People with MND are “dying without a voice”

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​Lack of adequate funding means people with MND can't access communication equipment 

16th June 2015 by Robert Armour 0 Comments

Scotland’s Charity of the Year is demanding that no-one with motor neurone disease (MND) dies without a voice while they wait for NHS services.

MND Scotland, which picked up the prestigious gong earlier this month, says many people with the disease are being made to buy their own communications equipment because there is no statutory obligation on the NHS in Scotland to provide it.

People with MND - a terminal neurological illness which prevents signals being sent from the brain to the muscles - rely on a range of sophisticated communications equipment, ranging from computers and iPads to phones and text-to-speech synthesizers.

There is no good reason not to ensure people have the equipment they need - Craig Stockton

In England, distributing this equipment is the responsibility of the NHS but there is no similar statutory duty in Scotland.

The Scottish Government’s 2012 report A Right to Speak outlined a set of recommendations with £2.5 million allocated across Scotland over a three year period to assist statutory services to fund the supply of specialist communications equipment. 

But this funding came to an end this year.

Marking MND Awareness Week, the charity is calling on the Scottish Government to introduce a statutory duty and make supplying communications equipment the clear responsibility of the NHS in Scotland to ensure that no-one with MND “dies without a voice while they wait for NHS services.”

MND Scotland chief executive Craig Stockton said: “A Right to Speak highlights the financial cost of not supplying equipment to those who need it. With dramatically decreasing costs of this type of equipment year on year, savings are even greater than reported. 

“There is therefore no good reason not to ensure people have the equipment they need.”

Over 430 people each year are diagnosed with MND in Scotland.