Carers Hub

We’re here to help carers find the help and support they’re entitled to.

If you provide unpaid care to someone with Motor Neurone Disease (MND) there are a number of ways you can access support as a carer.

You may not see yourself as a ‘carer’, thinking of yourself as a partner, relative or friend instead; however, it is important for you to see yourself as a carer so you understand your rights and so you are aware of the help that is available.

What are my rights as a carer?

If you are a carer in Scotland, you have certain rights by law. This includes access to local information and support services from your local authority (council).

Carers Assessment

You have a right to ask for a carers assessment from your local authority, which helps determine what your needs are as a carer. This is available to people whether or not they live with the person they care for.

Once your carers assessment has been carried out, your local authority must then offer a support plan to anyone they identify as a carer. They will then create an Adult Carer Support Plan (ACSP) or a Young Carer Statement (YCS) to anyone who accepts this offer.

Your carer support plan will contain information about the nature and extent of the care provided and how this affects your own wellbeing and day-to-day life. Your carer support plan will also include the extent to which you are willing or able to provide care, emergency and future care planning, and what ‘personal outcomes’ matter to you in order to help you carry out your responsibilities.

Your ACSP or YCS will also detail support available to you if you live in a different local authority area from the person you are caring for, whether support should be provided to give you a break from caring, any support that is available to you locally, and the circumstances under which your carer support plan is to be reviewed.

If you are a young carer (under the age of 18, or over 18 but still attending school) a carer support plan may also be used by the local authority to determine whether they believe it is appropriate for you, as a child or young person, to be a carer for the person you care for.

If there are changes that cause your care situation to change, you have the right to ask for a review to your carer support plan at any time.

Respite

Caring for someone with MND can be emotionally and physically demanding. That’s why taking a break can be so invaluable to carers. After all, if you don’t take care of yourself, how can you expect to take care of someone else?

A break could involve allowing yourself a few hours to get out of the house to pursue hobbies, catching up with friends, or it could be taking a few days away for time to yourself (when we are allowed to travel again).

If you need a break from caring, this will be identified through your carers assessment (as above). If your local authority determines that you are in need of a break, you should not be charged for this.

To find out if your local authority covers the cost of breaks for carers, contact your council’s social care department.

You may also be able to access a Time Out Grant from MND Scotland, which is open to carers as well as people with MND.

How can MND Scotland support me as a carer?

We recognise that supporting carers is just as important as supporting people living with MND. That’s why we offer a range of services which provide physical, financial and emotional support for carers.

One-to-one support 

If you are caring for someone who has MND, we can help ease the pressure you may be under during these uncertain times. You can call us if you need:

  • A friendly voice or a shoulder to lean on
  • Help arranging practical support, such as shopping or collecting prescriptions
  • Advice on available or currently restricted services
  • Information on support for carers in your area 
  • Anything else at all

Just call us on 0141 332 3903 during office hours or email info@mndscotland.org.uk.

Video Support Groups

We host a weekly video support group for people with MND and their carers, helping families stay connected. To find out more visit our webpage here

Benefits Advice

If you care for someone with MND for 35 hours a week or more, it is important for you to know that you may be entitled to access Carers Allowance.

To learn more about Carers Allowance, and the other benefits that you could apply for, visit the Benefits Advice page on our website or get in touch with us directly.

Grants

We provide Time Out Grants to fund breaks away for carers and people with MND. A break away is an opportunity for you, and the person you care for, to get away from each of your usual routines.

Alternatively, the person you care for might agree that you should take some time out alone, to take a break from caring and relax.

You can find out more by visiting our Grants webpage.

Counselling

Having a loved one receive an MND diagnosis can be extremely overwhelming and this can be even more difficult as you see their health deteriorate.

Our counselling service is free and confidential and allows carers to share their thoughts and feelings with somebody outside of your family or friends. At the moment we are able to offer counselling sessions by telephone or video call. 

If the person you care for is also receiving counselling, we’ll make sure you are assigned a different counsellor, to give you extra peace of mind that your privacy is being respected.

You can find out more about counselling on the Counselling Service webpage. If you need help urgently you can call the Samaritans on 116 123.

Advocacy

As a carer, you may find that you have naturally become an advocate for the person you care for, stepping in to contact companies to resolve disputes, contacting local authorities to secure faster access to statutory services, or to resolve employment issues for example.

Our Advocacy service is here to provide you, and the person you care for, peace-of-mind by taking on these fights with you, or on your behalf.

Find out more and apply on our Advocacy webpage.

 

Other Carers Organisations across Scotland which can offer help and advice can be found here.