A summary of the review into PIP, and RAIRDA’s draft response
Earlier this year, the government launched the Timms Review, aiming to ensure that Personal Independence Payment (PIP) is “fair and fit for the future in a changing world, and helps support disabled people to achieve better health, higher living standards and greater independence, including through employment”. This call for evidence opened on 19 March 2026 and closed at 11:59pm on 28 May 2026.
The review asked for insight and evidence from organisations and individuals that have information relevant to the reform of PIP. This could take the form of written submissions, as we have drafted below, and existing data or reports. We shared the Rare Care Matters report alongside this submission.
The Department for Work and Pensions (DWP) published the initial Terms of Reference in June 2025. The Review aims to report to the Secretary of State for Work and Pensions in autumn 2026 and will report its outcomes to Parliament.
In summer 2025, RAIRDA submitted a consultation response to the Government’s Pathway to Work Green Paper, which was looking to reform PIP and other benefits in order to encourage people to re-enter the workforce. In 2024, we developed a position paper detailing RAIRDA’s position on PIP and benefits as a whole. These two documents have formed the basis of the response drafted below.
The following questions were provided by the review’s steering committee to help shape submissions to the call for evidence.
- How effectively is PIP delivering on its intended role and purpose?
- Does the PIP assessment, including the assessment criteria, effectively capture the impact of long-term health conditions and disability in the modern world, and provide fair access to the right support at the right level across the benefits system?
- What is the experience of people claiming PIP and does this vary for different groups of people?
- What has changed in wider society and the workplace since 2013 (and might be expected to change in the future), and how has this impacted PIP and does PIP need to change accordingly?
Our submission
This response is submitted by the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA). Rare autoimmune rheumatic diseases (RAIRDs) are a range of chronic conditions in which the body’s immune system causes inflammation which may lead to damage in its own tissues, often in multiple organs throughout the body simultaneously. This can lead to tissue or organ damage, which can be fatal. RAIRDs can affect many parts of the body, including the joints, skin, lungs, kidneys, brain, peripheral nerves, eyes, hearing, upper airways and heart. Everybody’s disease is different.
RAIRDs can be split into two groups: autoimmune connective tissue disorders (lupus [also known as SLE, systemic lupus erythematosus], scleroderma [also known as systemic sclerosis], myositis, Sjögren’s disease) and systemic vasculitis (ANCA-associated vasculitis, giant cell arteritis, Takaysu’s arteritis, IgA vasculitis and Behçet’s disease).
How effectively is PIP delivering on its intended role and purpose?
For people with RAIRDs – a combined group of over 170,000 people in the UK – PIP provides essential support by helping individuals cover the costs associated with daily living and mobility, which are often exacerbated by the unpredictability and severity of their conditions. Importantly, the symptoms related to their conditions can vary throughout the day or from day to day. These costs include regular transport to specialist appointments, tailored diets, adapted clothing, increased heating costs due to temperature sensitivity or reduced mobility, and support with daily activities – things that cannot be provided through other statutory services. In particular, the rare nature of RAIRDs means that many patients have to travel significant distances to access specialist care – accruing costs that cannot be covered through other means.
Beyond the direct payment, PIP also acts as a gateway to a wide range of additional entitlements vital to people with RAIRDs, including the Disabled Persons Railcard, Passport to Leisure, and access to disability support at public events and venues. Through these mechanisms, the receipt of PIP can prevent deterioration in health and functioning, supports independent living, and may reduce pressure on NHS services by enabling people to self-manage their conditions where possible. Loss of PIP therefore has a disproportionately large impact on independence and social inclusion that extends well beyond the monetary value of the benefit itself.
The cumulative impact of losing PIP can be especially challenging for people with fluctuating, invisible, or complex conditions like RAIRDs. This is compounded by the fact that, as RAIRDA has previously highlighted, people living with rare conditions have too often been forgotten when it comes to policy or investment in health services, with NHS services remaining focused on common conditions. Where PIP is functioning as intended, it compensates for some of these systemic gaps; where it fails, it leaves an already underserved population further exposed.
Does the PIP assessment effectively capture the impact of long-term health conditions and disability, and provide fair access to the right support?
For people with RAIRDs, the current assessment has significant limitations. The existing functional assessment model is broadly the right approach – RAIRDA maintains that PIP eligibility should continue to be based on the functional impact of a condition, not on diagnosis alone. This is essential because people living with RAIRDs can often suffer substantially and need greater levels of support prior to diagnosis; once they have a diagnosis and can access treatment (including immune-mediating), their quality of life can improve. Even post-diagnosis, the fluctuating nature of RAIRDs means a diagnosis alone does not capture the varied impacts of the condition on an individual.
However, the functional assessment as currently designed fails to go far enough. The daily living activity descriptors do not encapsulate the impact of fatigue and how debilitating it can be for people with RAIRDs. Similarly, cognitive impairment and brain fog, which are recognised symptoms of many autoimmune diseases, can hinder people’s ability to complete assessment forms or participate fully in conversations, meaning their needs may be systematically underrepresented. The use of a symptom diary is recommended as one tool to help people present a clearer, more accurate picture when being assessed.
The cumulative scoring model works well for those with fluctuating and complex conditions. For example, in Sjögren’s disease, a person may appear entirely “normal” while experiencing acute nausea and bowel issues that make leaving the house incredibly challenging. This kind of diffuse, invisible disability is poorly served by single-activity thresholds.
