About Difference North East
Difference North East is a policy and campaigning organisation representing disabled people across the North East. We work to reduce discrimination, increase access and inclusion, and create a more equal region.
We are a Deaf and Disabled People’s Organisation (DDPO) led by disabled people, and our work is informed by the social model of disability.
PIP – Experiences of Disabled People in the North East: About this response
This response draws on experiences gathered through an open call for evidence in May 2026.
Difference North East members, alongside other disabled people across the North East, were invited to share experiences of moving through the PIP process as part of this engagement activity.
People shared experiences of:
- Applying for PIP
- Reassessments
- Mandatory reconsideration and appeals
- Moving from DLA to PIP
- Communication and accessibility barriers
- Navigating linked systems and services
Responses were reviewed to identify the recurring themes across the experiences shared. We recognise there will be additional experiences and issues affecting people moving through the PIP process beyond those raised within this response.
Some issues raised in responses related not only to whether support or flexibility existed in principle, but also to whether people were aware of it, able to access it in practice, or experienced it as accessible while navigating the process.
Any quotes included are verbatim and anonymised.
Executive summary
Across responses, people frequently described challenges not only relating to decisions and outcomes, but also the experience of claiming PIP itself.
Recurring themes included:
- Feeling pressure to repeatedly justify impairment and support needs.
- Emotional impacts linked to lengthy, repeated or difficult assessment interactions.
- Questions and assessments do not always capture the realities of disabled people’s everyday lives, including fluctuation, cumulative impact and recovery following activities.
- Communication and accessibility barriers that affected people’s ability to start, understand or take part in the process.
- Needing support to navigate forms, questions, evidence gathering, assessments and appeals because the process was difficult to manage alone.
- Concerns that young people moving from DLA to PIP are being moved into an adult assessment process before it reflects their independence, communication and support needs.
Neurodivergent people were strongly represented among respondents, with recurring themes including communication barriers, question interpretation, overwhelm and recovery following assessments. Responses suggested that these experiences can create additional barriers to engaging with the process independently.
PIP – Experiences of Disabled People in the North East: What people told us about proving and explaining impairment
Across responses, people frequently described feeling pressure to repeatedly justify the impact of their impairment and support needs during assessments.
This did not appear to relate only to disagreement with decisions or outcomes. Responses frequently described pressure around how experiences were explained, interpreted and evidenced within assessments.
People described worrying about saying the “wrong” thing, feeling uncertain about how experiences would be interpreted and feeling that questions were sometimes experienced as encouraging people to focus narrowly on what they could or could not do, rather than the wider barriers they experienced in daily life.
Several responses also suggested that interactions with the system could leave people feeling disbelieved, scrutinised or under suspicion.
What people said
“We were pushed to think of scenarios which seemed irrelevant and felt like we weren’t going to be able to say what they wanted to hear.”
“I appreciate that I need to explain the barriers or impacts, but I should not be embarrassed or humbled to explain my disability.”
“The whole process feels like it is set up to catch you out and to deny you PIP.”
What people need
- More opportunities for people to explain experiences in ways that reflect their real day-to-day lives.
- Assessment processes that avoid people feeling they need to repeatedly defend or justify their impairment and support needs.
- Assessments and decisions that better reflect the barriers people experience in daily life.
PIP – Experiences of Disabled People in the North East: What people told us about the emotional impact of the process
People described stress, overwhelm, anxiety and exhaustion linked to assessments, reassessments and appeals.
Several responses suggested this was linked to lengthy appointments, repeated questioning, the need to repeatedly explain experiences, and uncertainty about what might happen next.
Responses suggested that emotional impacts often built over time, particularly where people experienced reassessments, mandatory reconsiderations or appeals.
Several responses also described impacts continuing after assessments themselves, including exhaustion, shutdown, anxiety and reluctance to re-engage with the process.
What people said
“After the call he lay under his duvet for 2 hours, unable to communicate or do anything. That was a direct impact of the experience on the call.”
“Transition from DLA to PIP was one of the most stressful experiences of my life.”
“Listing and going through all the things that I cannot do due to my illness made me realise how much it is affecting my life and made me feel worthless.”
What people need
- Assessments, reassessments and appeals to be designed to reduce avoidable stress, overwhelm, and exhaustion.
- Reducing repeated questioning, repeated explanations of distressing experiences and unnecessary uncertainty throughout the process.
PIP – Experiences of Disabled People in the North East: What people told us about assessment questions
Several responses suggested that questions and assessment approaches did not always allow people to explain the realities of their everyday experiences.
People described situations where individual activities could be managed in isolation, while the wider impact, repetition, recovery time or consequences were harder to explain or evidence within standardised assessment approaches.
Some respondents also described being asked hypothetical questions that did not feel reflective of their day-to-day experiences.
People also described difficulties being expected to provide examples and explanations quickly during assessments, without enough processing time. One person reflected that they later realised there were more accurate or meaningful examples they had not been able to explain during the assessment itself. They suggested that receiving clearer information or examples beforehand may have helped them prepare responses that better reflected their experiences.
Neurodivergent respondents and family members repeatedly described difficulties explaining cumulative impact, overwhelm and the wider effects of repeatedly managing difficult situations within standardised assessment approaches.
What people said
“The call didn’t give us a chance to explain the real issues – it just worked through standard questions which did not seek to apply to autistic overwhelm and burnout.”
