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One of our tenants Rob, 50, also volunteers at the trust. He used to be a mortgage advisor until worsening Multiple Sclerosis symptoms meant he had to give up work. Rob has limited power in his arms and limitations with hearing and memory. As a wheelchair-user, most public transport in his area is inaccessible and he relies on a car. He can't drive, but his partner can. Rob's DLA (disability living allowance) contributes to the car’s costs through the Motability scheme. He relies on his DLA payments to be independent.

Rob now uses his financial background to help Papworth Trust’s accounts team. “Without my DLA, the volunteering work I do and my social outlets would all fall down. I would feel ostracised, become agoraphobic and I wouldn't be able to keep my brain stimulated. …I need a purpose in life. I want to use my skills and knowledge in life and from having a disability to show the difficulties this throws up and to campaign for life to be easier for all.”

Rob is just one of 500,000 people who doesn't know what will happen to this essential support under the new system to replace DLA with Personal Independence Payments (PIP), which has been debated as the Welfare Reform Bill makes it way through the Lords.

A concern that details of how the reform would affect disabled people had not been fully investigated was among the reasons that Papworth Trust led a group of 16 major charities urging the government to pause the bill (read our joint statement on the Papworth Trust Website.)

We wanted to allow more time to assess their impact and to ensure that PIP meets the needs of disabled people. The House of Lords voted on an amendment that would have answered our call for a pause in introducing PIP; it was narrowly defeated, by 229 votes to 213. However, the government made some concessions, agreeing to a staggered implementation process and promising to take the needs of disabled people into account.

When Papworth Trust recently surveyed over 2000 disabled people about the proposed changes to DLA. 95% of people said that a cut to their DLA or PIP payment would affect them. Our survey also found that if payments were reduced or stopped under PIP, 86% of disabled people will have to cut back on essentials such as food or being able to get out and about. Not only will cuts to DLA  push more disabled people into poverty, they also threaten to marginalise them and risk increasing the burden on the NHS and social care system in the long run.

The small concessions show that campaigning can pay off. As well as the provider-led arguments, the campaigner-driven Spartacus Report (also known as the Responsible Reform report) made many sit up and take note. It revealed strong opposition from disabled people, charities and other interested groups to the DLA changes and worrying evidence that the decision to reduce DLA expenditure by 20% may have been based on incomplete or misleading data about the reasons for growth in DLA. On Saturday, disability campaigners demonstrated against the welfare reforms.

But while the House of Lords has agreed some welcome changes, the Commons is likely to reverse these moves. It is therefore vital that we all put the pressure on the government to put the interests of disabled people first as the Welfare Reform Bill goes through Parliament.

Leonard Cheshire Disability, another VODG member which joined us in the coalition of 16 charities fighting the changes, has already warned that the Lords v Commons votes “are not just a bit of ‘political knockabout’” but a serious challenge from disabled people to the government to actually listen and respond properly to their concerns.

Rob explains it from a more individual perspective: “Whilst it isn't always easy, I think you have to make the most of life. The DLA enables that life to be a better one.”