Parents and guardians
If you are living with or affected by motor neurone disease (MND), there may be children or young people in your family.
They may need help to understand the changes happening around them, but it can feel difficult to start these conversations. We offer information and support to help - see the options below.
"We're unsure what to say or do." MND carer and parent
It is natural to want to protect children and young people from distress. Yet, when someone close is diagnosed with motor neurone disease (MND), the changes will become visible.
If children and young people are left to their own imaginations, they may blame themselves or feel isolated.
"I can't remember being told that mum had MND, just feeling confused and that everything was changing." Young person affected by MND
Starting conversations about MND can be difficult, but we provide a range of resources and reading lists to help. See the drop down option for families, carers and children on our page listing information for people with or affected by MND.
Our list of useful organisations and internet sites includes suggestions to help you support children and young people.
At first you may just have questions that need answering. Contact our MND Connect helpline if you need to talk or would like guidance about our services, our regional support or wider services from other organisations.
Over time, you may need more help.
"I feel anxious, inadequate and constantly torn between our daughter and caring for my husband." MND carer and parent
You may find our pages for carers and family members useful, which include information about getting your needs assessed.
Our range of information for people with or affected by MND includes a drop-down option for families, carers and children, providing:
- overviews about the disease
- how to manage difficult conversations
- how to access available support (including care support, relevant benefits and financial support)
- resources designed for children and young people.
See our helpline contact details at the bottom of this page or find out more about MND Connect on their own page. The team can provide support, information, and guidance on our services and wider support. They can also listen if you just need to talk. The helpline also assists health and social care professionals who provide support to families affected by MND.
The team also operate our helpline for young people:
Helpline: 0808 802 6262
"The fact that your helpline can be contacted by young people as well as adults is the best part. You're here for us too." Young carer
For 24-hour emotional support, up to the age of 19, children and young people can also contact:
Helpline: 0800 1111
If you are a teacher, social worker, or a health or social care professional, we are here to help you too. See the drop-down option above if you need to contact our helpline, MND Connect.
When someone is diagnosed with MND, support for the whole family is important - especially where children and young people are involved in care tasks, becoming young carers. Where professionals work together, with permission from the family, it can be of huge benefit.
Understanding and support at school or college is of major importance for children and students who experience MND in their family.
"It's very difficult trying to study for A-levels, keep up with friends, look after my dad and help mum look after him too. I feel a lot of responsibility and think about things that wouldn't even cross my friend's minds." Young carer
We provide information for people with or affected by MND, which includes a drop-down option for families, carers and children.
We also provide the following resource, designed to assist you: Supporting children and young people close to someone with MND
The following list gives examples of the organisations and contacts that offer support for children and young people. This list will help get you started - or contact our Young Connect helpline, as explained in the drop down option above. The helpline team can guide you to our own services and other organisations as needed.
Childline - Tel: 0800 1111
24-hour emotional support, offering confidential live chat.
Hope Support Services - Tel: 01989 566317
Online emotional support for children and young people aged 11 and over facing a family health crisis offering Skype, email, one to one and peer support. Email: firstname.lastname@example.org
Online chat with qualified counsellors.
Emotional wellbeing support for students.
An online guide to life for 16-25 year olds in the UK, offering non-judgemental support and information.
Support for young carers
The Children's Society - Tel: 0300 303 7000
Help for young carers with details about the annual Young Carers Festival and young carers’ groups on the website.
Bereavement support for children and young people
Winston's Wish - Tel: 08452 030405
Support for bereaved children, young people and their families.