Here’s everything we found
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MND - an overview
Web pages about MND Web page
For basic facts about MND and what to think about when newly diagnosed.
Web pages about support and information Web page
For further reading on symptoms, support and our services, when living with or affected by MND.
Animation: What is MND? Video
https://www.youtube.com
Our short animation about the disease, along with other introductory animations.
How to find out more Web page
A leaflet with basic facts about MND and how to find out more from the MND Association.
An introduction to motor neurone disease MND Web page
A small booklet with a short overview of MND.
An introduction to motor neurone disease (MND) - audio Web page
https://soundcloud.com
An audio version of our booklet about MND, hosted through SoundCloud.
An easy read guide to motor neurone disease (MND) PDF
To help with reading difficulties or learning disabilities – endorsed by Mencap.
Living with motor neurone disease Web page
Our comprehensive guide to help manage daily life with MND. Access the guide in full or section by section.
2C - Primary lateral sclerosis PDF
Our information sheet about this slow progressing form of MND.
2D - Progressive muscular atrophy PDF
Our information sheet about this rare form of MND.
Podcast - MND Matters Web page
Our podcast series, giving people with or affected by MND or Kennedy's disease the chance to share their stories.
Web page for all of our care information resources Web page
Our main web page list, for access to all of our resources for care information.
Motor neurone disease checklist Web page
https://www.surveymonkey.co.uk
This PDF is an interactive form to help you manage your condition and think ahead with MND.
Telling people about MND Web page
How to open conversations about your diagnosis with family, children, friends, colleagues and professionals.
What you should expect from your care Web page
Our pocket guide to support discussions with professionals, based on the NICE guideline.
Next section below
Treatments and medication
Understanding My Needs Web page
This PDF is an interactive form to record your care needs with MND to guide hospital staff and care workers.
Web pages on health and social care Web page
Guidance on available types of care, treatment and medication.
What you should expect from your care Web page
Our pocket guide to support discussions with professionals, based on the NICE guideline.
1A - About the NICE guideline on MND PDF
Our information sheet about the NICE guideline on MND, which gives recommendations to professionals about treatment, care and support for people with or affected by the disease.
3A - MND care centres and networks PDF
Our information sheet about MND care centres and networks, part-funded by the MND Association.
3D - Hospice and palliative care PDF
Our information sheet about the benefits of early referral to hospice and palliative care.
5A - Riluzole PDF
Our information sheet about riluzole, the only drug licensed in the UK to help prolong survival with MND, by several months.
6A - Physiotherapy PDF
Our information sheet about physiotherapy and how it can help, including how to access this support.
6B - Complementary therapies PDF
Our information sheet about complementary therapies, which some people find helpful to relieve symptoms and stress.
6C - Managing pain PDF
Our information sheet on how to find support for pain with MND, particularly if due to problems with movement or mobility.
10D - NHS continuing healthcare PDF
Our information sheet about NHS continuing healthcare and how to apply for this fully funded health and social care, if your primary healthcare needs become urgent and complex.
10F - Personal health budgets PDF
Information on personal health budgets to give more choice and control over the healthcare services you receive. For people living with MND or Kennedy's disease in England.
Next section below
Kennedy's disease - an overview
Web pages about Kennedy’s disease Web page
These pages include basic facts about Kennedy's disease and how to find further support.
Animation: What is Kennedy's disease? Video
https://www.youtube.com
Our short animation about the disease, along with other introductory animations.
Other resources useful with Kennedy's disease Web page
A list of all of our care information for MND. Many of these resources are inclusive of Kennedy's disease, as both diseases share similar symptoms and physical difficulties.
2B - Kennedy's disease PDF
Our information sheet about Kennedy's disease and available support.
Next section below
Personal care
10B - What is social care? PDF
Guidance on social care, including getting your needs assessed, who pays for any agreed care services and how to use direct payments for choice and control over services.
Living with motor neurone disease Web page
Our comprehensive guide to help manage daily life with MND. Access the guide in full or section by section.
What you should expect from your care Web page
Our pocket guide to support discussions with professionals, based on the NICE guideline.
Web page on personal care Web page
Guidance about how to prolong independence with daily routines and intimate personal care, including how to get support when needed.
Motor neurone disease checklist Web page
https://www.surveymonkey.co.uk
This PDF is an interactive form to help you manage your condition and think ahead with MND.
Understanding My Needs Web page
This PDF is an interactive form to record your care needs with MND to guide hospital staff and care workers.
Personal care Web page
Our booklet on ways to prolong independence with personal care and daily routines, and how to get support.
Next section below
Mobility, movement, pain and twitching
Web page on mobility and movement Web page
An overview about mobility and movement, including the support available.
