Information for people with or affected by MND

Our smaller introductory resources can help if you or someone you are close to has been recently diagnosed with MND.

How to find out more
A leaflet providing very basic facts about MND and how to find out more from the MND Association.

Information flyer
An A5 flyer mentioning the range of information we provide for people living with and affected by MND, or Kennedy’s disease.

1C - Where can I find the information I need?
Our information sheet that can guide you to appropriate information to help you access suitable support.

What is MND?
Our short animation about the disease, featured on a web page with other basic facts.

An introduction to motor neurone disease (MND)
A small booklet providing a short overview of MND. An audio version of this guide is also available.

An easy read guide to motor neurone disease (MND)
A guide to help you if you have reading difficulties or learning disabilities and have been diagnosed with MND. This resource has been endorsed by Mencap.

What you should expect from your care
Our pocket sized booklet to support discussions with health and social care professionals. This may help lead to better outcomes for treatment and care with MND and contains the main points from the NICE guideline on motor neurone disease.

Caring and MND: quick guide
A small booklet to help those new to the caring role when someone close has been first diagnosed with MND. An audio version of this guide is also available.

Kennedy's disease
Our booklet about Kennedy's disease and available support.

What is Kennedy's disease?
Our short animation about the disease, featured on a web page with other basic facts.

Our range of award-winning guides, providing comprehensive information about MND and how to manage its impact. See Introductory information above for smaller booklets.

Living with motor neurone disease
Our main guide to help you manage daily life with MND. The content includes write-on pages to help you keep track of important records. You can download this guide in full or by section.

Kennedy's disease
An overview of Kennedy’s disease also known as spinal bulbar muscular atrophy (SBMA), which is a separate, but similar condition to MND and is supported by the MND Association.

Living alone with motor neurone disease or Kennedy's disease
This guide explores the likely challenges when living alone with either condition and offers information resources that can help.

Inherited MND and genetic counselling
An overview to help people with MND, or who have a family history of the condition, to find guidance about genetic counselling and genetic testing. 

Caring and MND: support for you
Our guide if you provide support for a partner, relative or friend living with MND. We have included write-on pages to help you keep important records. You can download this guide in full or by section.

Types of care
An overview of the range of care available to help you if you have MND or Kennedy's disease, from primary care through to specialist as well as MND Care centres and networks.

Personal care with MND
Suggestions on ways to manage everyday personal care tasks such as washing, dressing and intimate care with MND. This booklet contains information about equipment and services that could support you to prolong independence with everyday tasks and how to access them. 

Sex and relationships
Guidance on intimacy for anyone affected by MND. The booklet explores ways to maintain physical connection with disability, this inclusive content offers support whether in a relationship or not, and regardless of sexuality.

Telling people about MND
How to open conversations about your diagnosis with family, children, friends, colleagues and health or social care professionals. This guide includes information on difficult conversations, planning ahead and using advocates to help you raise awareness of your needs.

Eating and drinking with motor neurone disease (MND)
Our guide to help people with MND adapt how they eat and drink, if needed. It includes information, tips and easy-swallow recipes. See our Eating and drinking page for a short video about the guide and cookery techniques in action. You can also download a web app of the guide, with all the recipes and a summary of the information.

Making the most of life with MND
Our booklet on quality of life with MND or Kennedy's disease. It focuses on how adapting your approach may help you continue doing the things you want to do. It also includes feature pages, where others living with MND share their ideas and experiences on how they have continued to do things they enjoy.

Getting around with MND
Driving, transport and holiday guidance focusing on different ways to get out and about with reduced mobility. The booklet also includes information about public transport, wheelchair accessible vehicles and mobility schemes that could help support you.

Emotional and psychological support
Identifying difficult emotions that may happen for people with a diagnosis of MND and their carers. This guide includes how to seek support and the different therapies available.

Changes to thinking and behaviour with MND
Some people with MND experience changes to the way they think and behave. This guide includes information for people with MND, their carers and families.

An easy read guide to motor neurone disease (MND)
A guide to help you if you have reading difficulties or learning disabilities and have been diagnosed with MND. This resource has been endorsed by Mencap.

