MND Checklist

Yes

• Is there anyone who can provide that support? 
• Ask to have your needs assessed through your local authority or council in England, Wales or Scotland. In Northern Ireland, ask to be assessed through your local health and social care trust.
• See our Personal care booklet as well as some useful guidance on the Personal care web page.
• Keep contact details for any helpers, including professional care workers, in or near your telephone.
• If you or your carer have any questions or need support, contact our MND Connect helpline.
• Find resources to help with support if you have any dependent children or young people.

No

• If someone is already supporting you, they can ask their local adult social care team for carer's assessment.
• How would you manage if the person supporting you was unable to help you for any reason?
• Find guidance for your carers and family members on our Carers hub or contact our MND Connect helpline.

Yes

• Are you able to order groceries or supplies online, with home delivery?
• Is there anyone who can pick up supplies or help you order online?
• Volunteer support may be available. Ask your local authority or council in England, Wales or Scotland. In Northern Ireland, ask your local health and social care trust.
• Keep helpful contact details in or near your telephone.

No

• If your usual helper is unable to assist, is there anyone else who can do this?

Yes

• See our page on Benefits, financial support and cost of living for general guidance and our information sheet 10E - Work and MND.
• See our Benefits advice service to help you identify and make claims.
• See our pages about Our services for information about our MND Connect helpline, equipment loans, financial support grants and more.
• For information about social care see our page on Needs assessment, home care and home adaptations and information sheet 10B - What is social care?. We also have an introductory animation about social care.

No

• If your circumstances change, you can call our MND Connect helpline at any time.

Yes

• Ask a member of your healthcare team about personal alarm systems in case you are alone and need urgent help.
• Ask for an assessment by an occupational therapist and a physiotherapist to advise on walking aids, helpful changes to your home environment and how to manage falls if they happen again.
• Ask your occupational therapist and physiotherapist to advise your carer on how to help in a way that is safe for you and them.

No

• Ensure your home is free of trip hazards.
• See our page on Safety at home.

Yes

• Ask a member of your healthcare team for a referral to a physiotherapist for an assessment of your needs.
• Ask a member of your healthcare team for a referral to an occupational therapist to assess your home environment for any adaptations.
• Check that your walking aid is in good condition. For example, if the rubber stops at the bottom have worn, they may slip.
• If you feel unsafe using your walking aid, ask your physiotherapist for a review.

No

• See our Mobility and movement web page for further guidance.
• See information sheet 6A - Physiotherapy for guidance on maintaining strength and flexibility for as long as possible.

Yes

• Keep contact details in or near your telephone of helpers, local drivers or taxi firms that can help disabled people.
• Apply for a Blue Badge to park closer to your destination. This can be done on the Gov.uk website for England, Wales and Scotland. In Northern Ireland apply via the NI Direct website.
• See more guidance on travel and transport on the Mobility and movement web page including our Getting around booklet.
• If you have any questions on travel insurance, contact our MND Connect helpline.
• Ask a member of your healthcare team for a referral to a physiotherapist or occupational therapist to assess your needs. They may suggest the use of a hoist or other equipment to help carers move you safely.

No

• If the person supporting you is unable to help for any reason, is there anyone else who can provide that support?
• To think about future needs, see our Mobility and movement web page including information sheet 11C - Equipment and Wheelchairs.

Yes

• Ask your GP or a member of your healthcare team for referral to a physiotherapist for assessment or guidance.
• Ask your physiotherapist how assisted exercise can help with range of movement and flexibility.
• Ask your physiotherapist about ways to manage your energy levels when exercising.
• Find guidance on our Mobility and movement web page which includes our information sheet 6A - Physiotherapy.

No

• If your needs change, you can ask to be referred to a physiotherapist at any time.

Yes

• Ask a member of your healthcare team for a referral to a speech and language therapist who can assess your needs and suggest therapies and communication aids to suit you.
• See our resources on Speech and Communication or contact our Communication aids service for guidance.
• If you use an electronic communication aid, keep a simple aid nearby (such as an alphabet board) in case of power failure.
• If you need translated information see our page about resources in other languages.
• Find resources to help communicate with dependent children or young people.

No

• If you already use communication aids, have your needs been reviewed to see if anything should change?

Yes

• Ask a member of your healthcare team for a referral to a speech and language therapist for guidance.
• See our Communication Aids service web page
• Watch our animation on voice banking and message banking.

No

• If you don't want to use voice banking to use your voice on a communication aid, you can still record specific messages to use at a later date.

Yes

• Ask a member of your healthcare team for a referral to a speech and language therapist, who can advise on swallowing techniques, and consistencies of food and drink.
• Ask a member of your healthcare team for a referral to a dietitian, who can advise about a calorie-rich diet and supplements to help maintain weight. They may also be able to advise on suitable meals by home delivery.
• Ask a member of your healthcare team about liquid medications or patches if you find it difficult to swallow tablets.
• See our Eating and drinking guide and web app for guidance and easy swallow recipes.

No

• See our page on Swallowing, eating and drinking if you get any problems with swallowing, saliva and coughing.