Web page on health and social care Web page
Guidance on the types of health and social care support you may need with MND or Kennedy's disease, including treatments and medication.
6A - Physiotherapy PDF
Guidance on how physiotherapy can help if you have problems with mobility, movement or stiff muscles, and how to access this support.
6C - Managing pain PDF
How to find support if you experience pain, particularly if due to problems with movement or mobility.
11C - Equipment and wheelchairs PDF
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 PDF
Detail on environmental controls and how they can help with remote control of facilities in your home.
Making the most of life with MND Web page
Our booklet on quality of life, interests and finding different ways to do things.
Getting around Web page
Our booklet about driving, transport, travel and holidays if you need support with MND or Kennedy's disease.
Next section below
Speech and communication
Animation: What is voice banking and message banking? Video
https://www.youtube.com
Our short animation about how to use a version of your own voice on communication aids, along with other introductory animations.
Telling people about MND Web page
How to open conversations about your diagnosis with family, children, friends, colleagues and professionals.
Understanding My Needs Web page
This PDF is an interactive form to record your care needs with MND to guide hospital staff and care workers.
Web page on speech and communication Web page
Guidance on support for problems with speech and communication.
Communication aids service Web page
How we can help if you are thinking about which communication aids to use or whether to try voice banking.
7C - Speech and communication support PDF
Information about how to access support if you have problems with your speech or communication, with either MND or Kennedy's disease.
7D - Voice banking and message banking PDF
Guidance on voice banking to create a computerised version of your voice for use on a communication aid and on saving a bank of recorded messages.
Next section below
Support for carers, family members and partners
Web pages for adult carers and family members Web page
Guidance for adults affected by MND and anyone who provides unpaid care support to a person with MND.
Caring and MND: quick guide Web page
https://www.smartsurvey.co.uk
A booklet to help those new to the caring role, when someone close has MND.
Caring and MND: support for you Web page
Our comprehensive guide to support your wellbeing, if you are supporting a person with MND or Kennedy's disease. You can access the full guide here or each separate section as needed.
Telling people about MND Web page
How to open conversations about an MND diagnosis with family, children, friends, colleagues and professionals.
Finding your way with bereavement Web page
A booklet about finding support with anticipated grief and bereavement.
Web page on bereavement support Web page
Guidance about the different types of support available to help following a bereavement.
Next section below
Swallowing, eating and drinking
Web page on swallowing, eating and drinking Web page
Guidance on difficulties with swallowing, eating and drinking, including problems with saliva.
Eating and drinking with motor neurone disease (MND) guide Web page
To help people with MND adapt how they eat and drink, if needed. It includes information, tips and easy-swallow recipes.
Eating and drinking with motor neurone disease (MND) – web app Web page
https://eatingwithmndapp.mndassociation.org
The web app version of this guide for use on screens and mobile devices. To help people with MND adapt how they eat and drink, if needed. It includes information, tips and easy-swallow recipes.
7A - Swallowing difficulties PDF
An information sheet to help manage concerns about swallowing difficulties, saliva, coughing and choking with MND.
7B - Tube feeding PDF
An information sheet to help with decision making about tube feeding, if you have swallowing, eating or drinking difficulties.
myTube website Web page
https://mytube.mymnd.org.uk
Videos about tube feeding, from people living with and affected by MND. This website was developed by SITraN, the Sheffield Institute for Translational Neuroscience, and part-funded by the MND Association.
Next section below
Support for children and young people
Web pages for children, young people, parents and guardians Web page
Guidance to help support children and young people, including information for parents and guardians.
Telling people about MND Web page
A booklet to help open conversations about an MND diagnosis with other people, including with children and young people.
MND Buddies Web page
https://www.mndbuddies.org
Our online activity hub for children aged 4-10, providing MND facts in a gentle way through games, stories and activities.
When someone close has MND: a workbook for children aged 4 to 10 Web page
A printed activity workbook that you can order for a trusted adult to communicate with children about MND. Find out more here on our web hub for children, young people, and parents and guardians.
So what is MND, anyway? Web page
A comprehensive guide about MND, for young people and young carers.
So what is MND, anyway? (web app) Web page
https://cypapp.mndassociation.org
Our guide about MND for young people and young carers in a web app format for use on mobile devices.
Next section below
Emotions, thinking and behaviour
Making the most of life with MND Web page
Our booklet on quality of life, interests and finding different ways to do things.
Web page on emotions, thinking and behaviour Web page
Guidance on emotional and psychological support. This web page also includes information on changes to thinking and behaviour, which can affect some people with MND.
Emotional and psychological support Web page
A booklet to help people emotional and psychological support, with the types of therapy available.
