Scrap 6 Months – letter to editors

21 June 2019

A year ago on Global MND Awareness Day 2018 we, as clinicians who work closely with people living with motor neurone disease (MND), called upon the Government to urgently reform the fast track benefits application process for terminally ill claimants, known as the Special Rules for Terminal Illness (SRTI) process.

Today, on Global MND Awareness Day 2019, little has changed. We continue to hear of people forced to navigate the standard application process for disability benefits such as Personal Independence Payment (PIP), Employment and Support Allowance (ESA) and Universal Credit (UC). This can take several months and involve a work-focused interview in a job centre.

For people living with a degenerative terminal condition such as MND, 50% of whom will die within two years of their diagnosis, this process is completely inappropriate. Yet according to DWP figures that’s exactly what around 55% of claimants with MND go through.

People dying of a terminal illness don’t have time to waste. They should be able to easily, quickly and sensitively access the welfare support to which they are entitled.

The primary reason for these alarming numbers lies in the Government’s definition of terminal illness which requires a ‘reasonable expectation’ that claimants will die within six months. This requirement is fundamentally flawed. Few terminal illnesses operate to a timeline – the only certainty is that the person affected will die. Whether that is within a week, a month or a year is irrelevant in terms of access to often desperately needed financial support.

In an independent poll by Medeconnect for the MND Association, 73% of neurologists supported replacing the six month requirement with one based on a clinical judgement. This has already happened in Scotland. There, doctors and specialist nurses can support SRTI applications for people living with MND and other terminal conditions without feeling restricted by an unworkable regulatory stipulation.

We see people at the hardest time of their lives. They’ve been diagnosed with a terminal illness which kills six people every single day. Their symptoms might include difficulty moving, eating, communicating and breathing – and those symptoms will only get worse. They will be unable to work, need increasing levels of care and are living with the knowledge their condition will only ever get worse. They really do not need the burden of financial concerns.

The MND Association and Marie Curie are just days away from closing their petition calling on the government to scrap the six month rule. They are close to reaching 17,070 signatures – the same number of people who have died while waiting for a decision on their PIP in the last six years. Like them, we would like to see an end to this shameful situation so that number never goes up.

Yours faithfully,

Professor Christopher McDermott, Professor of Translational Neurology, Honorary Consultant Neurologist

Dr Nik Sharma, Consultant Neurologist

Dr Suresh Chetri, Consultant Neurologist

Professor Carolyn Young, Consultant Neurologist, Honorary Professor of Neurology

Dr Thomas Jenkins, Senior Clinical Lecturer and Consultant Neurologist

Dr Rickie Patani, Consultant Neurologist

Dr Naveed Mustfa, Consultant Respiratory Physician

Dr Jonathan Frankel, Consultant Neurologist

Dr Cathy Ellis, Consultant Neurologist

Dr Janine Evans, Consultant Neurologist

Dr Caroline Barry, Consultant in Palliative Medicine

Dr Elizabeth L. Williams, Associate Specialist Palliative Medicine

Dr Saam Sedehizadeh, Consultant Neurologist

Dr Agam Jung, Consultant Neurologist

Dr Rhys Roberts, Consultant Neurologist

Dr Godwin Mamutse, Consultant Neurologist

Dr Kenneth Dawson, Consultant Neurologist

Professor Martin Turner, Professor of Clinical Neurology and Neuroscience, Consultant Neurologist

Dr Idris Baker, Consultant in Palliative Medicine

Dr Christopher Kane, Consultant in Palliative Medicine

Dr Richard W Orrell, Associate Professor and Consultant Neurologist

Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics

Dr Aleksandar Radunovic, Consultant Neurologist and Honorary Clinical Senior Lecturer

Jonathan Palmer, Consultant Nurse

Dr Mark Wardle, Consultant Neurologist

Dr Andria FA Merrison, Consultant Neurologist

Dr John Ealing, Consultant Neurologist

Dr Hardev Pall, Consultant Neurologist

Professor Nigel Leigh, Professor of Neurology, Brighton and Sussex Medical School

Dr Pietro Fratta, Clinician Scientist and Honorary Consultant Neurologist

Dr Stuart Weatherby, Consultant Neurologist


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