart of all we do. We are considering the responses to the consultation and will update in due course.”

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