End of life: a guide for people with motor neurone disease
Our comprehensive and candid guide to help people with end of life decisions and opening difficult conversations with family and professionals. You can download this guide in full or by section.

Finding your way with bereavement
Our booklet on finding emotional support when bereaved. Includes a practical overview of what to do when someone dies, and supporting children and young people who may also be grieving.

Our information sheets provide a range of guidance on specific aspects of MND. We have grouped these sheets under the following headings to help you find the right type of information to meet your needs.

Some of our sheets have been converted into small booklets to bring similar subjects together. Explore the option above for guides and booklets.

Overviews

1A - About the NICE guideline on MND
Information about the NICE guideline, which gives recommendations about treatment, care and support for people with MND.

1B - Health information in other languages or formats
How to access translated information or assistance from a translator at health and social care appointments. Download this sheet in a range of other languages.

1C - Where can I find the information I need?
Our information sheet that can guide you to appropriate information to help you access suitable support.

1D - How we use your information
An explanation of why we ask for information and how it is used. This sheet also explains how we protect confidentiality and your rights.

Disease types

2B - Kennedy's disease
This sheet is no longer available. The information can now be found in our Kennedy's disease booklet.

2C - Primary lateral sclerosis
Information about this slow progressing form of MND. Contact our MND Connect helpline for details about an email group for people with PMA or PLS (the MND Association is not responsible for the group or moderation of its content).

2D - Progressive muscular atrophy
Information about this rare form of MND. Contact our MND Connect helpline for details about an email group for people with PMA or PLS (the MND Association is not responsible for the group or moderation of its content).

Types of care

3A - MND care centres and networks
This sheet is no longer available. The information can be found within our Types of Care booklet.

3D - Hospice and palliative care
An outline of hospice and palliative care, with details of how this type of care can support you and help improve quality of life. This sheet also includes information on planning ahead, read when you feel ready to do so.

Medication

5A - Riluzole
Guidance on riluzole, which is the only drug licensed in the UK to help treat MND.

Physical therapies

6A - Physiotherapy
Guidance on how physiotherapy can help if you have been diagnosed with MND and how to access this support.

6B - Complementary therapies
Information about complementary therapies and the options available.

6C - Managing pain
How to find support if you experience pain, particularly if due to problems with movement or mobility.

Bulbar (mouth and throat) symptoms

7A - Swallowing difficulties
Information to help manage concerns about swallowing difficulties, saliva, coughing and choking with MND. Download this sheet in a range of other languages.

7B - Tube feeding
Information to help with decision making about tube feeding, if you have swallowing, eating or drinking difficulties. Download this sheet in a range of other languages. See other decision making tools on our page for Swallowing, eating and drinking.

7C - Speech and communication support
Information about alternative ways to communicate and how to access further support if your speech is affected by MND.

7D - Voice banking
Information about voice banking, the process of recording yourself speaking to create a computerised version of your voice for use on a communication aid.

Breathing and ventilation

8A - Support for breathing problems
An explanation of how MND may affect breathing and the types of therapy and treatment available to manage symptoms. Download this sheet in a range of other languages.

8B - Ventilation for motor neurone disease
Information on the types of ventilation available to help support breathing. Download this sheet in a range of other languages.

8C - Withdrawal of ventilation with MND
Guidance on how ventilation can be withdrawn, if wished, and questions to raise with the professionals who support.

8D - Air travel and ventilation for motor neurone disease
Guidance on what to consider if you are planning to use air travel and wish to take NIV equipment on the journey.

Benefits, financial support and social care

10A - Benefits and entitlements
Information on relevant benefits and entitlements, whether you may qualify and how to apply.

10B - What is social care?
Guidance on social care and how it works, including how to get your needs assessed for care support, who pays for any care services agreed and how to use direct payments if you want to control the care services you receive.

10C - Disabled Facilities Grants and home accessibility
Guidance on how and when to apply for a Disabled Facilities Grant (DFG) and other benefits regarding housing.

10D - NHS continuing healthcare
Details about NHS continuing healthcare and how to apply.