“He would cope with each scenario in isolation but lots of those situations are what had led to his burnout and not being able to attend school.”
What people need
- Questions and assessments that better reflect how different impairments affect day-to-day lives.
- Assessment approaches that allow people to explain experiences in context, rather than through isolated or hypothetical scenarios.
- More flexibility for people to explain experiences and barriers in ways that feel relevant to their daily lives.
- Clearer guidance before assessments about the types of examples people may be asked to give and the kinds of information that may be relevant.
PIP – Experiences of Disabled People in the North East: What people told us about communication and accessibility
Neurodivergent experiences appeared repeatedly across responses, particularly in relation to communication methods, interpretation of questions, executive functioning and overwhelm during assessments.
People described barriers linked to phone-first or phone-dependent parts of the process, limited processing time during assessments and managing lengthy or emotionally demanding interactions.
Communication and accessibility barriers were also described as affecting some people’s ability to begin or navigate the process independently from the outset.
What people said
“To start the process required us to make a phone call – something my autistic son was not able to do so I needed to do it for him.”
“I cannot start the process because making a phone call is too difficult for me due to executive dysfunction.”
What people need
- More flexible ways for people to begin and engage with the process, including wider availability of online routes rather than relying primarily on phone calls.
- Assessment approaches and communication methods that better reflect neurodivergent experiences, including overwhelm, burnout, executive functioning, communication differences and the need for additional processing time during assessments.
- More proactive information about support options, including appointees, advocacy and where people can access help early in the process.
PIP – Experiences of Disabled People in the North East: What people told us about young people moving from DLA to PIP
People raised wider questions about young people moving from DLA to PIP at age 16 and whether adult assessment processes always reflect young people’s communication styles, support needs and levels of independence at that stage of transition into adulthood.
Responses suggested that some young people relied heavily on family members to interpret questions, explain experiences and navigate a system designed around adult expectations and communication styles.
Some experiences also reflected concerns that assessment approaches focused heavily on describing impairment rather than understanding the barriers young people experienced in daily life.
While appointees can support young people through the process, responses suggested this may not fully address the wider challenges related to readiness to engage with an adult assessment system.
What people said
“My daughter isn’t really able to say what it is about her disability that means she needs extra support – that’s like asking her to think of the hardest parts of her life and explain them to a stranger when she would struggle to even explain them to me. The entire PIP process is too focused on what’s ‘wrong’ with someone, not what makes life hard for them. If she had to navigate this without me, she wouldn’t be able to.”
What people need
- Consideration of whether the transition from DLA to PIP should take place at age 18 rather than 16.
- Assessment approaches for young people that better reflect communication styles, support needs and levels of independence during transition into adulthood.
- Assessment approaches that focus more on understanding barriers experienced in daily life, rather than relying heavily on young people describing themselves in terms of what they cannot do.
What people told us about support and advocacy
Many responses described people needing support to understand questions, gather evidence, manage communication with the system, navigate assessments and pursue appeals.
People described relying on family members, Citizens Advice, welfare rights services, advocacy organisations and others to help them move through the process.
Several responses suggested that support was often necessary because questions, forms and assessment processes could be difficult to understand or navigate independently.
Responses also highlighted concerns that support itself could be difficult to access quickly and that waiting for advice, advocacy or supporting evidence could create additional pressure and delays.
What people said
“Filling in the form is a very stressful process because explaining the same thing in different words can yield wildly different outcomes. To make sure we do this well, we have to rely on Citizens Advice, whose resources are already stretched thin.”
“The time limit imposed on returning the form never gives enough time to get support from Citizens Advice. The questions are open-ended without giving much indication of what facts are relevant, how much information is needed, and what needs to be evidenced and in what way.”
What people need
- More proactive information about support options, advocacy and routes through the process.
- Processes, forms and assessments that are easier to understand and navigate without needing specialist support.
- Clearer and more flexible approaches to timescales and deadlines where people need additional time to access advice, advocacy, support or supporting evidence.
Recommendations
Across responses, people identified several practical changes they felt may improve experiences of the PIP process, including:
- More flexible ways for people to begin the process, including wider availability of online routes rather than relying primarily on phone calls.
- Assessment approaches and communication methods that better reflect neurodivergent experiences, including overwhelm, burnout, executive functioning, communication differences and the need for additional processing time during assessments.
- Clearer guidance before assessments about the types of examples people may be asked to give and the kinds of information that may be relevant, so people have more opportunity to prepare.
- Reducing repeated questioning and repeated explanations of distressing experiences across assessments, reassessments and appeals.
- More proactive information about support optionas, advocacy, appointees and where people can access help, alongside processes that are easier to understand and navigate without needing external support.
- Clearer and more flexible approaches to timescales and deadlines where people need additional time to access advice, advocacy, support or supporting evidence.
- Consideration of whether transition from DLA to PIP should take place at age 18 rather than 16, alongside assessment approaches and specialist understanding that better reflect young disabled and neurodivergent people’s communication styles, support needs and levels of independence during transition into adulthood.
Thank you
We would like to thank everyone who took the time to share their eaxperiences as part of this response.
We recognise that many of the experiences shared were deeply personal, and we are grateful to everyone who trusted us with those experiences.
Your contributions have directly shaped this response and the recommendations it includes.