Social Security: Let’s get benefits right for people with MND

Written by: Kirsty MacAlpine, Policy Officer, MND Scotland

Published: 24/10/2016

How can automatic social security entitlements and lifetime awards ensure that people with MND are treated with dignity and respect?

It is clear that the charity sector has rallied around the consultation on Social Security in Scotland, and used it as an opportunity to really consider, in depth, the challenges in the current system and the opportunities a new one offers.

I’ve attended a number of powerful events, including one hosted by the ALLIANCE, which have helped to reiterate, and in some instances shape, my own thoughts on how we can get a better social security system that works for all.

Throughout these events, the Scottish Government has been clear that they want to embed the values of dignity, fairness and respect in to the new system from the outset.

One of the ways that this should be done is by challenging the current culture around the welfare state – we should not allow the discourse around the system to be about shirkers and scroungers. Instead we need to challenge these views wherever they occur, and we need to design a system where the first entry in to it is about how we can help you manage.  Not, as is too often the case just now, prove that you need or are worth this support.

After all, a benefit is not a perk of being ill, rather it is a necessary payment that people are entitled to in order to assist with the additional costs that occur when living with an illness such as MND.

MND is a rapidly progressing, terminal illness which can affect the ability to walk, talk, eat, sleep, or breathe unaided. Average life expectancy from diagnosis is just 14 months. There is no cure or effective treatment.

One person with MND has said that;

Going through the protracted support/benefits system is unbelievably stressful just after you have been given such a devastating prognosis. Suddenly every moment becomes precious and time spent on bureaucracy is resented.

It is MND Scotland’s opinion that one of the ways to treat people with dignity is to break away from the issues with the current system which seems designed to thwart applicants at every turn.

There are some people who will apply for benefits who will need to be assessed. The Scottish Government absolutely need to ensure that the assessment process is fairer, less stressful, and able to effectively deal with fluctuating conditions.

However, people with MND do not fall in to that category. The illness is progressive, terminal, and there are no periods of remission.

When people with MND are supported by MND Scotland’s Welfare and Benefits Officers through the application process for benefits, they are always successful.

Confirmation of a diagnosis of MND should be all the evidence that a new agency needs to provide benefits such as Personal Independence Payment (PIP) or Attendance Allowance to people with MND for the rest of their life, without assessment or reassessment.   We undertook a survey of people affected by MND in Scotland and over 90 per cent of respondents agree with this view and crucially, 85 per cent said they were happy for the new agency to have access, with appropriate consent, to their medical records to facilitate this.

MND Scotland believes that including automatic entitlements in to the newly designed system, and giving lifetime awards, is the best thing the Scottish Government could do with these new powers, to make the lives of people affected by MND better, and to ensure that the new system treats people with MND in a more dignified way than they are under the current system.

You can read MND Scotland’s consultation response here and a summary here.

To contact your MSP to ask them to support MND Scotland’s Let’s Get Benefits Right Campaign, visit MND Scotland’s website.

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