Safety at home

If your independence is affected by MND or Kennedy’s disease, you may be worried about:

• your safety and accessibility within the home
• avoiding accidents and managing falls
• online safety and scams
• how to prepare for an evacuation if there’s a fire
• what to do if there’s a power cut and you’re using assisted ventilation
• how to get emergency care cover if you find yourself without support.

Being informed is the first step, as this can help you feel as prepared as possible. Planning ahead can help you avoid potential accidents and injury.

See the drop-down options on this page for suggestions.

Our MND Checklist can help you think about what you might need in terms of support.

You may also find it useful to explore our web pages about:

Benefits, entitlements and cost of living

Information for people with or affected by MND

Useful organisations

Our MND Connect helpline team can also help you with practical guidance and emotional support.

You may already have support in place for safety at home. However, the following suggestions could help.

How can I improve accessibility at home and avoid injury?

Equipment, environmental controls, installations and home adaptations can be expensive, but you may qualify for support through loans and grants. If you need support for any of the following, ask for help.

If you are mobile:

• keep floors dry and remove trip hazards, such as furniture that blocks a pathway or rugs that catch your foot
• place a chair in a safe spot in your hallway, where you can rest if needed
• pad sharp edges on tables, desks and work surfaces in case you lose balance
• think about using a walking frame or rollator to help you get around.

If you are in a wheelchair:

• widen doorways for better access
• consider equipment such as hoists for transfer from wheelchair to bath or bed
• if you decide to have a stairlift, you’ll need a wheelchair on both floors, and possibly a hoist
• a through floor lift can help with access to upstairs.

For guidance, see our information sheets:

10C – Disabled Facilities Grants and home accessibility
11C – Equipment and wheelchairs
11E – Environmental controls

How can assistive equipment help me?

For many people, the thought of using equipment and gadgets designed to help with disability can feel like ‘giving in’. Yet this type of support can help you remain independent for longer and provide support to help with your personal safety. For example, walking frames, shower seats and kitchen perching stools can all help if your mobility is affected.

For guidance, see our information sheets:

10C – Disabled Facilities Grants and home accessibility
11C – Equipment and wheelchairs

And our booklet:

Personal care

What alarms or environmental controls could help me?

Think about the following items if you don’t already have them in place:

• a home alarm for property protection
• smoke detectors to warn of fire
• carbon monoxide detectors to warn if levels of this gas rise
• a personal alarm system in case you have a fall
• environmental controls to operate home appliances using remote control with adapted switches.

See 11E – Environmental controls in our information sheet range for guidance on alarms and remote control systems.

Who can help with guidance about managing falls?

If your mobility or balance have been affected by MND or Kennedy’s disease, you may be at risk of falls. However, your needs will change depending on your symptoms and how much they affect you.

Tailored advice on falls and how to recover can help:

• your occupational therapist can assess your home environment and how to adapt that to prevent falls as much as possible
• your physiotherapist can assess your physical needs and recommend a plan of action should there be a fall.

Any guidance or equipment may have to be reviewed as your needs change.

Your carer may also need guidance on:

• how to check you for injury
• training to help lift you safely following a fall (where you have not been injured)
• what not to do if they have any health issues themselves and who to contact for urgent support.

What is a personal evacuation plan?

A personal evacuation plan covers how you can be evacuated if you would find it difficult to respond to a fire alarm, or exit your home unaided, in an emergency.

Your PEEP should cover your escape routes, with clear exits on floor layouts. You should be able to operate any security devices or locks on exit points. This may be possible using adapted switches and remote control, with an environmental control system. If you still need support, you may need to ensure care cover at all times.

Ask about a PEEP during your needs assessment with adult social care services. They may have guidance and sample versions that can be adapted to your needs. They can also look at your safety at home, local services and urgent care cover.

Ensure that you have smoke alarms installed and that they are working.

How can I prepare for power cuts, especially if relying on assisted ventilation?

If you have MND, register with your energy provider as a vulnerable person and you will get forewarning of any planned power cuts. This can help you feel more prepared if you need to switch to battery power for assisted ventilation or automated tube feeding.

Your provider may also offer further advice and support on back up power from batteries.

