Stephen Hawking has made a heartfelt plea to stop fellow motor neurone sufferers dying without a voice. The world’s most famous scientist said losing the capacity to communicate is one of the most frightening challenges faced by people with motor neurone disease. Yet campaigners fear many funding gaps throughout Britain mean many sufferers fail to get the help they deserve. Some have been waiting months, when they rely on loved ones to interpret their needs, but others die first. Physicist Hawking, whose inspiring story is the subject of the Oscar-winning biopic The Theory of Everything starring Eddie Redmayne, lost the ability to speak in 1985. Stephen Hawking said not being able to communicate is 'one of the most frightening and isolating aspects of living with motor neurone disease'. He has made a plea to ensure other sufferers do not die without a voice . He now talks through a speech synthesiser with a distinctive electronic voice recognised globally. He said ‘I am a Patron of the Motor Neurone Disease Association. ‘Their campaign "Don’t Let Me Die Without A Voice" highlights how not being able to communicate is one of the most frightening and isolating aspects of living with motor neurone disease (MND). ‘Everyone with MND should be able to access speech and language therapy and the range of communication equipment technology which is out there. No one should die without a voice.’ Figures show at least two out of five MND patients wait more than six weeks to get the communication equipment they need, which can range from simple alphabet charts and speech therapy to high-tech support such as text-to-speech devices, eye gaze systems and voice-banking. Between 80-95 per cent of people living with MND experience some loss of speech before they die. The weakening of muscles in lip and tongue, vocal chords and chest contribute to deterioration in the ability to speak and swallow. Up to 5,000 people are living with MND at any time but 30 per cent die within a year of diagnosis, and over 50 per cent within two years. The scientist, whose inspiring story is the subject of the Oscar-winning biopic The Theory of Everything for which Eddie Redmayne won an Oscar, lost the ability to speak in 1985 . The rapidly progressive nature of the disease can result in patients dying even while waiting for the initial assessment of their needs. Currently the NHS funds communication aids for fewer than half the people with MND who need them, according to an investigation by MPs from the All Party Parliamentary Group on MND. As part of the 2012 NHS reforms, the Coalition Government identified that NHS England had a duty to provide communications support and equipment for people living with MND. However, the change to specialised commissioning in 2013 which should result in high- quality services across the country has resulted in catastrophic failure for people with MND, said Karen Pearce from the MND Association. She said: ‘People with motor neurone disease are having grave problems accessing the funding that is meant to be available for communication support in England. ‘Despite pockets of excellence, people with MND and health professionals tell us that speech and language therapy support services are also poor in too many areas, for example, in Surrey, Sussex, Birmingham, Worcestershire and West Yorkshire.’ ‘We know that in some cases people have waited months to access communications support and died without a voice’ added Chris James, of the MND Association. Building manager Liam Dwyer, 51, who was diagnosed with MND in 2005, has been waiting since last July for a speech and language therapy assessment. The father of a 21-year-old son, he lives in Surrey with wife Anna, who enables him to tell the world of his plight. He said: ‘It is hard enough being trapped in a failing body but not being able to communicate is one of the most frightening and isolating aspects of this disease. ‘Everyone with MND should be able to access speech and language therapy and the range of communication equipment technology which is out there. No one should die without a voice.’ A delegation of experts is to meet Liberal Democrat health minister Norman Lamb tomorrow asking him to take action over delays for people with MND in accessing communications support and equipment.
Physicist Hawking, who sufferers the disease, lost ability to speak in 1985 . Said it was 'one of the most frightening and isolating' aspects of illness . Campaigners fear many patients die before getting the help they need . Many wait months for communication equipment, relying on family to interpret their needs, but others die first . Vital equipment includes alphabet charts, speech therapy as well as high-tech speech devices, eye gaze systems and voice-banking . 5,000 people are living with the disease - 30% die within year of diagnosis .