“Hey you, I’m in here, this is me, Inside this broken body, can’t you see? I have a perfectly functioning brain, And my mental faculties, remain; It’s just that my extremities have failed My moving parts, they are derailed” – Pollyanna.
MND is a rare disease and many health care professionals will never care for someone with MND during their career, or will see very few cases. Once the disease has been diagnosed then a variety of health professionals are involved, some of these may be part of a MND Care Centre, if available, or a neurological centre. By working together these professionals’ main focus is to ensure the best possible quality of life through symptom control and ensuring timely access to services and support.
Below are some examples of the different environments where health care professionals and family members and friends come into contact with MND.
Accident and emergency
As the condition progresses there could be instances where the person with MND has to go to Accident and Emergency. This may be as a planned or unplanned admission, for example as as a result of a fall or breathing problems. If you work in A&E you may never have seen someone with MND before and this in itself can be challenging. More information can be found here.
“They didn’t know… they gave him oxygen – they didn’t know… I was shocked. My brain said to myself – they don’t know what they’re doing” – wife of man living with MND
The MND Association has a resource developed for the use of acute, urgent and emergency staff.
Most patient’s first touchpoint is with their GP and as we have already seen even getting to a diagnosis may be long and protracted.
“Shouldn’t every GP know about it? Or have something they can tap into – I’ve got someone with Motor Neurone Disease, what do I do now? Where can I point them? How can I help them?” – Maria, person living with MND
MND can not only affect the patient, but can have a huge impact on those close to them from day one. Their daily life can see significant changes.
“You’re terribly, terribly busy… it’s just such hard work. There’s so much to do all the time, always on the go. And what you’re not doing physically you have to sort out mentally” – wife of MND sufferer
As a school nurse you may come into contact with children who have a parent who has developed MND. It can feel natural to try and protect children from any distress, but it’s also important to explain the situation so they don’t worry or even blame themselves. The school should be informed if someone in the family has MND, as if they have this knowledge and recognise the impact this will have on the family, then the school can be an effective source of support for the child.
Some secondary conditions, like respiratory problems, related to MND mean that patients may need to be admitted to hospital for a period of time. It is highly likely they will be placed on a ward where the staff may not understand the condition.
“They do need to understand what people with MND can and can’t do. That there’s weakness… they person living with MND may be very courageous and try to do things too much. They need to understand better” – wife of man living with MND
The MND Association has materials to help support children and young people.
Most MND patients want to be cared for and eventually wish to die at home. This requires integrated care from health and social services and, in some cases if available, specialist care systems such as hospices.
“We had to learn very quickly what to do… it’s not just all the nursing stuff or the support stuff, but there’s also the business about how you’re going to get the equipment into your home – if you can” – wife of man living with MND