Support for young carers

There is support available for "young carers" – that’s anyone under 18 who’s giving extra help and support for a family member with MS. 

When you look after someone in the family with MS, it feels good to know you’re making their life easier. But life for a young carer can sometimes be tough. Just always remember: there’s support out there for you.

Am I a young carer?

You’re a ‘young carer’ if you’re under 18 and you help support someone with a disability or health problem, like MS. No one pays you for this. And without your help the person you care for would need help from others. It’s probably your mum or dad who has MS. But it might be another family member. And if you’re aged 18 to you might hear people call you a ‘young adult carer’.

What young carers do. And shouldn’t do

Maybe you started helping gradually as the MS slowly got worse. Or you suddenly needed to help after the MS got worse following a relapse.

What young carers do

You might support someone by:

  • doing things around the home, like cooking, cleaning or shopping
  • helping them get dressed or move around
  • giving emotional support
  • taking care of younger brothers or sisters
  • helping to manage the family budget and finances
  • collecting prescriptions and making sure medication is taken
  • helping them communicate

What young carers shouldn’t have to do

Some things are best done by an adult. This includes:

  • lifting someone. You could them hurt them or without training or special equipment yourself
  • giving someone ‘personal care’

Personal care means things like bathing, washing or shaving someone. It also covers care a nurse would usually give – like giving injections or looking after a wound.

It’s OK to help someone get to the toilet. But if they need your help to have a poo or pee, or to clean up afterwards, these are not things you should have to do.

Dealing with difficult feelings

Knowing you’re making a difference can feel good. But it can be tough sometimes. Here are tips on how to cope with some difficult feelings.

It can help to talk about your worries - about the person you care for, or worries about juggling things at home, or with school or college. You could talk to an adult, like a teacher or school counsellor, or someone your own age. This can be face to face, over the phone or online. It might be hard to share your worries, but it can really help.

If you worry that you might also get MS one day, check out the facts. It can help to know that this isn’t very likely to happen.

Under ‘More support for carers’ you’ll find places where you can talk to someone.

Feeling angry can be a healthy reaction to a difficult situation. But find a way to let your anger out in a healthy way. Get physical. Go for a run or to the gym. Kick or hit a ball. Let off steam through dancing or loud music (without annoying people at home). Punch a pillow. Cry into one if that helps. Writing down how you feel can release the pressure. Or get creative in any way that works for you.

Sometimes the anger can come from the person you care for. They’re probably angry and frustrated with their MS, not you, or because of money worries. Try to remember this and not take it to heart too much.

It’s OK to feel guilt. It’s a normal reaction. Adults can feel this too. You might feel guilt because you don’t have MS when someone in your family does. Or you might feel guilty for having fun and doing things they can’t. But you’re allowed to have a life of your own. Don’t let feelings of guilt stop you. A lot of the caring you do, can be done by people sent by your local council who get paid to do it. It’s important to have a break. And it’s OK to stop being a carer if you want.

It’s understandable if you’re jealous of people who don’t have MS in their family. It’s normal to wish your family didn’t have to deal with MS.

Instead try to think of the good things you have in your life because of MS. It often brings families closer together. It can feel good to know you’re helping someone stay active. It’s great when you see how you’re making life easier for them. You might make new friends through your connection with MS. It can make you a more caring, understanding person.

You might feel you’re the only person dealing with MS or illness in the family. You’re not. There are lots of other young carers out there you could make contact with. Talk to them and they’ll understand what you’re going through.

Perhaps you’d rather not join something with a focus on MS or on being a carer. So try a regular youth group, or special interest or hobby group. Or join a group that teaches you a new skill like swimming or dancing. This can help you break your routine, mix with others and feel part of something.

It’s normal to feel sad at times. It’s understandable when someone close to you has a health problem like MS. But don’t shut yourself off from others. Keep talking to the people close to you. Or speak to a school teacher or counsellor if you feel you can.

