Motor Neurone Disease (MND)

We asked people what their messages would be for health and social care professionals based on their experience of living with MND. Many such messages appear throughout the sections on this website, especially those on 'Information needs', 'Path to diagnosis', 'Speech and communication', 'Aids, equipment and adaptations' and 'Coordination of care'. Here we summarise some additional key points that people wanted to get across. 

Given the rarity of MND, people appreciated that many professionals they met would not have much experience of the condition and might find it difficult to advise them. However, some said they felt unsupported emotionally when health professionals had limited knowledge of their condition. One person said she thought GPs were 'frightened of their lack of knowledge about motor neurone disease.' Several preferred it if staff were open about this at the outset. One man was pleased his GP said he'd never treated anyone with MND before, and told him to let him know if he heard or read anything he thought the GP ought to know. Several people appreciated it when staff worked together with patients and their families to learn more.

Several people found it hard when they were admitted to hospital and encountered staff who did not understand the condition very well and did not listen. People were also upset by inappropriate advice from some individual community staff such as occupational therapists, physiotherapists or dietitians who were not specialists. As one carer (Interview 41 - Roger and Teresa's story) said,

'There have been occasions where the professional might have been a little strident in dealing with people... when I've tried to intervene, taking the attitude, “I know what I'm doing”. And once or twice I've had to be less than gentle in the way I said, “I'm sorry, you do not know what you're doing. Please listen to me”.'

This was especially the case when the person had speech difficulties and staff were not familiar with how to communicate. (See also 'Speech and communication with MND'). Several made comments such as'

“You are 'compos mentis', you do understand and you are normal. All that's wrong is your voice.”

“People who can't move or communicate, you must assume that they are aware, even if they don't appear to be. You must assume that they can feel, even if you think they can't. And you must treat them as if they were your own new-born child, with as much care…It could be your daughter, your son, your wife, your husband.” 

“Don't automatically think that because you can't speak properly that you must be senile.”

One woman's father had some bad experiences on a general neurological ward, including one nurse who seemed to be deliberately cruel. However, she singled out a particularly good example of care from an auxiliary nurse who was given extra time to be with him. As, she pointed out, a key problem in caring for people with speech difficulties is that they need more time to communicate than staff can afford.

Another man was upset during a hospital stay for his diabetes that staff did not seem to understand MND well, and were inconsiderate.

However, a few people were concerned that negative stories about care are much more likely to be told and remembered than positive stories, which means people may be frightened unnecessarily. 

When it came to staff who specialised in MND, many people were impressed with the quality and kindness of the care received. Inevitably there were also criticisms of the manner of some individuals, but most people recognised the difficulties of meeting every individual's preferences. The difficulty of getting the right balance for each person between being honest and realistic, but also being positive and reassuring, is explored especially in the sections on 'Immediate reactions to diagnosis' and 'Information needs'). One woman said, 'Be honest but tender', and a man suggested, 'Accept that people can be proud, and just be gentle with us.' Another woman said, 'Put yourselves in our shoes. Sometimes they deal with so many people and I feel we're just a name to them, because it was a devastating diagnosis for us.'

Most people were well aware that there is no immediate prospect of a cure, and that there was a limit to what professionals could do to help. They also understood that it was impossible to predict how their symptoms would progress and what their life expectancy would be. Several people suggested staff could share more openly with patients their uncertainty about how the condition would progress. Some said they could use the fact that progression is so varied and unpredictable as a positive way to offer hope. A few said they did not want to hear anything negative at all, including one man who said, “I do not wish to hear anything of the future. I don't want anything negative. I only want positive. If they have nothing else to say, better not say anything.” Others thought it was more a question of balancing the positive and the negative.

On the other hand, one man (see Interview 18 - Jim's story) felt staff sometimes tried to hold out hope when really there was none. He could see it was upsetting for them as well as the patient.

'I just felt that the doctor and the nurse, they were obviously upset as well and they obviously feel impotent because they can't do anything, really. Sometimes I sort of feel that they shield you a bit. They'll say things like, “Well, maybe it won't go up to your neck and your neck won't get weak.” And things like that, and I'm sort of thinking, “Of course it will”.'

Given the variable nature of the condition, another common thought was that people needed to be assessed and treated very much as individuals. 

A number of people felt that problems were often down to administrative mistakes or problems with the system rather than the fault of individual staff.

The NICE guideline on motor neurone disease (NG42), from the National Institute of Health and Care Excellence, provides recommendations to health and social care professionals about how to provide appropriate care. These guidelines can help people with and affected by MND access suitable care. Resources to help people use the guideline, and make complaints about inadequate treatment and care, are available on the MND Association website, including an introductory video and a pocket booklet on what to expect from care with MND.

The MND Association website also provides information for professionals about MND. This includes a range of educational opportunities to health and social care professionals to enable them to develop their skills and expertise so they can make a difference to people affected by MND and improve their quality of life.

Last reviewed August 2017.
Last updated August 2017.