A system that needs to change
When brains go wrong, lives can too. Neurological disorders are often serious and almost always frightening.
As President of the Lincolnshire Brain Tumour Support Group, meeting people recovering from cancer, I have learned what they endure and, along with the All-Party Parliamentary Group for Acquired Brain Injury, worked to bring a debate to the House of Commons on the subject of brain injuries and their impact on everyday life.
So, last week, I was struck by the significance of Madeleine Moon MP’s much-needed Bill. At its core is the plight of those with motor neurone disease - one of the most terrifying neurodegenerative disorders; it slowly shuts down the body, eventually ending the lives of sufferers. The slow development of this fatal condition means that those affected, over time, cut down much of their routine and for many that will mean coming to depend on benefits.
The introduction of Personal Independent Payments (PIP) is a necessary welfare reform. Nevertheless, due to the need for personal tests - so that benefits can be tailored to recipient’s needs - extra stress and hurt can result.
As a degenerative disease slowly wears a person down, their benefits should continually alter to adjust to changing needs, but this means repeated testing. Every time someone has to reduce what they do, they are obliged to return to the benefit office to go through more hoops and clear more hurdles.
The law already makes allowance for those who are terminally ill through the issue of a DS 1500 form, with implicit entitlement to benefits. However, such awards have a six-month eligibility criteria. To put it plainly: the six-month criteria lets down terminally ill people as conditions like motor neurone disease – with decline and death inevitable - can last far longer than half a year.
James Douglas, who met Parliamentarians earlier this year, was ill-served by the present system. At 30, after moving into a new home with his wife and baby son, James was diagnosed with motor neurone disease and told he would not live to see his 32nd birthday.
Struggling with work, he was forced to reduce his hours, though this was financially crippling for his family. He was consistently scored at zero in PIP tests and only weeks later given a DS 1500 form to claim benefits for the terminally ill.
This is far from an isolated case and, for too many, Mrs Moon’s poignant description of ‘emotional chaos’ is apt. The solutions are simple: extend the compass of DS 1500 and make clear that doctors should grant anyone diagnosed with a terminal illness the ongoing means to claim benefits, avoiding the chaos of further obligatory tests.
At present, we are letting down people who are terminally ill, but with a simple change we can help them to live their last days in peace, which is precisely why I support Madeleine Moon’s Bill.
