The article aims to raise awareness, address common misconceptions and help ensure that people living with advanced cancer or another life-limiting illness receive the support available to them when it matters most.
When someone is living with advanced cancer or another life-limiting illness, navigating the benefits system can feel overwhelming. Yet many people are unaware that financial support may be available through the Department for Work and Pensions’ Special Rules for End of Life.
Research from Marie Curie suggests that one in three people who die from a chronic illness in England and Wales do not claim the benefits potentially available to them under the Special Rules. This equates to approximately 120,000 people each year missing out on vital support.
In this joint article, Society Matters and Tenovus Cancer Care explain the role of the SR1 form, who may qualify and how individuals, families and professionals can make the process as straightforward as possible.
What is an SR1 form?
The SR1 is a medical evidence form used to support a benefit claim under the Special Rules for End of Life. It provides the DWP with information about a person’s diagnosis, the progression of their illness and any treatment they are receiving.
The form must be completed by an appropriate healthcare professional, such as:
- a GP
- a hospital consultant
- a specialty or hospice doctor
- a senior specialist nurse, such as a clinical nurse specialist or advanced nurse practitioner.
The healthcare professional will usually send the SR1 directly to the DWP, although it may sometimes be given to the patient or their representative.
An important point is that completing an SR1 does not automatically start a benefit claim. The relevant benefit must still be claimed, and the claimant or their representative should make clear that they are applying under the Special Rules.
Who can qualify?
In England and Wales, the Special Rules apply where a person has a progressive disease and, as a consequence of that disease, it would not be unexpected if they died within 12 months.
This does not mean that a healthcare professional must provide an exact prognosis. DWP guidance encourages clinicians to consider whether they believe that their patient would live longer than 12 months.
Prognosis can be particularly difficult to predict with cancer, where people respond differently to treatment. There are no negative consequences for the patient or clinician if someone lives longer than expected.
People may also qualify while receiving ongoing treatment, including palliative chemotherapy, immunotherapy or radiotherapy. Receiving treatment does not automatically prevent the Special Rules from applying.
The change to the 12-month rule
The Special Rules were previously based on a six-month life expectancy. This was extended to 12 months:
- from April 2022 for Universal Credit and Employment and Support Allowance
- from April 2023 for Personal Independence Payment, Disability Living Allowance and Attendance Allowance.
The previous DS1500 medical form has also been replaced by the SR1.
Although the change has enabled more people to access support, campaigners argue that the fixed 12-month definition remains restrictive. In Scotland, there is no fixed timescale for devolved disability benefits. Instead, eligibility is based on a clinician’s judgement that the person has a terminal illness.
Which benefits are covered?
An SR1 can support a Special Rules claim for:
- Personal Independence Payment (PIP)
- Attendance Allowance
- Disability Living Allowance for children
- Universal Credit
- New Style Employment and Support Allowance (ESA).
The person must still meet the wider conditions of the benefit they are claiming. For example, Universal Credit is means-tested, while New Style ESA normally depends on the claimant’s National Insurance record.
The SR1 is therefore not a benefit in itself or an automatic entitlement to every form of support. It is medical evidence that allows eligible claims to be considered under a quicker and more supportive process.
An SR1 may also help someone access other local support. Councils can use it to fast-track a Blue Badge application where a terminal illness seriously affects mobility. A growing number of councils in England and Wales also offer terminally ill residents a Council Tax discount or discretionary relief, sometimes reducing the bill to zero. These schemes and their eligibility rules vary, so individuals and families should check what is available from their local council.”
How is the process different?
Depending on the benefit being claimed, the Special Rules can mean:
- faster processing
- fewer application questions
- no usual qualifying period
- no medical assessment in most cases
- automatic entitlement to particular components or groups
- higher rates of some benefits.
For PIP, someone accepted under the Special Rules automatically receives the enhanced rate of the daily living component. The mobility component is considered separately, so it remains important to explain any difficulties with moving around or planning and following journeys.
Attendance Allowance is normally awarded at the higher rate. For Universal Credit, the person should be treated as having limited capability for work and work-related activity, meaning they should not be expected to look for or prepare for work. Equivalent protection applies through the support group in New Style ESA.
What information does the SR1 include?
The healthcare professional will be asked to provide information about:
- the person’s diagnosis and other relevant conditions
- the date of diagnosis
- whether the person is aware of their diagnosis and prognosis
- when they were first thought to meet the Special Rules criteria
- the clinical features showing that the condition is severe and progressive
- treatment received, ongoing or planned.
The date on which the clinician believes the person first met the criteria can be important because it may affect when benefit entitlement begins.
What does the SR1 cancer-specific question mean?
Where someone has cancer, the SR1 asks for more specific information about the condition. This can include the type and stage of cancer, whether it has spread, how the person has responded to treatment and whether further treatment is planned.
