Mr Robin Swann MLA, the Ulster Unionist Party’s Westminster candidate for North Antrim, has urged Stormont health minister Jim Wells “to earmark specific funding in his budget to help the plight of people living with Motor Neurone Disease (MND) and assist people of MND sufferers”.
Assemblyman Swann, who is UUP Chief Whip and Chairman of the Stormont Employment and Learning Committee, issued his appeal as he signed the Motor Neurone Disease (MND) Association’s Charter in recognition of the rights and priorities of people living with MND and their carers.
Mr Swann urged “the entire community to rally behind this very worthy health cause and sign up to the MND Charter”.
MND kills five people every day, with half of people dying within 14 months of diagnosis. This terminal disease can affect any adult at any age. There is no known cure. Unfortunately, this condition is still little understood and this contributes to many people with MND not receiving the care and support they need. The MND Charter has been launched with the aim to change this. The five-point charter sets out what good care looks like for people with MND and their carers and is designed to raise awareness and understanding of this devastating disease.
Mr Swann said he was “delighted to sign up to the MND Charter”, and acknowledged the difference good services make to the lives of those suffering from MND in assisting to maximise their quality of life and die with dignity.
Mr Swann added: “The Charter outlines five points which highlights the rights which those with MND and their carers should have. “Those diagnosed with MND should have the right to an early diagnosis and information, access to quality care and treatments, be treated with respect and dignity as individuals and able to maximise their quality of life. Their carers should have the right to be valued, respected, listened to and well supported,” said Assemblyman Swann.
Mr Liam Dwyer, a person living with MND and fronting the campaign said: “Many people with MND die without having the right care, not having a suitable wheelchair, not having the support to communicate.
“When living with MND, one month waiting for an assessment or a piece of equipment is like a year in most people’s lives, especially as half of the people with MND die within 14 months of diagnosis.”
The MND Charter, which has already received endorsements from leading medical institutions aims to ensure people with MND and their carers have access to timely and appropriate information, care and services that allow them to maximise their quality of life and ensure they are treated with dignity.
Mr Chris James, Director of External Affairs, said: “What matters most is that people with MND and their carers can access the right care, in the right place and at the right time. “We need to ensure that the needs of people with MND and the priorities for good care as set out in our charter are recognised and respected. We urge everyone to sign the charter to show their support.”