10E - Work and motor neurone disease
Information about available options if you are living with MND and considering whether to continue or leave employment.

10F - Personal health budgets
Information on personal health budgets for people living with MND or Kennedy's disease in England.

10G - Support for families with children
Information on the different types of support that may be available for families affected by MND.

Daily living

See also our booklet on Personal care with MND and our booklet Getting around.

11C - Equipment and wheelchairs
This information sheet looks at ways to make daily life easier by using a range of equipment, including wheelchairs, and how to access this support.

11E - Environmental controls
Detail on environmental controls and how they may be helpful if you're living with MND.

End of life support

14A - Advance Decision to Refuse Treatment (ADRT) and advance care planning
Guidance on planning for future care and how to create an Advance Decision to Refuse Treatment (ADRT). This sheet includes a sample completed form and a blank form to print and fill in, if wished. You can also download an interactive version of the form to fill in onscreen.

If you have MND, the following resources can help you make decisions about therapies, treatments or care. Often called patient decision making aids, this type of information is about understanding the choices available and how these might affect you and those close to you.

Motor neurone disease checklist
An interactive form to help you make decisions with your condition and think ahead with MND. This may help you avoid urgent situations. An action plan is included to help you list areas that may need discussion with an appropriate health and social care professional. You can also order this as a printed booklet, which can be filled out by hand.

See also references to forms in the next drop down as further ways to raise awareness of your needs.

What do all the words and initials mean?
Sometimes the words and acronyms used by health and social care services can be confusing, so we've have provided lists with explanations to help give a basic understanding of what they all mean.

Decision making information sheets:

• 7A - Swallowing difficulties
• 7B - Tube feeding
• 8A - Support for breathing problems
• 8B - Ventilation for motor neurone disease

These sheets are also available in other languages.

See also our full range of information sheets elsewhere on this page.

Gastrostomy tube - is it for me?
Researchers at Southampton University have developed a web-based patient decision aid for people with MND considering a gastrostomy tube. It aims to help people living with MND choose whether they want to have a gastrostomy tube fitted now. If they decide not to go ahead, they may want to revisit the decision later.

MyTube
Developed by Sheffield Institute for Translational Neuroscience (SITraN), MyTube is a useful online resource containing short videos and information about gastrostomy to help people with MND learn more and make decisions about the intervention. It features both health professionals, and people with MND discussing their experiences.

myBreathing
Developed by SITraN – the Sheffield Institute for Translational Neuroscience and made in collaboration with people living with MND, their videos help explore decision-making about assisted ventilation and how it is used in daily life.

End of life: a guide for people with motor neurone disease
Our comprehensive and candid guide to help people with end of life decisions and opening difficult conversations with family and professionals. You can download this guide in full or by section. You may wish to look at our introductory flyer, which explains the type of content inside the guide.

14A - Advance Decision to Refuse Treatment (ADRT) and advance care planning
Guidance on planning for future care and how to create an Advance Decision to Refuse Treatment (ADRT). This sheet includes a sample completed form and a blank form to print and fill in, if wished. You can also download an interactive version of the form to fill in onscreen.

The following items are all designed to help you make other people aware of your needs, wishes or preferences.

Using our forms to record your needs

Our write-on forms to help you keep track and record your needs. These are for your own use and to share with health and social care professionals.

Please do not send these forms to the MND Association when completed.

Some of these forms are interactive, which means you can fill them in on screen, as follows:

1 – Use your mouse or tab key to move through the fields. Add text as required.
2 – Use your mouse or enter key to add a tick into a box.
3 – Save the completed form to your computer to change the entries at any time.
4 – Print the form if you need to add a signature or photographs to share.

If a form is not interactive, you can still download and save it to your computer, but you will need to print the form for it to be completed by hand. Download any of these resources by selecting the title.

Forms

Understanding My Needs
An interactive personal form that enables you to record your needs with MND. This can help care workers and hospital staff provide appropriate care according to your wishes. You can also order this as a printed booklet, which can be filled out by hand.

