Support for children and young people

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

Support and information during the coronavirus outbreak

Coronavirus, also known as COVID-19, has made 2020 a difficult and very different year for everyone. If you are helping to support someone with MND during this time, it may feel particularly challenging. We're here for you.

Government guidance for young carers about coronavirus has been provided for young people under 25. It can help you feel informed and supported if you find yourself in a caring role at this time.

You can also contact our Young Connect helpline with any questions. See the next drop down on this page or contact:

Helpline: 0808 802 6262
Email: youngconnect@mndassociation.org

For guidance about MND and support, contact:

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, you can also contact:

Helpline: 0800 1111
Website: www.childline.org.uk

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.

Urgent support

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.

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

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."

Becoming stronger

"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."

Being you

"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."

We provide information for young people about MND and the support available, including a guide, web app and reading lists. Or contact our Young Connect helpline as explained in the drop down option above. They can answer questions or just chat if you need support.