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
How do I explain MND to children and young people?
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.
See also our web pages for young people aged 11 to 18 and for children aged 4 to 10 (the hub for children aged 4 to 10 is under development for launch in 2019).
Our list of useful organisations and internet sites includes suggestions to help you support children and young people.
How do we get support as a family?
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.
Contacting our helpline - MND Connect
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
Email: youngconnect@mndassociation.org
"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
Website: www.childline.org.uk
How do I provide support if I'm a professional?
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
Useful organisations and contacts
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.
Emotional support
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: help@hopesupportservices.org.uk
Kooth
Online chat with qualified counsellors.
Student Minds
Emotional wellbeing support for students.
Young Minds - Tel: 0808 802 5544
Support for the emotional wellbeing and mental health of children and young people. Mon- Fri 9.30am – 4pm Email: ymenquiries@youngminds.org.uk
The Mix
An online guide to life for 16-25 year olds in the UK, offering non-judgemental support and information.
Support for young carers
Carers Trust
Support for carers and young carers. Email: support@carers.org
Chicks - Tel: 01822 811020
Free respite breaks for disadvantaged children, including young carers, from all over the UK. Email: info@chicks.org.uk
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.
Paul's Fund - Tel: 01271 891076 or 0779 398 0760
Grants for children and young carers to have time away at Paul’s Place, in Georgeham, North Devon. Email: pauls-place@pauls-fund.co.uk
Bereavement support for children and young people
Winston's Wish - Tel: 08452 030405
Support for bereaved children, young people and their families.
Child Bereavement UK - Tel: 08000 288840
Support to help families rebuild their lives when someone close to them dies. Email: support@childbereavementuk.org
Hope Again - Tel: 08444 779400
Support, advice and information for children, young people and adults when someone close to them dies. Email: helpline@cruse.org.uk
Grief Encounter - Tel: 02083 718455
Bereavement support for children and young people. Email: support@griefencounter.org.uk and ecounselling@griefencounter.org.uk