Yes

• Ask your dietitian, speech and language therapist and healthcare team for advice on tube feeding to top-up or replace meals.
• See our resources about tube feeding and decision making on our Swallowing, eating and drinking web page.

No

• If your views change, you can always ask your healthcare team about tube feeding at a later date. It is best to consider this before you lose a significant amount of weight.

Yes

• Find out about the Types of care available to help you with MND.
• Ask a member of your healthcare team for guidance or referrals to specialists, or an MND care centre or network.
• See our web page on Getting the right treatment or care with MND.
• See our pocket guide What you should expect from your care. This can help at appointments and is based on the NICE guideline for the management of MND.
• MND does not usually cause pain directly, but you may get pain from some of the symptoms. See our information sheet range including 6C - Managing pain.
• If your symptoms are caused by Kennedy's disease see our support pages for this condition.

No

• If you get any future symptoms, see our information sheet range or search by need using our Care information finder.

Yes

• Ask your health and social care team for support on any aspect of emotional health.
• For guidance and information resources on emotions, thinking or behaviour, see our Emotions, thinking and behaviour web page.
• Our booklet on Sex and relationships may be helpful if you have questions about intimacy, whether you are with a partner or single.
   

No

• If you need support in the future, find guidance on our Emotions, thinking and behaviour web page.

Yes

• Riluzole may moderately slow the progression of the disease where suitable. Ask a member of your healthcare team for a referral to a neurologist for assessment and guidance.
• If you are prescribed riluzole for MND, home delivery may be available through a local or online pharmacy.
• See our information sheet 5A - Riluzole for more information.

No

• Other drugs for the treatment of MND are emerging. As soon as they become available on prescription we will update our resources.

Yes

• You and your carer are entitled to a free flu jab at your GP surgery, from September each year. With a long-term health condition, you can also ask for a single one-off pneumonia vaccination (it may be repeated every five years, depending on the condition). Your GP or healthcare team can advise, including latest guidance about covid vaccines.
• Ask your local pharmacy if they provide a home delivery service. Prescriptions are free in Wales, Northern Ireland and Scotland. You may also be exempt from prescription charges in England - ask your GP.
• Ask a member of your healthcare team for the best way to get your prescriptions repeated, reviewed or replaced.
• You can get over the counter remedies and first aid kits delivered by a supermarket.
• Regularly check that all medicines are within their use-by date.

No

• If someone picks up your medication for you, do you have a backup if they are unable to help? Keep contact details in or near your telephone.
• Not all symptoms may be due to MND. Ask a member of your healthcare team for guidance if you get any new symptoms.

Yes

• Have you had your breathing assessed by a respiratory team? Ask a member of your healthcare team for a referral.
• See our Breathing and ventilation web page including our information sheet 8A - Support for breathing problems.
• You may be vulnerable to chest infections. Try to avoid being with people who have cold or flu symptoms. Good hand hygiene can help avoid infection. Keep an alcohol hand cleanser nearby for you and your carers.
• If you use a nebuliser, you may want to keep a spare in case your existing device has any problems. (A nebuliser is a device producing a fine spray that can be inhaled.) 

No

• See our page on Breathing and ventilation if you get any future symptoms.

Yes

• Ask a member of your healthcare team for a referral to a respiratory team for assessment and guidance on ventilation.
• See our page on Breathing and ventilation for resources to help with decision making about breathing support, including our information sheet 8B - Ventilation in MND.
• If you rely on your ventilator, ensure you have spare batteries or back-up power in case of a power cut.
• Keep contact details for your respiratory team and for service maintenance in or near your phone. Ensure your carers have these details too.

No

• If you would like to find out more about ventilation in the future, see our web page on Breathing and ventilation.

Yes

• If you have any concerns about your general health, other conditions or personal circumstances, discuss these with your health and social care team. They can provide guidance or direct you to appropriate support.
• You may find it useful to complete our Understanding My Needs form. This personal record can help care workers and hospital staff support you. Contact our MND Connect helpline for a printed version.
• If you live in England or Wales, and your health needs have become complex or urgent, you may qualify for NHS Continuing Healthcare (CHC). See our information sheet or animation for guidance. Scotland operates a different system called Hospital Based Complex Clinical Care. In Northern Ireland, contact your local health and social care trust to see what is available.

No

• See our page on Safety at home for guidance on ways to avoid risk.
• Use our Care information finder to search for resources by need.

Yes

• Ask a member of your healthcare team for a referral to a hospice or specialist palliative care team. They can help manage your symptoms, which may help to avoid hospital admission or make hospital stays shorter.
• See our information sheet 3D - Hospice and palliative care.

No

• If you change your mind, you can ask for a referral at any point. It can be helpful to ask about this as early as possible in case there is a waiting list.

Yes

• When you feel ready, ask a member of your health care team for information about advance care planning.
• See our information sheet 14A - Advanced Decisions to Refuse Treatment (ADRT) and advanced care planning to help guide people in your care if you become unable to communicate or make decisions for yourself.
• See the sections on Decision making, Forms and resources to help communicate your needs, and Planning ahead on our page about Information for people with or affected by MND.

No

• If you don't feel ready to tackle this yet, you can return at any point to our Planning ahead page.