Your MND Clinical Specialist does not cover out of hours emergencies. If you have a medical emergency please contact your GP’s out of hours services, call NHS 24 on 111 or call the emergency services on 999.

Alternatively, if you need to speak to someone straight away, you may wish to call the Samaritans. The number for the Samaritans is 116 123 (no area code required).

It is important that you and your family plan ahead and have discussed what to do and who to call if there is an emergency. Please see our section on Anticipatory Care Planning (ACP) for guidance on planning for emergencies.

You may not think of yourself as a 'carer' but family members and friends who care for someone with Motor Neurone Disease (MND) may also need help and support. 

Videos for Carers

We have developed animated videos with practical tips and advice, using the real voices and experiences of people affected by MND, on a series of topics. Find out more.   

Carers Organisations across Scotland include:

There are many organisations that may be helpful to give relevant advice to make life easier:

National 

• Care Inspectorate
• Carers Scotland
• Coalition of Carers in Scotland
• Carers Trust
• Crossroads Caring Scotland
• Shared Care Scotland
• Royal Voluntary Service (formerly WRVS)
• ALISS (Access to Local Information to Support Self-Management)
• Scottish  Independent Advocacy Services
• Disability Information Scotland (formerly known as Update Scotland)
• Care Information Scotland

Local

• Carers Link (East Dunbartonshire)
• South Lanarkshire Carers Network Limited
• Vocal (Voice of Carers Across Lothian).
• Wee Break Midlothian

 MND Scotland also has a network of Support Groups around Scotland that may be helpful too.

Below is our list of websites of organisations and companies which specialise in accessible accommodation and holidays:

• Access at Last 
• Accessible Scotland 
• Altogether Travel - supported holidays
• CanBeDone  
• Crathie Opportunity Holidays 
• Disabled Access Holidays 
• Disability Holidays Guide 
• Enable Holidays 
• Good Access Guide 
• IKnow-Scotland
• Limitless Travel 
• Livability Holidays 
• Sage Travel
• Shared Care Scotland
• Tourism for All 
• Revitalise

MND Scotland Holiday Facilities 

We offer two accessible holiday facilities for use by people affected by MND and others with physical disabilities. Our chalet is located in Tralee Bay, near Oban and our accessible holiday lodge is located near St Andrews. Find out more. 

Respite

Leuchie House

Equipment Hire

• ArjoHuntleigh
• Ceiling Hoist Users Club
• Direct Mobility
• Disabled Living Foundation
• Independent Living
• Mobility Hire
• Mobility Equipment Hire Direct
• National Mobility Hire
• Trip Mobility
• Wheel Freedom Ltd

Toilets and Changing Places

If you need a place to stop for a comfort break, why not check out the Changing Places Toilet map. You may also find it really useful to buy a Radar key. As part of the National Key Scheme, a Radar key will will you access to locked public toilets across the country.

Euan’s Guide

If you have visited somewhere you would recommend to others, please post your feedback on Euan’s Guide.

Created in 2013, Euan’s Guide is a website where people can post their reviews of the accessibility of venues such as hotels, bars, restaurants, theatres and visitor attractions.  As well as tourism and entertainment venues, Euan’s Guide  features disabled access reviews of any place that is visited as part of everyday life such as post offices, railway stations, supermarkets and many others. 

You can search for reviews of areas that you are going to, and add reviews of places you have been. 

• ALS411- All for Kids
• Lou Gehrig’s Disease (ALS) Nemours Foundation
• List of suggested reading materials

See more on our research pages.

See more on our Resources for Professionals page.

• International Alliance of ALS/MND Associations
• Motor Neurone Disease Association

• MND Together Facebook Group
• Health Talk Online
• Patientslikeme
• ALS Worldwide
• YouTube videos of patients
• Patient Opinion Scotland

• Factsheets
• List of suggested reading materials for parents, children and teenagers 2019
• List of suggested reading materials for patients and families 2018