Getting Help2019-11-28T17:44:55+00:00

For national information and support

contact the MND Connect helpline

or connect with others online at:

Frequently Asked Questions

What is Motor Neurone Disease (MND)?2019-11-28T17:41:08+00:00

Motor Neurone Disease (MND) is the name given to a group of diseases affecting the motor neurones (nerve cells) in the brain and spinal cord. As the motor neurones gradually die, the muscles stop working.

MND affects around 5,000 people in the UK at any one time. It is a rapidly progressive neurodegenerative disease that can affect any adult at any time. There is as yet no known cure. Degeneration of the motor neurones leads to wasting and weakness of the muscles causing increasing loss of mobility and difficulties with speech, swallowing and breathing.

What’s that? is still a common response when people hear the words Motor Neurone Disease.

We aim to raise awareness of the disease via this website, via our newsletter, via local media and by word of mouth.

We want everyone to know about MND and what it means for people and their families so that they will join us in fighting for the best standards of care and for more research.

Awareness raising can involve talking to groups, acting as the voice for MND at meetings, using displays and leaflets, writing to MPs, making the case for service funding with the Primary Care Trust (PCT).

Once people find out about the impact of this devastating disease on families we know they will be keen to support the fight for better care and more research.

(For more information and many helpful links please visit the MND Association website)

Newly Diagnosed with MND2019-11-28T17:41:01+00:00

If you or someone close to you has been newly diagnosed with MND and would like more information about what to do next the main MND Association website can be helpful.

If you live in the southern part of West Sussex please contact us via email and we will get back to you very quickly.

If you would like to talk to someone now please call mnd connect.

MND Connect is part of the Association’s care information service and is open to anyone who wants information about MND including people with MND, family members, health and social care staff, students and members of the public. MND Connect is more than just a helpline. MND Connect offers people access to a quick route to get advice, practical and emotional support and directing to other services and agencies.

MND Connect is available 9am to 5pm and 7pm to 10.30pm Mondays to Fridays. Calls charged at local rate. Contact Number 08088 026262

Do you offer any local Support and Care?2019-11-28T17:41:15+00:00

Association Visitors and how they can help:

The branch has a team of 6 professionally trained and supervised Association Visitors. After diagnosis most neurologists give information about the local support available from the MND Association. With permission, an informal referral is made to the AV co-ordinator. An AV will then make contact and arrange either a visit or a follow up phone call. The timing of this is very much arranged to suit the wishes of the person involved. Talking with their AV and knowing that there is someone at the end of the phone often helps relieve the feeling of desperate isolation which can overwhelm people when they have just found out that they have MND.

An AV will let you know how the MND Association can be helpful, when and where meetings are held, how to apply for benefits and how to access specialised equipment. The branch is able to provide equipment which is not available or not available quickly enough from statutory services. A riser-recliner chair for instance can usually be made available very quickly but is always done in conjunction with the Occupational Therapist. Similarly the provision of a communication aid which may be accessed from an MND Association supply held nationally will be made at the request of the Speech & Language Therapist.

Many years ago our very first AV said she wanted to help people keep one step ahead. Care and equipment needs sometimes change very rapidly. The AV can help anticipate this in such a way that whatever is needed is provided in a timely way. They can also help by acting as an advocate and will make requests for specific funding to the branch committee which meets each month.

The AV Team

Angela Burgess, Sandy Barrett, Pattie Shaw, Anne Coleman, Pru Tearall and Sue Reeves

Becoming an Association Visitor

Are you a good listener? Caring? Practical? Would you be interested in joining our AV team? Excellent award winning professional training given. Ongoing support and update days provided. Out of pocket expenses reimbursed. For more information or to find out more visit the MND Association website or contact Sandy Barrett on 07711 987671

What about Research into MND?2019-11-28T17:38:08+00:00

Research to find a cure or – at the least – effective treatments, is always top of the list of priorities for people and families who have been personally affected by MND.

Every year a proportion of the money raised locally is directed specifically to research. Often people undertaking sponsored challenges decide that all or part of the money raised will go to research.

People with MND are encouraged to take part in clinical research projects if they so wish.

Please visit the national website clicking on
to access up to date information on all aspects of research and to see which projects the Association is currently funding.

Support for Health & Social Care Professionals2019-11-28T17:36:22+00:00

The branch plays an active part in liaising and networking with health and social care professionals aiming for the best possible care for people with MND.

Because MND is a relatively rare disease the branch supports extra training and education about MND care for health and social care professionals. We are able to offer part sponsorship for people to attend local seminars, regional and sometimes national and international conferences.

The MND Association produces a very wide range of publications including leaflets and comprehensive guidelines on aspects of care management all of which are available via the main website www.mndassociation.org and follow links to publications either as downloads or to order by post by contacting the MND Connect team on 08088 026262

MND Video Intro

Living with MND

The challenges can feel overwhelming. Planning ahead can help you maintain the best possible quality of life.

Lee’s Story

Mobility & Personal Care

Movement and mobility are likely to be affected by MND and these symptoms progress over time. This can impact on how you do things, get around and manage personal care.

Further information on mobility and personal care

Speech & Communication

MND can cause speech to become faint, slurred or unclear. It can also affect gesture and facial expression. This means communication can become increasingly difficult over time.

Further information on speech and communication

Eating & Drinking

If MND affects your swallow, you may find it harder to eat and drink. If movement and mobility are affected, mealtimes can take longer and you may lose weight or struggle in social occasions.

Further information on eating and drinking

Emotions, Thinking & Behaviour

Any diagnosis of serious illness brings mixed emotions. Feelings can be unpredictable and intense, which is natural and expected. Thinking and behaviour may also be affected.

  • “People may not want to discuss things immediately, but they can always seek help later.” – Person with MND

Further information on emotions, thinking and behaviour

Relationships & Family

Over time, support will be needed with MND and those close to you are likely to become involved in your care. This can raise questions about how relationships and social networks will change.

Further information on relationships and family

Breathing & Ventilation

Breathing may be affected, but there is a lot of support available. MND does not stop your body processing air, but it can weaken the muscles that help your lungs to inhale and exhale.

Further information on breathing and ventilation


Keep on moving

Learning to maximise your life with MND is something that many of our members are passionate about – and eager to share their own experiences in order to help others.

Tell me more
Meet others at our events
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