When you’re out in public with someone with a disability, other people might make comments or stare. That’s because people often don’t know how to behave. So hold your head up high. Pretend it doesn’t bother you - even if inside it does. Take some breaths and carry on. Remember, disabilities are normal.

Other young carers have found these tips helpful:

  • de-stress with long walks, exercise, the gym or listening to your favourite music
  • keep talking. Share your problems. To stop worries building up, offload them on a regular basis. It’s a powerful way to feel better.
  • write down your thoughts and feelings. Overcome negative experiences by writing about them. It helps make sense of what’s going on, and to see what's important and what’s not. Do this in a diary, or even in a poem or song. Or share your thoughts online. But don’t give out personal information like your phone number or where you live.
  • make sure you have time for school, homework and friends - and time and space for yourself when you want to be on your own. If caring is all you do in your free time, reach out for support. You deserve time for you.
  • don’t feel your own life is on hold. You have the right to go to college, get a job, and have a social life. Wanting this doesn’t mean you’re selfish or a bad person. Bring this up with your support worker if you have one, or during your young carer’s assessment when you have one. Arrangements can be made for other people to help out at home

Getting help from others

You don’t have to look after the person you care for on your own. Help is available. Ask the adults in your family to find somebody, like help from your council. This could be someone from your local council’s social services who’s had the right training. Or it could be a health worker like a district or community nurse. And if you find yourself doing things like lifting someone or giving them personal care, then it’s definitely time for an adult to help out instead of just you. Bring this up with your support worker if you have one. Or mention it during a carer’s assessment.

Young carer's assessment

All carers under 18 can have a young carer’s assessment. In Scotland this is called a Young Carers Statement. This isn’t a test like a school assessment. It’s not a test of how good a job you’re doing. So it’s nothing to worry about.

At your assessment you’ll be asked what kind of caring jobs you do. And how you feel about being a carer. This will be with someone from your local council (or in Northern Ireland, your local Health and Social Care Trust). This could be a social worker or someone from the local young carer service. They’ll then suggest things they can arrange to support you.

This support will come from your local council (or Trust). It could be help to have a break from caring. Or they might send paid carers to take some of the burden off you. They could also put you in touch with support groups for young carers.

You can have an assessment no matter how old you are, or how much or how little caring you do. The adults at home can ask for a young carer’s assessment for you. Or you can ask for one yourself. You can have your assessment with family members present if you want. But you can have it on your own. It might be easier to talk honestly with no other family members around.

For an assessment contact the social services department of your local council (or Trust in Northern Ireland). Your local young carers service also know how you can ask for one. If you’re 18 or older, you’ll have the adult version of the assessment.

The Carers Trust have a booklet that talks you through having an assessment.

Read more about your rights and how the assessment works

We have information about what it’s like to have the assessment for adults.

If you had a carer’s assessment in the past, you can have another one if your situation has changed, or if you need more help. You can have an assessment as many times as you need one. It’s OK to ask for more help if you need it, and to do this before things get too much for you to handle.

Just tell your council (or Trust) that the amount of caring you give has gone up and you’d like a review of your assessment. Or an adult can tell them this for you. They should then arrange for paid carers to come and help out.

What if I want a break from caring?

If you need a break, bring this up during your young carers assessment. If you already have your own social worker or support worker, you can bring this up with them too.

Your council (or Trust) or social worker may be able to arrange time out from caring. They could put you in touch with a young carers group who organise fun things to do. It’s important you get breaks and chances to enjoy yourself with other young people.

While you have a break paid care workers can be sent to your home to carry out the caring jobs you usually do.

What if you don’t want to be a young carer anymore?

Sometimes the individual you’re caring for may not realise they’re asking more of you. Gradually more and more time of your time gets taken up with caring. This can cause anxiety and depression and isolate you from being with other young people.

If you don’t want to be a carer anymore, bring this up during a young carer’s assessment. Then you can get the support you need to make it possible to hand the caring over to other people.

