Inquiry into PIP and Motor Neurone Disease

By Bernadette Meaden
February 24, 2017

There can be few things more devastating than to be diagnosed with Motor Neurone Disease (MND).  An incurable and degenerative disease which attacks nerves in the brain and spinal cord, MND means people lose the ability to speak, swallow and use their limbs. It’s a severely disabling and ultimately fatal disease.

If there is any illness which should automatically qualify an applicant to receive support from the welfare state, surely MND is it. Such support would give people a modicum of financial security as they come to terms with what lies ahead of them, and make plans to live what remains of their life as well as they can. We know that a quarter of UK families have less than £95 in savings. Imagine such a diagnosis, combined with that level of financial insecurity.

Personal Independence Payments (PIP) are designed to help with the extra costs of living with a disability – one would have thought that an MND diagnosis would, in a humane system, automatically qualify a person for such support. But that would be in a humane system, and sadly that is not what we have at present. 

We now have a system in which the All-Party Parliamentary Group on MND has launched an inquiry because, “There is evidence that people with MND can find it hard to access PIP in a timely way”. The inquiry is calling for people living with MND to share any problems they have experienced claiming PIP. The information will be used “to make recommendations to Government and others about how the system can be improved.”

Let’s just think about this. At probably the worst moment in their lives, people diagnosed with a progressive, incurable disease are expected to wrestle with an assessment system that is proving a shambles, designed primarily to save money by cutting or removing support from hundreds of thousands of sick or disabled people.

There is provision in the system for people who are terminally ill. Claims made under the Special Rules for Terminal Illness are fast-tracked. But the DWP only regards a person as terminally ill if their death can “reasonably be expected” within six months. The Motor Neurone DIsease Association told Parliament's Work and Pensions Conmmittee, "Although Motor Neurone Disease (MND) is a terminal illness, and the Special Rules system nominally exists for those who are terminally ill, it does not work reliably for people with MND."

This is what years of welfare reform and austerity have produced. A system so obsessed with cutting ‘welfare’ that in a rich country even Motor Neurone Disease isn’t considered serious enough for a person to be given automatic and timely support.

The APPG survey on PIP for people with MND can be accessed here

The Motor Neurone Disease Association provides help and support, which can be accessed here

* If these issues affect you and you are in distress, please call the Samaritans helpline on 116 123. Calls are FREE and the helpline is open 24 hours a day.

© Bernadette Meaden has written about political, religious and social issues for some years, and is strongly influenced by Christian Socialism, liberation theology and the Catholic Worker movement. She is an Ekklesia associate and regular contributor. You can follow her on Twitter: @BernaMeaden



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