Motor neurone disease checklist
An interactive form to help you manage your condition and think ahead with MND. This may help you avoid urgent situations. An action plan is included to help you list areas that may need discussion with an appropriate health and social care professional. You can also order this as a printed booklet, which can be filled out by hand.

Advance Decision to Refuse Treatment (ADRT) form
An interactive version of the ADRT form included in information sheet 14A - Advance decision to refuse treatment (ADRT) and advance care planning. If you become unable to make decisions or communicate, an ADRT allows you to state in advance which treatments you wish to refuse or withdraw in specific circumstances.

Helping you to keep track
These write-on pages are taken from the Living with motor neurone disease guide. These pages are not interactive, but can be printed and filled in by hand, if needed.

Further resources to help communicate your needs

Compact resources to help you communicate your needs to anyone involved in your care. Select from the following, or order a printed copy from our helpline, MND Connect.

What you should expect from your care
Our pocket sized booklet to support discussions with health and social care professionals. This may help lead to better outcomes for treatment and care with MND and contains the main points from the NICE guideline on motor neurone disease.

Speech cards and notepads for people with speech difficulties
Our speech cards and notepads are printed items for order. However, sharing the following statement can let others know if you have speech difficulties:

“I have a physical problem which affects my speech, but I can hear and understand you. Your help and patience would be appreciated. Thank you.”

MND Alerts

Our MND Alert Card and MND Alert Wristband can be ordered as physical items through our MND Connect helpline.

We have also produced a downloadable MND Alert to use on your mobile phone or to print at home. Try to have an alert with you at all times. If you do need emergency help, this lets medical staff know that you have MND and that oxygen should only be used with caution.

Caring and MND: support for you
Our guide to help you look after your own wellbeing if you provide support for a person living with MND. We have included write-on pages to help you keep important records. You can download this guide in full or by section.

Caring and MND: quick guide
The summary version of Caring and MND: support for you. This quick guide is designed to help those new to the caring role, when someone close has been first diagnosed with MND. An audio version of this guide is also available.

Changes to thinking and behaviour with MND
Information to help if you are supporting someone with MND who may be affected by changes to thinking and behaviour.

Telling people about MND
Support for raising awareness about the needs of someone with MND, including use of an advocate who can speak on behalf of the person who has been diagnosed. This may be needed if they have problems with their speech.

10A - Benefits and entitlements
Information on relevant benefits and entitlements, whether you may qualify and how to apply.

Sex and relationships
Our booklet containing information answering possible concerns about sexual expression and intimacy, for anyone affected by MND.

Finding your way with bereavement Our booklet on finding emotional support when bereaved. Includes a practical overview of what to do when someone dies, and supporting children and young people who may also be grieving.

Supporting children and young people
A guide to help parents, guardians, teachers, social workers and clinical professionals when supporting children or young people affected by MND.

The following resources are shown under two headings:

• Information to help you support younger people affected by MND
• Information for use by children and young people

Information to help you support younger people affected by MND

Telling people about MND
This booklet includes guidance on how communicate about MND with family, children, friends, colleagues and health or social care professionals.

10G - Support for families with children
Our information sheet to help explain some of the benefits and other types of support available to families with children.

Supporting children and young people close to someone with MND
A guide that you can share with teachers, social workers and other professionals who may support younger members of the family. This may help them understand the challenges of MND, so they can provide appropriate support

Section 5: Family, children and friends (Living with motor neurone disease guide)
This section of our main guide for people with MND looks at ways for the whole family and friends to communicate about the changes the disease will bring.

Section 9: Support for children and young people (Caring and MND: support for you guide)
This section of our main guide for carers guide looks at ways to support younger members of the family.

Section 7: Discussions with family and children (End of life: a guide for people with MND)
This section of our guide about planning ahead, looks at how to handle sensitive conversations to help everyone feel better prepared.

Information for use by children and young people

See also our hub for Children and young people which includes guidance for parents and guardians.

MND Buddies
Our online activity hub for children aged 4-10. Friendly animal characters gently introduce MND facts through games, stories and activities. With help from a grown-up, children can also send in their artwork and writing to share in the galleries.

