Benefits Rules for the Terminally Ill need changing. They don’t have time to waste!

Today is Global MND Awareness Day when we highlight the need to raise awareness of a disease which in the UK kills on average around six people per day. MND or Motor Neurone Disease, is a fatal, rapidly progressing disease that affects the brain and spinal cord.   It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.   It can leave people locked in a failing body, unable to move, talk and eventually breathe.  It affects up to 5,000 adults in the UK at any one time.   Currently there is no cure.

Over the past decade or so I have been privileged to be part of a campaigning network which seeks to improve treatment and services to those living with this condition. Recently BBC News did a feature on three sportsmen each of whom are living with MND. Former Leeds Rhino’s legend Rob Burrow, footballer Stephen Darby and Scottish Rugby and British & Irish Lion, Doddie Weir who fronts the My Name’5 Doddie Foundation. It has been at the forefront of a campaign called United to End MND which seeks to persuade the Government to increase the amount of money being spent on research into MND which could include potential benefits for other acquired neurological conditions such as Parkinson’s and Multiple Sclerosis. Currently Government spending stands at less than £5 million a year. The campaign which has already attracted over 100,000 petition signatures and celebrity backing from film star Hugh Grant, GMB presenter Charlotte Hawkins, entrepreneur and ‘Dragon’ Deborah Meaden, and broadcaster Jeremy Vine, is calling for £50 million over five years to ensure gains made in research can be accelerated in the hope of finding an effective treatment and ultimately a cure to end MND once and for all.

Another ongoing campaign being run in conjunction with Marie Curie is to change the rules on benefit payments for terminally ill people known commonly as #scrap6months. Currently benefit rules for terminally people stipulate that there must be an expectation of death within six months in order to attract the higher rate of disability benefits without need for re-assessment. Not only is this grossly unfair, but for some terminal illnesses such as cancer and MND, from diagnosis to death can often be longer than six months and is far from an exact science. Recently The Guardian published a story which highlighted how terminally ill people were being made to suffer financially due to strict interpretation by DWP Assessors of the rules around terminal illness in rejecting of initial claims for higher rate disability benefits. Many of these assessors are not medically qualified and routinely ignore the supporting evidence provided by qualified clinical staff forcing some claimants into a lengthy appeals process – if they live long enough – causing further stress to already vulnerable people. The paper reports that data collected between April 2018 and October 2019 raised concerns about how the DWP recognised when someone was approaching the end of life. It is estimated that in this period 1,860 people died within six months of having their claims rejected.

Former DWP Secretary, Amber Rudd, instigated a review of how the benefits system supported those living with terminal illness. This commenced in July 2019, and although now completed the Government are withholding the findings despite calls to do so not only from both charities, but also the All-party parliamentary group (APPG) on MND, currently chaired by Conservative MP for Northampton South, Andrew Lewer. Despite repeated questions to ministers in the House of Commons, it seems the Government is still no nearer sharing the findings which means that for people with little time to live particularly with conditions like MND which not only is incurable but degenerative, causes further undue stress for them and their families in ensuring they get the benefits which they are entitled to.

Social media today has been full of messages in support of #GlobalMNDAwarenessDay and #United2EndMND in particular MP’s Brendan Clarke-Smith and Chris Evans, both vice-chairs of the APPG. Perhaps it is time the APPG on MND pressurised the DWP to stop its foot dragging. The evidence is clear: that for anyone living with a terminal illness people can and do live longer than six months but their condition won’t improve only get worse. Neither will the financial worry go away to pay for the additional heating and special dietary and other requirements that are so often part of living with such conditions.

The mark of a civilised society has often been recognised as how it treats its poor and vulnerable. In the case of those living with a terminal illness, we are sadly found wanting. People under diagnosis of early and possibly painful death need re-assurance that their final days will be as comfortable as we can make them. No more so than freedom from financial stress and worry.

It is time to #scrap6months once and for all.