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.

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. (See below for details)

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.

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.

Counselling sessions can be organised on the telephone around your schedule and we are also working to re-introduce face-to-face counselling across the country.

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.

Complementary Therapy

Caring for someone with MND can be physically exhausting. Carers often find themselves taking on manual handling tasks and can also naturally carry built-up stress and muscle tension.

That’s why we offer a range of free in-home massage treatments for family members and carers who look after someone with MND. The massage treatments aren't medical, but many carers find that they help reduce stress and sooth aches and pains.

Complementary Therapy sessions are also available to the person with MND.

You can find out more on our Complementary Therapy webpage.

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.

Carers Alert Thermometer (CAT)

MND Scotland is currently running a pilot project across Scotland where MND carers are paired up with trained volunteers to carry out a Carers Alert Thermometer (CAT) assessment.

The CAT is an 11-question alert tool, devised by Edge Hill University, which allows us to see how you are getting on and to ensure that your needs as a carer are being met.

If you are struggling, or you feel you need additional help, we can then ask your local authority to reassess your care needs to ensure you are receiving the right statutory support. We can also refer you directly to our services for carers, such as counselling, grants to take a break from caring, complementary therapies and benefits advice.

You will also be given the opportunity to take part in a telephone call with researchers at Edge Hill University, who developed the CAT, to gather your opinions on the assessment. If you do not wish to speak to researchers, you do not have to do this.

If you would like to find out more, or request a CAT visit, please contact us at info@mndscotland.org.uk or call us during office hours on 0141 332 3903.

MND Scotland is the leading charity in Scotland providing care and support to people affected by Motor Neurone Disease (MND), as well as funding vital research into finding a cure.