Why are things changing?
Our storybook, featuring three family-based stories to help young children identify with the characters and begin to adjust to the changes that MND can bring to family life. You can also visit our online activity hub for children, MND Buddies, to read and listen to the stories, along with games and other activities.

When someone close has MND: a workbook for children aged 4 to 10
An interactive workbook to help a trusted adult communicate with children about MND. The activity pages help the child work out ways to cope with changes happening around them. Only available in print.

So what is MND, anyway?
A comprehensive guide about MND for young people and young carers. An accompanying web app is also available for use on mobile phones and tablet computers.

It can feel challenging to plan ahead for future care and end of life, but this can help ensure your wishes are respected. It may also help those close to you feel better prepared.

End of life: a guide for people with motor neurone disease
Our comprehensive and candid guide to help people with MND plan ahead and communicate their end of life decisions to family and professionals. You can download this guide in full or by section.

14A - Advance Decision to Refuse Treatment (ADRT) and advance care planning
Guidance on planning for future care and how to create an Advance Decision to Refuse Treatment (ADRT). This sheet includes a sample completed form and a blank form to print and fill in, if wished. You can also download an interactive form to fill in onscreen.

Finding your way with bereavement
Our booklet on finding emotional support when bereaved. Includes a practical overview of what to do when someone dies, and supporting children and young people who may also be grieving.

What you should expect from your care
Our pocket sized booklet to support discussions with health and social care professionals. This may help lead to better outcomes for treatment and care with MND and contains the main points from the NICE guideline on motor neurone disease.

MND Alerts

Our MND Alert Card and MND Alert Wristband can be ordered as physical items through our MND Connect helpline.

We have also produced a downloadable MND Alert to use on your mobile phone or to print at home. Try to have an alert with you at all times. If you do need emergency help, this lets medical staff know that you have MND and that oxygen should only be used with caution.

MND Just in Case Kit
A box that holds medication that may be needed if a person with MND experiences a sudden change with symptoms such as breathlessness, coughing or sensations of choking. This resource can only be ordered by the person's GP, who can then prescribe medications to be kept in the box. GP's can contact our MND Connect helpline with queries. You may never need to use the kit, but you can keep it at home to provide reassurance if needed. Contact your GP or specialist team if you think you may benefit from having a kit nearby. GPs can see our information sheet for professionals about the MND Just in Case Kit, for more detail.

We welcome your views

We'd love to know what you think about our resources. Select from the feedback forms below:

• Living with motor neurone disease
• Caring and MND – support for you
• Caring and MND: quick guide
• What you should expect from your care
• MND information sheets
• Making the most of life with MND
• When someone close has MND: workbook for children (adult responses)
  A feedback form designed for young children is included at the back of the workbook.
• So what is MND, anyway?
• End of life guide
• Finding your way with bereavement
• Our 'What is...?' animations

You can also give feedback by email to: [email protected]
 

Version numbers and revision dates

Document dates are included at the back of all our resources, and publications listed on our website are always the most current. The document dates show when an item was created or last revised, and when the next revision is due.

A version number is also provided - this tells you if an item has been updated between revisions. This usually happens if something has changed. For example, reforms to government benefits might require a change to our information on benefits.

Check the current version numbers and revision dates for our care resources at: Publication dates.

Corrections to resources

All of our publications are regularly revised. Any corrections pending the next revision are made using a label or inserted sheet with printed copies. Or noted next to the item on this main information page.

Please note: contact details and links to other organisations are checked at time of print, but these can change at any time. If you need help to find an organisation, please contact our helpline, MND Connect.

References

References of evidence used to support our information are available on request from:

Email: [email protected]

Or write to:

Information Feedback, MND Association, Francis Crick House, 6 Summerhouse Road, Northampton, NN3 6BJ

The MND Association is committed to the provision of high quality information that you can trust. All of our health and social care resources are evidenced, user tested and reviewed by experts.

We regularly revise existing publications to ensure our provision remains qualified, credible and reliable. 

Our information provision is accredited through the PIF Tick quality scheme, which adheres to these principles. We achieved this award in August 2020 and you can see the PIF Tick quality mark on our resources.