MND is an incurable condition and affects about 4,000 people in England and Wales at any one time. Most people die within three years of developing symptoms. These centre on muscle weakness caused by degeneration of motor neurones in the brain and spine. About half of MND sufferers also show signs of dementia or cognitive change, making decision-making and planning ahead difficult.
The new NICE quality standard covers several areas, aimed at improving quality of life, functional ability, symptom management, satisfaction with care and survival from onset of symptoms.
Simon Chapman, Director of Policy and External Affairs for the NCPC, commented: “We welcome this quality standard from NICE. It puts the patient’s wishes at the centre of their care, offering realistic choices at diagnosis and at key points after. With about half of people living with MND also showing signs of cognitive impairment, it is important for people to be able to assess and make their choices for future care right at the start.
“Ensuring that people’s personal choices are understood and met is central to the Government’s new National Commitment on end of life care, unveiled earlier this month. We hope this Quality Standard will improve care for people living with MND and that it will demonstrate how personal choice in end of life care works in practice. It is good to see that people with MND will be offered conversations about their wishes and preferences; it is essential that those lead to well-documented plans that are shared between services working in coordinated and collaborative ways together to make sure they are acted on”.