Helping shape the future of PIP, deafblind voices at the heart of change

The people who rely on Personal Independence Payment (PIP) every day are the people best placed to help improve it. That’s why we recently brought together people living with deafblindness from across the UK to share their experiences as part of the Department for Work and Pensions’ (DWP) Timms Review of the PIP assessment process. 

Through two facilitated workshops, online submissions and a one-to-one telephone consultation, nine people we work with shared their experiences of applying for and receiving PIP. Their stories and insights formed the basis of four formal submissions to the review, ensuring that the lived experience of people with combined sight and hearing loss is helping to shape the conversation about the future of disability benefits. 

Although everyone’s journey through the PIP system was different, many people described remarkably similar experiences. 

In the group, many described the PIP process as stressful, inaccessible and difficult to navigate from the very beginning. For some, simply making initial contact was a challenge because the process relies heavily on telephone communication, creating an immediate barrier for people with hearing loss. Others spoke about the pressure of gathering supporting evidence within tight timescales and the emotional toll of having to repeatedly prove the impact of permanent or progressive conditions through regular reassessments. 

Another consistent theme was a lack of understanding of deafblindness as a distinct disability. Many felt that assessors didn’t fully appreciate the cumulative impact of living with both sight and hearing loss. They told us that the assessment often overlooks the additional planning, fatigue and support needed to carry out everyday activities safely, confidently and independently. 

Another theme that was spoken about was the significant financial impact of deafblindness. Beyond everyday living costs, many rely on specialist technology, smart home equipment, accessible transport, support when travelling and practical help around the home. These aren’t luxuries, they’re essential tools that enable people to live safely, maintain their independence and participate fully in everyday life. Yet many felt that the current PIP system doesn’t always recognise these unavoidable additional costs.

One finding stood out above all the others. Only one among the group found a way to identify themselves as deafblind within the consultation form by selecting ‘other’ from a list of disabilities. Everyone else selected separate hearing and sight impairments from the list provided, despite deafblindness being recognised as a distinct disability. It’s a small detail, but one that highlights a much bigger issue: despite there being recognition of deafblindness in law [1], public systems still don’t consistently recognise the unique experience of living with combined sight and hearing loss. A particular concern is the lack of understanding of the complexities within the compensatory nature of deafblindness. A person may have relatively mild sight loss alongside profound hearing loss. When each impairment is assessed independently, they may not meet the threshold for higher levels of PIP support. However, in reality, even a mild reduction in vision can significantly reduce a person’s ability to compensate for their hearing loss – for example, by making lipreading, visual signing, facial expressions, or environmental cues much harder to access. It is the combined effect of both impairments that creates the unique disability, not simply the severity of each in isolation. 

This demonstrates why deafblindness should be recognised as a distinct category within the PIP process and other public systems, rather than requiring people to fit into separate sight and hearing classifications that fail to reflect their lived experience. 

The group didn’t just talk about the challenges they face. They also shared practical ideas for making the system fairer, more accessible and less stressful. Suggestions included:

• Making better use of existing medical evidence already held across public services
• Introducing longer award periods for permanent conditions
• Ensuring assessments are carried out by professionals with a good understanding of deafblindness
• Improving accessible assessment options and exploring  a ‘disability passport’ unique identifier that would allow assessors to access existing medical and disability evidence  across government systems,  reducing unnecessary repetition for applicants. 

As the UK’s leading charity supporting people who are deafblind, Deafblind UK is proud to have contributed to the Timms Review and incredibly grateful to every member who took the time to share their experiences. Speaking openly about the challenges of navigating the PIP system isn’t always easy, and their honesty and generosity will strengthen our policy and influencing work as we continue to champion the needs of people living with deafblindness.

We hope the Timms Review will help shape a more accessible, person-centred PIP assessment process—one that better recognises deafblindness and reflects the real costs and challenges of living with combined sight and hearing loss. With a new UK Government now setting its priorities, there is a real opportunity to rethink how disability benefits are designed and delivered. We hope the voices of people living with deafblindness will remain central to those discussions. 

Deafblind UK will continue working with Government, policymakers and partners to ensure that the voices of people who are deafblind remain at the heart of future reforms. With a new Government led by Prime Minister Andy Burnham now setting its priorities, there is a real opportunity to build a more accessible, compassionate and person-centred benefits system. We look forward to working constructively with ministers and officials to ensure that the lived experience of people living with deafblindness helps shape future reforms and delivers lasting improvements for those who rely on PIP. 

Read our full briefing on this piece of work here.  

1 Deafblind people: guidance for local authorities – GOV.UK