Find out more on how to prepare for power cuts from the British Pharmaceutical Nutrition Group.

How can I get emergency care cover if needed?

Getting your needs assessed by adult social care services can help you access a range of care services when needed.  The assessment can help you explore urgent care and local contact numbers for out of hours support.

See our page on Needs assessment for more guidance. Our MND Checklist can help you think about the help you might need for care support.

With MND or Kennedy's disease, you may experience problems with speech and communication. There are simple aids to help you raise awareness of your needs, but also electronic apps that you can use on phones, laptops or other devices. See our page on Speech and communication to find out more and our Communication Aids Service for support that we can provide at the MND Association.

Many organisations and services operate text helplines or offer email support. Sometimes this is through a contact page on a website. See our list of Useful organisations to explore some of the options.

How do I call for help in an emergency?

Emergency SMS: If you need to call the emergency services on 999 but cannot speak, text them through Emergency SMS. You need to register your mobile phone in advance. For more information on this service see: www.emergencysms.net

The RelayUK app: can be downloaded to your phone and used to have a real time conversation with a person if you can’t hear, speak or either. Once downloaded you’ll be able to read what the caller is saying to you and type back your response. Find out more at: www.relayuk.bt.com

Call alarms: there are many personal alarms you can wear to allow you to call for help in an emergency. Discuss which one could suit your needs with a member of your healthcare team .

Many of us use internet facilities and applications for a range of purposes, whether for communication, entertainment, shopping or services. This can lead to worry about online safety, fraud or identity theft.

Accessing web sites and apps

Always think carefully before:

• signing up to a new site and giving your personal details
• purchasing a product or service and giving your payment details.

Find out more about making safe payments at UK Finance (you need to become a member to access this content).

Access a jargon buster and other guidance through Independent Age.

Keep a watch on sites that hold your data, such as banks. Making regular online checks on your bank or savings accounts can help you spot signs of fraud. The sooner you tackle issues, the better your chances of avoiding further loss.

Use secure passwords to set up an account or membership on an internet site. This usually means your password needs a combination of letters, numbers and special characters, such as a dash or symbol.

You may seek support online, especially if you communicate this way due to speech problems. If you feel vulnerable and you do not want other people to know, you can delete your browsing history. This can change according to the type of device or platform you use, so search for How do I delete my browsing history?

Avoiding scams

Telephone, email and online scams are not new, but unfortunately this type of fraud is on the rise at the moment. Scams are becoming more complex and detailed, so may not be easy to spot.

Scams often attempt to steal your bank details. Think carefully before giving out any personal details or making any kind of payment.

You can find more advice on how to spot, avoid and report scams through Citizens Advice and Money Saving Expert. There is also the Stop Scams UK website which gives information about the Call 159 service if you have concerns about financial scams.

Our MND Connect helpline team can help with information, support, a chance to talk and guidance about our services, or external services to suit your needs. Contact the helpline by:
Telephone: 0808 802 6262
Email: [email protected]

We provide a range of support services, including local support through branches and groups. Our Association visitors are trained volunteers, who can offer guidance by phone, email or home visits where available.

We also offer financial support through a range of grants that may help with personal safety support, such as sourcing equipment.

See our web hub on Support and information for local support and more about our services.

The following list gives examples of organisations that offer support on aspects of safety around the home or online. Our MND Connect helpline team can also help guide you to our services or identify specialist organisations as needed.

See our web page on useful organisations for a wider list of providers and services that can help if you are living with or affected by MND or Kennedy's disease.

You may also find some helpful contacts through your local authority in England and Wales, or your local health and social care trust in Northern Ireland.

Citizens Advice
For guidance on a range of topics, Search on safety or debt for example.

Emergency SMS
Register your mobile phone in advance here, to text emergency services on 999 if you have speech difficulties.

Fire Kills
Government safety campaign and guidance on fire safety in your home.

Independent Age
For a range of information including guides on staying safe.

Money Saving Expert
For ways to save on costs and how to avoid scams.

RelayUK
Find an app here to download to your phone, which allows you to read what the caller is saying to you and type back your response.

ROSPA - the Royal Society for the Prevention of Accidents
Guidance on safety at home and in other environments.

UK Finance
Includes advice on making safe payments online.