'Cruelty by Design' - changes to rules for terminally ill people must be reversed.

When a loved one is given a terminal illness diagnosis, we would expect them to be given fair and dignified treatment by the benefit system in their final weeks of life - and for many years this was the case, with disability benefits claims for terminal illness cases being fast-tracked through the system.

However, Citizens Advice Gateshead's Research and Campaigns team has uncovered a disturbing policy change which means the previous fast-tracking system has been removed. This has resulted in some cases, which previously would have taken only 10 days, now taking up to 13 weeks to be resolved.

We have also discovered cases where critical forms have gone missing and even cases where terminally ill patients have been asked to find work to continue receiving support.

Case Study: Terminally Ill Man Risks Losing Universal Credit Due to Identity Verification Barrier

A terminally ill client, currently under hospice care and largely bedbound, is facing the devastating prospect of losing access to Universal Credit (UC) due to a rigid identity verification requirement by the Department for Work and Pensions (DWP).

Despite the DWP being in possession of the client’s SR1 form—submitted to both the Personal Independence Payment (PIP) team and the local Jobcentre, which clearly outlines the severity of his condition, the client has been instructed to attend a face-to-face appointment at the Jobcentre to verify his identity. This demand is not only medically unfeasible but also deeply distressing for the client and his support network.

The client is currently being supported by a local hospice community team, who are in the process of installing a hospital bed in his home. He is housebound and in no condition to travel.

The UC Helpline has refused to engage with the client’s representative, despite a journal entry explicitly authorising the representative to speak on his behalf. Without urgent intervention or a compassionate workaround from the DWP, this man’s UC claim is at risk of failing, denying him vital financial support at the end of his life.

We are calling on the Government to:

• Reinstate the fast track processing for all SR1 claims with a strict timeframe. This is a critical first step to ensure timely support for terminally ill patients.
• Create a dedicated SR1 pathway for all related benefits (Pension Credit, Carers' Allowance). This will streamline the process for clients and ensure they receieve all necessary benefits
• Enhance communication channels with dedicated SR1 helplines and case tracking for clients and advisers, providing timely and compassionate handling.
• Introduce flexibility in consent and verification processes to accommodate terminally ill clients and their carers.
• Implment proactive DWP follow-up when SR1s are received with a corresponding claim, so no client falls through the cracks.

You can read more about this in our report 'Investigating Special Rules for claimants with terminal illness'