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7th Jul, 2022

LETTERS: Your discussion from around the borough in this week's Observer

Imagine living with a terminal illness, one which means that each day your condition gets that little bit worse and you are able to do less than you could the day before.

Now imagine being told that you’re not dying quickly enough to easily access benefits to pay for the support you desperately need. Or, that if you’re applying for Universal Credit, you’ll need to go to a Job Centre and discuss your work aspirations.

This is the reality for people that the Birmingham & Solihull Group of the Motor Neurone Disease (MND) Association is supporting. But we’re fighting back. And through the pages of your newspaper we’re asking local people and MPs to join the fight.

The MND Association has been campaigning to persuade the government to change the law so everyone living with MND can access benefits using the Special Rules for Terminal Illness (SRTI) fast-track process. At the moment this means asking a GP, consultant or specialist nurse to sign a form saying their patient has a ‘reasonable expectation of death within six months’.

MND is a complex condition and it’s almost impossible to give such a precise prognosis. In a recent survey by the MND Association less than 2 per cent of GPs in the West Midlands said a ‘patient’s condition always makes it clear whether they should sign the form’. Nationally only eight per cent of specialist neurologists say it is ‘always clear’.

That suggests more than nine in 10 experts don’t feel confident putting a time scale on a patient’s prognosis so potentially limiting their access to the fast track process for benefits.

Currently only 40% of disability benefit claims by people with MND are made through the SRTI process even though Motor Neurone Disease is always terminal and there is no cure. Six in 10 people are left to apply through the standard process which can mean filling in long forms, enduring face to face assessments, experiencing an unacceptable delay in waiting for the benefits decision, often having to make tribunal appeal prior to receiving benefits.

This is imposed on them even at the time when they are coming to terms with their terminal diagnosis and should instead be able to enjoy the later months with their families.

As a group we are asking local Dame Caroline Spelman MP and Julian Knight MP to back Madeleine Moon’s private members bill when it goes to a second reading in Parliament on November 23rd. If successful, the bill will abolish the ‘six month’ rule.

Local people can join us by visiting the MND Association Website at https://www.mndassociation.org/get-involved/campaigning-influencing/

John McGorman

Volunteer member of Birmingham & Solihull MND Association Group

JLR closed for production for two weeks. Cabinet Minister and the police driving around in BMWs. Is there any relationship? It’s not the number of cars involved but the image!

Can you imagine the French or Germans driving anything other than cars made in their own country?

Product placement par excellence!

John Salisbury

Solihull

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