Support for children and young people
There is help available for families affected by MND, including children and young people. Whether or not you help with care, you are not alone.
"Letting things out is so important. Just tell someone if it gets bad and why you're feeling that way. Don't struggle with everything in silence." Young carer
If someone close to you has motor neurone disease (MND), you may worry how things will change. You may live with them or nearby. You may help with a few tasks or you may be their main carer while going to school or work.
"MND has a gradual drip-drip effect, but it's life changing. Things like a stairlift going in, rails and handles, and a seat in the shower...' Young carer
These changes may feel difficult and emotional. You may also take on extra household responsibilities or give increasing amounts of support to the person you know with MND.
You may need help from care workers who can provide support within the home.
This page can help you find links to the support you may need. See also our information for young people for more detail about support and how to get your needs assessed.
"You don't want to ask, but you have to learn." Young carer
For guidance about MND and support, contact:
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, you can also contact:
Helpline: 0800 1111
We offer grants to help young people close to someone with MND. Up to £250 can be awarded to a young person in any one year. You can use the grant in lots of ways. For example, to help pay for:
- a laptop or smartphone
- a day out with your family to build a special memory
- decoration of your room to create a calm environment.
"The thing that helped the most was spending as much time as I could with my dad to build some very special memories with him." Young person affected by MND
A member of your family or a health and social care professional can apply for a grant on your behalf. Or contact our Young Connect helpline as shown in the option above.
Other MND Support Grants are available for people with MND and for adult carers.
Most schools and colleges have teachers or staff who act as contacts for young carers or young people affected by illness in their family. It can be very helpful to find out who this contact is at your school or college, or you may prefer to talk things over with a teacher of your choice. Once they know that you need support, they can discuss your needs and how best to help you.
Teachers and other support professionals may find it useful to visit our page for parents and guardians to find links to resources. Our information can help them understand your needs and how to provide effective support.
The following list gives examples of the organisations and contacts that offer support. 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.
Emergency Services - Tel: 999
For ambulance, police or fire services.
Urgent health advice in England - Tel: 111
For urgent, but non-emergency health advice.
Urgent health advice in Northern Ireland
This online page will help you find out-of-hours medical guidance.
Urgent health advice in Wales - Tel: 0845 46 47
For urgent, but non-emergency health advice.
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.
Here are a few messages from other young people who have experienced MND in their family. You can find more in our information for young people.
Finding a way through
"You need someone to tell you it will be okay in the end. Not that there will be a cure or anything, but that you will find a way to get through the sadness and live your own life. Because you will."
"There are positives, you just have to look for them and appreciate them for what they are. Special moments, new skills, learning how to deal with difficult situations - these are all things you can carry with you in life."
"I can go into survival mode really easily now. You learn to look after yourself and other people."
"I never want to let go of the emotions I've been through, because they made me who I am. And I like who I am."
"I'm stronger now because of everything that happened...and I think it's true for my whole family now."
It's okay to feel down
"I think we all feel a bit lonely and isolated when MND hits our family. It's easy to feel angry and guilty too, but it's not so strange really is it? Let yourself off the hook a bit."
"Someone I trusted told me it was okay to feel angry or show that I was upset. You can read things like that all day long, but it doesn't quite sink in. He gave me permission to show my feelings, which really helped."
"If MND has taught me anything, it is firstly that it is fine to laugh at the things you laughed at before."
"It's hard, but through all of this, you cannot let it stop you making your own choices and getting on with life."