Being a carer
We know that life can often be extremely challenging and complicated when you’re caring for someone living with motor neuron disease (MND).
To help you provide high-quality care and look after yourself, this page covers the support you’re legally entitled to, organisations that can help you and MND Scotland’s advice for carers.
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Am I a carer?
You may not see yourself as a carer if you’re automatically giving physical and emotional support to a loved one diagnosed with MND. But anyone who provides unpaid care and support to a person with MND should identify themselves as a carer. Using this label is especially important when you start to explore your rights and the support that carers are legally entitled to.
Our advice for carers
Caring for someone with MND can be overwhelming. You may experience a range of difficult emotions and feel isolated and lonely.
These feelings may be something you struggle to talk to your family and friends about. But the good news is you can reach out and speak to other people who understand what you’re going through.
You can call or email MND Scotland and simply chat through how you’re feeling and what you need help with.
You can also join our online peer support group or attend a local carers support group. Places where you can talk openly with other people having similar experiences.
Or you can speak to your MND clinical nurse specialist or another member of your care team. They can help you with a wide range of issues and connect you with the support you need.
As a carer, it’s important to look after yourself. This is to prevent you from burning out and becoming ill yourself, either physically or mentally.
One of the ways you can do this is by seeking extra support to help you in your day-to-day caring role. You can do this by asking your local council to carry out a carer’s assessment. They may then arrange to provide you with practical help to allow you to care more effectively and reduce your stress.
You can also find our about MND Scotland’s grants to help you take time out, switch off and relax. And you may find our Counselling Service helpful if you’re struggling with difficult feelings.
On top of this, local carers centres and services may be able to provide you with a range of support that gives you a boost. This includes complementary therapies, free counselling, respite care, short breaks, walking groups and other leisure activities.
If you care for someone with MND, you may want to consider creating an emergency plan. This is a written document that lets people know what needs to be done to support the person you care for in an emergency. Download our emergency plan template (pdf) here.
What help am I legally entitled to?
As a carer, your needs should be assessed by a health or social care professional from your local council. Alternatively, an employee from an organisation that supports carers may assess you instead.
After your assessment is completed, an Adult Carer Support Plan (ACSP) will be created that outlines the support you’ll receive from your local council. This may include respite care to give you a break from your caring role.
If you’re a young carer aged 18 or under, a Young Carer Statement (YCS) will be created that highlights your personal goals and any support you require.
To find out more about an ACSP or YCS and how to request one, please speak to your MND clinical nurse specialist, MND Scotland or your local council directly.
You can ask to be assessed at any time. And it’s always a good idea to ask for an assessment if your needs change or you feel like you need more support.
If you’re a carer and have worked for the same employer for 26 weeks, you have the right to request flexible working.
You also have the right to take a ‘reasonable’ amount of time off work to deal with an emergency or an unforeseen matter involving someone you’re caring for.
It’s also worth reviewing your contract of employment to check if you have any contractual rights on top of your statutory rights.
See Carers UK’s website for more information.
As a carer living in Scotland, you may be entitled to the Carer’s Allowance benefit, which is paid every week, and the Carer’s Allowance Supplement, which is paid twice a year.
To find out if you’re eligible, we recommend you use our free and confidential Welfare and Benefits Advice Service.
You can also find further information about these benefits at mygov.scot.
If the person you care for is leaving hospital, your local health board has a duty to involve you in its discharge planning.
This helps to ensure the person you’re caring for receives the right support when they leave hospital and return home.
For more information about your rights, please see Carers UK’s Coming out of hospital information.
“When I first reached out to MND Scotland for counselling, I didn’t know what to expect, it was quite a journey. My therapist Sandra was a huge help to me over the last few months and I’m not sure how I would have got through this period without her help. I’m not sure how much longer my mum will be with us, but now I feel much better prepared for what’s coming.”
How can MND Scotland help me?
MND Scotland offers a wide range of support to help carers take care of themselves and the person they’re caring for. This help includes:
Counselling for carers
Caring for a person living with motor neuron disease can be extremely hard, we’re here to help.
Bereavement support
If the person you care for dies, we can offer you specialist help through our Counselling Service.
Grants
Carers and people living with MND can access our grants to help with the financial burden of a diagnosis.
Advocacy
Our advocacy team are ready to listen to your concerns and help solve any issues you’re facing.
Who else can help me?
Carers organisations
There are many local and national carers organisations that can support you in your caring role and make sure you’re taking care of yourself.
To find details of your nearest carers centre or service, please contact MND Scotland on 0141 332 3903 or info@mndscotland.org.uk.
The main national organisations in Scotland that support carers are:
Your MND clinical nurse specialist
Always remember your MND clinical nurse specialist is there to support you as a carer as well as the person you’re caring for. So please don’t hesitate to ask them a question or tell them about something you need help with.
They may provide you with direct support themselves or connect you with other professionals or organisations that can help you.