What the new 'Special Rules' for benefits payments mean for people with a terminal illness and practitioners

Previously access to financial benefits for those who are terminally ill was limited to those who have 6 months or less to live, but changes to the ‘Special Rules’ for benefit payments were extended to people who have 12 months or less. Although there isn’t a specific benefit for people who are terminally ill, these changes mean that certain benefits can be paid much more quickly, at a higher rate and without a medical assessment.

The changes apply to these benefits:

• Attendance Allowance – disability benefit for pensioners
• Personal Independence Payment (PIP) – disability benefit for people of working age
• Disability Living Allowance (DLA) – disability benefit for children aged under 16
• Employment and Support Allowance (ESA) – for working age people who are too poorly to work
• Universal Credit – a means-tested benefit for people of working age.

For people living with cancer, this means that as of 4 April 2022 they were be able to access all five of these benefits (where applicable) if their prognosis is 6 months or less. Universal Credit and Employment and Support Allowance (ESA) are now available to those with 12 months or less to live. I believe this is a positive step forward in how end of life care is viewed, providing enhanced support for those in the last year(s) of life as well as those in the last months.

At Macmillan we understand the significant financial burden cancer can have on people’s lives, bringing with it additional uncertainty for people living with cancer and their family. So, if your patients have any questions or concerns affecting their treatment or care, we are here to listen on our Macmillan Support Line, whether they need help with finances, work or other queries that are affecting their care or treatment.

Boots has also worked with Macmillan Cancer Support and the NHS to launch a Palliative Care Service in its pharmacies. This service provides ease of access to vital medicines, specialist pharmacist advice, and support to patients and their carers at the end of life by developing an online stock-checking tool and maintaining stock of required medicines. To support the implementation of this new service, all 4,200 Boots Macmillan Information Pharmacists have received additional palliative care training.

These changes provide opportunities for us to better support those in the last years and months of life. We are now able to educate and discuss financial support with patients at an earlier stage, providing faster access and higher payments to some benefits.

When deciding which route to take, clinically I tend to ask myself 'Would I be surprised if this person died in the next year?’. If the answer is no, then this should mean completing a DS1500 form, because it is almost impossible to predict the last 6 months of a person’s life.

If the answer is yes, and you believe someone is in the last year(s) of life, then I suggest completion of the new SR1 form. This allows those with a life expectancy of 12 months or less to get faster access Universal Credit and Employment and Support Allowance. The DWP has provided new guidance on the ‘Special Rules’ changes for health and social care professionals.

As healthcare professionals, we can often be overly optimistic when it comes to predicting disease outcomes. We have an internal professional estimate and the one we give to the patient – both are wrong and both have optimism bias added. We typically focus on the next line of treatment and do not often think beyond this, especially when it comes to end of life plans a patient would benefit from having in place sooner rather than later.

Patients deserve better co-ordination of care into the last year(s) of life and this change gives us a brilliant opportunity to help them benefit from end of life financial support while having treatment, so they can make the most of the last year(s) of life.

For more information about these changes and considerations in primary care, please review comments from Dr Anthony Cunliffe (Macmillan National Clinical Adviser in Primary Care).

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