Changes to thinking and behaviour with MND Web page
A booklet about possible changes to thinking and behaviour with MND, to support people with MND, their carers and families.
6B - Complementary therapies PDF
Our information sheet about complementary therapies, which many people find helpful for easing stress and anxiety.
Telling people about MND Web page
How to open conversations about your diagnosis with family, children, friends, colleagues and professionals.
Next section below
e-Book formats and other languages
1B - Health information in other languages or formats PDF
An information sheet for people who need a specific format or language to help them understand information when making decisions about their health and social care.
Web page for other languages and formats Web page
Guidance for those who need information in a specific format, including a list of all resources currently available in other languages.
An introduction to motor neurone disease (MND) Web page
Our short booklet about MND for use on e-reader apps. Tested on Apple Books for iPad and iPhone, and Google Books or Adobe Digital Editions for Android devices.
2B - Kennedy's disease PDF
Our information sheet about Kennedy's disease for use on e-reader apps. Tested on Apple Books for iPad and iPhone, and Google Books or Adobe Digital Editions for Android devices.
7A - Swallowing difficulties PDF
Our information sheet about swallowing difficulties for use on e-reader apps. Tested on Apple Books for iPad and iPhone, and Google Books or Adobe Digital Editions for Android devices.
7B - Tube feeding PDF
Our information sheet about tube feeding for use on e-reader apps. Tested on Apple Books for iPad and iPhone, and Google Books or Adobe Digital Editions for Android devices.
8A - Support for breathing problems PDF
Our information sheet about support for breathing problems for use on e-reader apps. Tested on Apple Books for iPad and iPhone, and Google Books or Adobe Digital Editions for Android devices.
8B - Ventilation for motor neurone disease (MND) PDF
Our information sheet about ventilation for motor neurone disease, for use on e-reader apps. Tested on Apple Books for iPad and iPhone, and Google Books or Adobe Digital Editions for Android devices.
Next section below
Breathing problems
8A - Support for breathing problems PDF
Our information sheet about the way MND can affect breathing, including how symptoms can be managed.
8B - Ventilation for motor neurone disease PDF
Our information sheet on types of assisted ventilation, that can help support breathing.
8C - Withdrawal of ventilation with MND PDF
Our information sheet on how ventilation can be withdrawn, if wished, with questions to raise with the professionals who support.
8D - Air travel and ventilation for motor neurone disease PDF
Our information sheet on what to think about with air travel, if you want to take NIV equipment on the journey.
Web page on breathing and ventilation Web page
Guidance on breathing problems and available support, including decision-making around assisted ventilation.
myBreathing website Web page
http://mybreathing.mymnd.org.uk
Videos about assisted ventilation from people with or affected by MND. Part-funded by the MND Association and developed by SITraN, the Sheffield Institute for Translational Neuroscience.
Next section below
Planning ahead and end of life decisions
8C - Withdrawal of ventilation with MND PDF
Our information sheet about how ventilation can be withdrawn if wished, with questions to ask the professionals who support.
Web page on planning ahead Web page
Guidance on planning ahead for future care.
What you should expect from your care Web page
Our pocket guide to support discussions with professionals, based on the NICE guideline.
1A - About the NICE guideline on MND PDF
Our information sheet about the NICE guideline on MND, which gives recommendations to professionals about treatment, care and support for people with MND.
Motor neurone disease checklist Web page
https://www.surveymonkey.co.uk
An interactive form to help you manage your condition and think ahead with MND.
End of life: a guide for people with MND Web page
Our comprehensive guide on decision making about future care and getting your affairs in order. Access the full guide here or each separate section as needed.
Understanding My Needs Web page
This PDF is an interactive form to record your care needs with MND, to help guide hospital staff and care workers.
MND Alert Card Web page
Carry this card to let emergency medical staff know you have MND and may be at risk with oxygen therapy. Use this downloadable version for quick reference on a mobile device. If you order the printed card, you can add written details of your key contacts.
3D - Hospice and palliative care PDF
Our information sheet about the benefits of early referral to hospice and palliative care.
14A - Advance Decision to Refuse Treatment (ADRT) and advance care planning PDF
Our information sheet about making advance decisions, including a sample completed ADRT form and a blank form.
Advance Decision to Refuse Treatment (ADRT) form PDF
An interactive version of the ADRT form that you can complete on screen, then save and print.
Next section below
Social care and financial support
10B - What is social care? PDF
10C - Disabled Facilities Grants PDF
10E - Work and motor neurone disease PDF
Web page on personal care Web page
Motor neurone disease checklist Web page
Web page on health and social care Web page
Benefits Advice Service Web page
10A - Benefits and entitlements PDF
10D - NHS continuing healthcare PDF
10F - Personal health budgets PDF
10G - Support for families with children PDF