Charities urge UK Government to guarantee lifetime disability benefits for people with terminal illness and progressive, life-limiting conditions.
People living with terminal illness and progressive, life-limiting conditions should not be forced to undergo stressful, costly and unnecessary disability benefit reassessments, says a coalition of more than 30 organisations, led by end-of-life charity Marie Curie, in an open letter to Sir Stephen Timms at the Department for Work and Pensions.
Sent to coincide with the Call for Evidence deadline for the Timms Review of Personal Independence Payments [28 May], the open letter describes the reform as a “clear and compassionate” way to protect people living with terminal illness and those with progressive life-limiting conditions. The coalition argues that PIP reassessments represent an unacceptable burden, forcing people already suffering with their health to prove they are unwell enough to receive support they will always need. Instead, they should have assured and constant financial support until they die, so they can focus on what really matters – staying as well as possible and spending time with loved ones.
Signatories include Age UK, Amnesty International, MS Society, Parkinson’s UK and the Trussell Trust among others.
It adds:
PIP is designed to help with the extra costs of disability, but for people who are dying or living with progressive, life-limiting conditions, reassessments can cause needless distress, uncertainty and financial anxiety at a time when every moment matters.
Reassessing people whose conditions will only worsen adds little value. Just 2% of PIP awards for people with Parkinson’s, dementia and Motor Neurone Disease are reduced on review, despite each assessment costing around £282, raising concerns about both the human and financial cost.
Lifetime awards for people in receipt of PIP via the Special Rules route are already in place in Scotland, showing a more compassionate system is both possible and practical.
Dr Sam Royston, Marie Curie Executive Director for Research and Policy, said:
“Too many people living with terminal illness and progressive, life-limiting conditions are being forced to prove just how unwell they are, which is simply wrong.
“These reassessments rarely change the outcome, but they cause real distress and uncertainty at a time when people should be focused on comfort, care and time with loved ones.
“The UK Government has a clear chance to fix this now. Ending reassessments and introducing lifetime awards for people with terminal and progressive, life-limiting conditions would create a fairer, more compassionate system that treats people with dignity.”
Marie Curie’s free national Information and Support Line can offer guidance and support for people living with terminal illness and those close to them, including information on benefits and financial matters. Call free on 0800 090 2309 or visit [www.mariecurie.org.uk/support].