Motor Neurone Disease (MND)

Information needs

Information needs that people told us about included:

  • before diagnosis, about the tests they were having and what conditions they were being tested for
  • after diagnosis, the types and symptoms of MND
  • information about research into causes and new treatments
  • advice on what aids and equipment were available and how to obtain them
  • benefits and other financial information
  • information about interventions to help with eating and breathing
  • the range of care services available and how to access them
  • information about what to expect as the condition progresses.

However, people's views differed widely about how much information they wanted and when. Many wanted to be well informed, especially as MND is rare - few people knew much about it before diagnosis. At the same time, many felt that the information given could feel overwhelming and negative, especially at diagnosis. While they recognised that health professionals have a duty to be clear and honest with their patients, some thought the pendulum had swung too far towards giving information whether they wanted it or not. Some were pleased not to have been given the full picture straight away, and some still did not want to have detailed information. The MND Association's information stages the information to allow people to absorb it in their own time and at their own pace. Introductory booklets and information sheets provide bite size pieces, while their guides offer more comprehensive content, such as their main publication, Living with motor neurone disease. Even this can be accessed as separate sections on the website if people wish to tackle them one at a time. They have also introduced other formats, such as easy read or in other languages, to help people access information in the way that suits them best. You can download their resources on their website.

People with a family history of the condition were of course in a rather different situation. As one woman said, “It's like living with a time bomb. And I can't electively choose not to know. I can't dip in… because I already know too much.” However, MND has a variable course and it is impossible to predict how each person's condition will progress, whether there is a family history or not. Each person's journey is unique, as is each person's attitude to finding out information. It can be hard to get the balance between giving people enough information to prepare for all eventualities, while at the same time reassuring them it may not happen to them. In addition, sometimes health and social care professionals themselves may have limited knowledge and experience of MND, making it difficult for them to pitch information at the right level. The MND Association runs a series of educational events and study days to support health and social care staff in learning more about MND.

Several people referred to how MND is represented in the news and media, particularly in terms of progression and life expectancy. Professor Stephen Hawking was often seen as a positive example of a long and productive life, but it was also pointed out that his circumstances were very unusual and might be misleading. By contrast some people remembered the case of Diane Pretty (who fought a legal case over whether her husband could help her end her life), and felt the emphasis on distressing symptoms and loss of dignity in news reports of the time could be equally misleading. People felt there was little between these two extremes to give a more balanced picture, despite the efforts of the MND Association to raise more informed awareness.

Several people with a diagnosis of PMA (progressive muscular atrophy) or PLS (progressive lateral sclerosis) would have liked more information about their specific form of the condition. Some were diagnosed some time ago, and said not much had been available at the time, though the MND Association provides dedicated information. (See footnote on less common types of MND diagnosis).

The most common sources of information were the MND Association's printed and online information, other internet sites and forums, specialist clinic staff, local MND Association regional care development advisers and/or Association volunteers, and other people living with the condition. The MND Association recommends that people should be told how to get in touch with the MND Association at diagnosis. This information should be offered again later on, as people may not wish to get in touch straight away.

People valued both the internet and personal experience, but all health information on the internet varies in quality. Some people cautioned against the amount of misleading material from unreliable sites. 

Several people preferred to rely on the expertise of their specialist neurological staff or the MND Association. Most people felt the MND Association provided excellent information, but a few people read more detail than they were ready for and one person described it as 'pretty scary reading'. As noted earlier, the MND Association tries to present information in stages to respond to individual needs, but people themselves may not be sure quite how much they want to read. One woman explained, 

'I got loads and loads of information, big books of what it was all about, that in the end I just couldn't read it. So having been very inquisitive at the beginning, then there was too much information, because everybody's very different. And you read about how it can affect you and you think, “Oh, gosh, I don't want that”.' 

The MND Association recommends reading information that feels relevant at the time. As MND is a complex disease, there are many areas that need to be covered, but you don’t need to read everything all at once. You can return to different subjects as symptoms begin to appear or progress. This can be very unpredictable, so each individual can select information according to their particular needs.

Several people found it difficult to get detailed information about suppliers of particular types of equipment and complained that suppliers would often take a long time to get round to explaining their prices. As one man commented, “They never tell you what the price is. Every time we've rung up for a quote for something, the first question they ask me is, 'Do you have a grant?' 'No, I'm paying for it myself.' And the price immediately rockets.” (See Interview 28 - Phil's story). One person suggested a special area on the MND Association website for people to exchange information directly with each other. This can now be accomplished through posts and conversations on their online forum.

As a matter of policy, the MND Association does not endorse services or products from specific companies. However, it does invite people to share practical tips and problem-solving ideas, and seeks to incorporate these into its written and online information. Practical information-sharing is also a benefit of getting in touch with other people with MND (see 'Support groups and meeting others'). 

The MND Association advises people thinking about specific pieces of equipment to discuss it with a member of their professional care team first, as it can be important to get a professional assessment done. (This might be their occupational therapist for example). The assessment can help identify the most suitable piece of equipment and the care team should be able to advise if it is available from statutory services. Some people may choose to go direct to a private supplier, though it is important to bear in mind that very few private suppliers will have enough experience and understanding of MND to help them advise customers appropriately.

Further advice and support is available on the MND Association's website.
Their website pages and information resources are regularly revised, and continue to expand in order to meet the wide ranging needs of people with and affected by MND. If you have just been diagnosed, a good place to begin your search for information is their page ‘Where can I find the information I need?’ Their information resources for children and young people can also help families communicate about MND, to help younger family members cope with the changes happening around them.  

Health and social care information from the MND Association is developed and updated according to the criteria of The Information Standard. This accreditation is governed by NHS England and means their information is considered trustworthy. Content is evidence based, user tested and reviewed by qualified experts. Revision and new work is steered by feedback and requests from people living with or affected by MND. This means their publications also feature personal experience and guidance on ‘things I wish I had known at the start’.

Information is a theme running through many of the other sections on this site, especially 'Path to diagnosis of MND', 'Immediate reactions to diagnosis of MND', 'Possible causes of MND', 'Finances and benefits' and 'Aids, equipment and adaptations'. People's attitudes to information are closely linked to their general attitude to living with MND, which is explored more in 'Philosophy, attitude to life and messages for others'

Footnote: less common types of MND diagnosis

A few people diagnosed with MND will be told they have a less common form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, but they share many of the same problems of increasing disability. For further information about the symptoms and progression of these forms, see the MND Association's website.

The MND Association provides a range of information sheets, including content about symptom management and 2C: Primary Lateral Sclerosis and 2D: Progressive Muscular Atrophy.

Last reviewed August 2017.
Last updated August 2017.


 

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email