A cancer diagnosis alone does not automatically mean that the Special Rules apply. The information should provide a clear clinical picture of whether the disease is progressive and whether the 12-month test is met.
Relevant information may include:
- metastatic or secondary cancer
- locally advanced or inoperable disease
- progression despite treatment
- a poor or limited response to treatment
- palliative treatment
- significant deterioration or frailty
- treatment focused primarily on symptom control
- no further disease-modifying treatment being available.
No single phrase is essential, and a person may still qualify while continuing treatment. The key question is whether the clinician considers that the Special Rules test is met.
Why are people missing out?
When the Special Rules work well, they can be one of the most effective parts of the benefits system, providing financial support quickly and with less stress. However, the process is not always routinely discussed with people who may qualify.
Common barriers include:
- patients and families not knowing that the Special Rules exist
- clinicians believing that an SR1 should only be completed when death is imminent
- difficulty discussing prognosis
- financial concerns not being discussed as part of someone’s care
- uncertainty over whether a GP, consultant or specialist nurse should complete the form
- delays obtaining medical evidence
- an SR1 being submitted without the relevant benefit claim.
The language used can also be difficult. Some people may know that their cancer is incurable or treatable but not curable, without describing themselves as terminally ill. Others may never have discussed a specific prognosis.
The 12-month test is not an expiry date or an exact prediction of how long someone will live. An award does not simply stop if the person lives beyond 12 months, and living longer than expected does not mean that the claim was incorrect.
Practical tips for avoiding delays
If you believe the Special Rules may apply:
- Ask a healthcare professional who understands the person’s condition whether they can complete an SR1.
- Start the relevant benefit claim promptly and make clear that it is being made under the Special Rules for End of Life.
- Do not assume that the SR1 automatically starts the benefit claim.
- Ask when and where the SR1 was sent and keep a note of the date.
- Do not wait unnecessarily for the SR1 before beginning the benefit claim. Tell the DWP that the medical evidence has been requested.
- Explain mobility difficulties separately when claiming PIP, as the mobility component is not awarded automatically.
- Seek a full benefit check, as an award may also affect other benefits, additions, Council Tax support or help available to a carer.
- Contact the relevant benefit office if there is an unexplained delay.
Financial support should be part of the conversation
The finding that around 120,000 people may die each year without claiming support demonstrates that this is not simply a matter of individual awareness.
Healthcare professionals need clear information and confidence to use the SR1 process. Conversations about financial difficulty and benefit entitlement should also form part of good, holistic care for people living with advanced cancer and other life-limiting illnesses.
These conversations must be handled sensitively and at the person’s pace. Asking about the Special Rules is not about giving up hope. It is about protecting someone’s financial dignity and ensuring they receive the support available to them when it may matter most.
Further information and support
Further guidance is available from:
About Tenovus Cancer Care
Tenovus Cancer Care is a Wales-based charity giving voice, support and connection to people affected by cancer across Wales. We’re here for people living with cancer, their families and loved ones, providing expert advice, emotional support, and practical help when it’s needed most.
Our services are designed around the realities of cancer and the challenges it can bring. We help people access support as close to home as possible, from specialist cancer information and advice to financial support, counselling, and practical guidance. Our experienced cancer nurses provide trusted information, reassurance and a listening ear, while our Benefits Advice service helps people navigate the financial pressures of cancer and access the support they’re entitled to. Our counselling services offer a safe space to talk about the emotional impact of cancer.
We know that community and connection can make a real difference too. Through our community-based Sing with Us choirs, people affected by cancer can come together, build confidence, make friends and enjoy the benefits of singing in a welcoming environment. Around 900 people regularly attend our choirs, helping to reduce isolation and create a sense of belonging.
Alongside our frontline services, we make sure the voices and experiences of people affected by cancer are heard. Our policy and influencing work uses community insight to highlight inequalities, campaign for better cancer care and influence decision-makers across Wales. Through the All-Wales Cancer Community, we bring people and organisations together to help shape the future of cancer services, policy and research.
We work closely with partners, healthcare professionals, the NHS and governments to improve cancer experiences and outcomes across Wales. We believe people affected by cancer should be at the heart of decisions about their care and the future of cancer services.
Our work is made possible by our staff, volunteers, supporters, fundraisers, retail teams and partners. Together, we help people affected by cancer access the advice, support and connection they need.
Whether someone needs information, financial advice, emotional support, guidance through cancer services or simply a place to connect with others, Tenovus Cancer Care is here. Through our services, communities, and influencing work, we’re helping create a Wales where everyone affected by cancer can access the support they need, feel heard and never have to face cancer alone.
Visit Tenovus Cancer Care ‘s website to explore their services and support.