If you’re an older young carer in England thinking about your future, you can ask for a ‘transitions assessment’. This looks at what you want as you get close to 18 and officially become an adult. This could be support for you to go to college or university, or to get a job, or to move out of home and live independently.

Support at school

It helps if school know you’re a carer. The person you look after can tell them, or you can let a teacher or school counsellor know yourself. Your school might have a ‘young carers champion’ to speak to if you need more support.

Once school knows, teachers should be more understanding if the caring you do at home is effecting your schooling. Teachers should put support in place. Also, your local authority’s social care services can arrange help for you and your family. If you have a support worker, they can help arrange this. Or bring it up if you have a carer’s assessment.

MS can make you feel different from your school friends. It can be difficult if they don’t understand MS. But real friends will like you and want to hang around with you. You’re a person in your own right, separate from the person in your family and their MS.

Bullies pick on things that make someone different. If this happens because someone in your family has MS, it’s not your fault. Tell someone in your family, a teacher or another adult you trust.

You can also talk to someone at the National Bullying Helpline on 0300 323 0169. They have useful tips on how to deal with bullying. Try to keep in mind it won’t always be this way. Things will get better eventually. Getting support from adults will help.

There's also SHOUT, a free 24/7 text messaging service for anyone who needs support.

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Benefits you might get

If you’re 16 or older, you might qualify for welfare benefits. The main one is Carer’s Allowance, money to help you look after someone who needs to be cared for. You must be caring for someone for at least 35 hours a week. You can’t be in full time education. But if you’re studying for less than 21 hours a week, you can get Carer’s Allowance (so long as you meet the other rules). If you work, there will be a limit on the amount you can earn and still claim Carer’s Allowance. This will change each year. It may affect the how many hours you can work and still be qualify to get this money.

Find out more about Carer’s Allowance

If you live in Scotland, Carers Allowance is being replaced by Carer Support Payment.

Find out more about the Carer Support Payment

Read more about the financial help you can access

If you need help or advice around benefits, call the MS Helpline on 0808 800 8000 or email [email protected]. Ask for our benefits advisers who’ll tell you what benefits and support are available.

More support for young carers

If you work, the law says you have the right to carer’s leave, time off to help with caring.

In many parts of the country there’ll be a Young Carers Support Service.

Find out if there’s one near you here

The Carers Trust’s also has information and videos on what’s on offer for young carers where you live. This can include local support, someone to talk to, financial help, breaks and activities with other young people. Many of the Carer’s Trust’s local groups offer things for young carers. Call 0300 772 9600 or email [email protected] for what’s near you. Carers UK also run local carers groups where young carers meet.

Find out more about The Children’s Society's advice and support for young carers

If you’re a young carer aged 13 to 18, there’s an anonymous and confidential text service called Sidekick run by Action for Children. Text 07888 868 059.

If you’re 18 or below and you want to talk about anything that you’re worried about, contact Childline on 0800 1111.

Read more information for young carers on the Mix website for under 25s

Young carer support in Scotland

In Scotland a young carers assessment is called a Young Carer Statement. This is like the young carer’s assessment in other parts of the UK. It’s a chat about the caring you do and any help you need. You can say what you want from life, and what’s important to you. This conversation can be with your support worker or another professional, like a teacher.

Find out more about the Young carer statement

If you live in Scotland, there’s the Young Carers Package (for 11 to 18 year olds). It offers things like free cinema tickets, discounted study guides, and other support.

Find out about this package, what else is on offer and check out young carers blogs and videos

You can get support and information for young carers from Young Scot. This includes information about the Young Carer Grant for carers aged 16,17 or 18.

Find out more about this grant

Young carer support in Northern Ireland

If you’re in Northern Ireland, read about young carer’s assessments, local support, and advice about school at your government website.

Young carer support in Wales

In Wales, the Dewis Cymru website has information about your rights and support as a young person.

The Welsh Government also funds a short breaks scheme for carers. It can help you take breaks from caring.