A Dromintee woman who has been working tirelessly to raise awareness of Motor Neurone Disease, since the death of her much loved father to the incurable condition, is calling on Newry Mourne and Down District Council to sign up to the MND Charter which aims to achieve quality of life, dignity and respect for people with MND and their carers.
Speaking to The Examiner after attending last week’s regional conference of the MNDA (Motor Neurone Disease Association) in Antrim, local photographer, Edel Fearon, said support from local councils is vital in helping to positively influence the lives of people living with MND.
“The importance of the MND charter in ensuring that the needs of people with MND are recognised and addressed by wider society was underlined at the MNDA conference – the first regional conference to be held in Northern Ireland,” said Edel.
MNDA has called on everyone to lobby councils who have not already signed up to the Charter to do so immediately in order to secure the needs and rights of those living with the cruel disease. Newry Mourne and Down District Council is one of six councils in the north who have yet to sign the charter.
Edel and her family know first hand just how devastating the effects of the condition are, having cared for their father Frank, as he succumbed to the progressive, debilitating illness five years ago.
“Getting our local councils to adopt the charter is a powerful way of supporting people with MND in communities,” said Edel, who revealed that Slieve Gullion councillor Mickey Larkin has scheduled a motion asking council to sign the MND Charter for next month’s Council meeting.
“If you know any councillors please bring this Charter up with them and ask them to support this most important motion to make a positive difference to the lives of people with MND, their families and their carers in our communities,” she added.
This charter asks that people with MND have the right to an early diagnosis and information; have the right to high quality care and treatment; have the right to be treated as individuals and with dignity and respect; have the right to maximise their quality of life; have the right to be valued, respected, listened to and well supported.
The motion submitted to NMDDC by Sinn Féin Councillor, Mickey Larkin calls on the council to adopt the five point charter which “recognises the rights and priorities of people living with MND and of those who care for them. It promotes a standard for good care, is designed to raise awareness and increase understanding of this devastating disease.”
“MND is an horrendous debilitating disease for which there is no cure. Over a period of five years this community witnessed several of our neighbours and friends suffer terribly with this condition,” Mr Larkin told The Examiner.
“We saw first hand the love and care provided by family and carers during a harrowing time. The MND charter is a chance for all of us to increase awareness, promote understanding and lobby other government agencies we interact with to provide the services and support needed by these families.”