The RAIRDs community has also raised specific concerns about proposed alternatives to cash payments for PIP. People with RAIRDs were concerned that a receipt-based system would add stress and a feeling of scrutiny to people already struggling with ill health, not to mention the likelihood of the administrative costs of a receipt-based system restricting any savings it is perceived to introduce. The potential stigma and loss of agency associated with vouchers and receipts was seen as likely to negatively impact mental health, in particular through the mental burden of having to justify their expenditure to individuals without the knowledge or capacity to understand the broad negative impact of living with a RAIRD.
What is the experience of people claiming PIP, and does this vary for different groups?
For people with RAIRDs, the experience of claiming PIP is shaped by several compounding difficulties. Assessments based on a single interaction or observation often fail to capture the fluctuating nature of autoimmune and rheumatic conditions. This fluctuating nature of their conditions also means that temporary periods of improved health create fear of losing entitlement permanently, discouraging many from attempting work or engaging honestly with the system, even when they feel able.
Given the rare nature of the diseases represented by RAIRDA, patients report a fear of disbelief and exhaustion from having to repeatedly explain and prove their diagnosis and its effects. It has been suggested that the assessment process could be helped by the inclusion of a flag on the system next to patients with rare diseases, alerting assessors that they are dealing with a rare and often complex and serious disease. Such flagged diseases would need “higher level” assessment, such as case managers specifically trained in rare or serious diseases. Frequent reassessments are experienced as unnecessary, invalidating, and damaging to mental health — particularly given that many RAIRDs are lifelong and incurable, making repeated reassessments counterproductive and placing additional strain on both patients and clinicians.
People with RAIRDs also face structural barriers within the claims process itself. Cognitive impairment can hinder the ability to complete forms or participate fully in support conversations. Inaccurate or incomplete information is sometimes recorded on benefit-related forms due to time pressures on GPs, poor access to records, or limited clinical understanding of rare conditions, as well as due to the disconnect between primary and secondary health care where treatment of some aspects of RAIRDs may take place out of sight of primary healthcare professionals.
Experience varies significantly across different groups. Geographic inequalities in specialist care affect the quality of clinical evidence available to support a claim. Since the quality and completeness of clinical evidence underpinning a PIP claim depends heavily on where someone lives and who treats them, these geographic inequalities translate directly into unequal outcomes in the benefits system. Autoimmune diseases disproportionately affect women (80% of those with an autoimmune disease are women), and some RAIRDs (for example lupus) disproportionately affect people of Black, South Asian or Chinese ethnic origin, groups that already face additional barriers to timely diagnosis, further compounding inequality of access.
What has changed in wider society and the workplace since 2013, and does PIP need to change accordingly?
The pandemic exposed and deepened existing inequalities for people with complex chronic conditions, and a PIP system designed in 2013 is not well equipped to respond to this changed landscape.
There is now also much greater clinical recognition of symptoms such as fatigue, brain fog, and cognitive impairment as disabling features of autoimmune and chronic conditions — recognition that the current PIP assessment criteria do not yet reflect. The inclusion of these symptoms in assessment is important, as many claimants may be able to complete a task once, but cannot do so safely, repeatedly, reliably, or within a reasonable timeframe.
The growth of flexible and remote working since 2013, accelerated significantly by the pandemic, is also relevant. People with RAIRDs who are well enough to work benefit from flexibility in the workplace such as later start times, reduced hours, and spread working days to manage symptoms like morning joint and/or muscle stiffness which impairs their ability to function.
Any policy that encourages work must be framed positively and delivered in a way that is flexible, compassionate, and responsive to the diverse needs and fluctuating health of this population. Support for engaging in work should be meaningful and tailored to each individual’s circumstances, rather than punitive or coercive, and must remain optional rather than positioned as a condition for retaining benefit entitlement. With the modern reality of remote working, employment is no longer a binary concept of being either “fit” or “unfit” for work. Many disabled people are able to work intermittently, flexibly, or with adjustments. PIP should support these attempts to participate in employment and society, rather than penalising them. This aligns with current disability employment policy and wider discussions around flexible participation in work. To address the very real fear of attempting work, there must be a clear and reliable guarantee that individuals can revert to their previous benefit levels if their health deteriorates.
As much of the PIP system has become increasingly digital, it is important to recognise that many claimants experience barriers to accessing online systems due to; brain fog, visual impairment, and cognitive dysfunction, which can make digital processes inaccessible or significantly more difficult for some disabled people.
The NHS has also changed significantly since 2013. Individuals with RAIRDs often receive highly specialised, costly treatment (immune-modulating biologic) within the NHS following comprehensive diagnostic and functional assessments. The DWP should make better use of existing NHS-generated evidence, including records of biologic treatments and management by multidisciplinary and multispecialty teams, to inform eligibility decisions, rather than requiring individuals to repeatedly demonstrate the impact of their condition through separate processes. As RAIRDA has consistently called for, better co-ordination of care, including increased availability of multidisciplinary clinics and specialised regional MDT meetings, is needed to address the complex needs of people with RAIRDs; a reformed PIP should be designed to work in concert with this evolving model of specialist NHS care, rather than duplicating its processes or placing additional burdens on patients and clinicians alike.
Finally, past failures in policy implementation have led to mistrust, especially among people with rare and poorly understood conditions. Any future reforms must be developed in partnership with patient organisations and those with lived experience. Co-design and transparency are essential in ensuring that safeguards are credible and that the system is trusted to work as intended.
For people with RAIRDs, a fair PIP system must recognise fluctuating and invisible disability, make appropriate use of specialist clinical evidence, reduce unnecessary reassessments for lifelong conditions, and support – rather than penalise – attempts to participate in work and society.