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.
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