Additional Support for Carers
Often, we find that people looking after a loved one with MND do not see themselves as a carer. They are often a spouse, partner, relative, or friend, and they see their caring as simply ‘being there’ for the person when it is most needed.
We know that caring for someone with MND can be especially challenging; symptoms and care needs can progress quickly or unexpectedly. Carers also tell us that there is no time to stop and consider their own needs.
We try to encourage everyone who is spending time looking after the needs of another person, regardless of how close the relationship, to identify themselves as a carer. You do not need to be receiving payment, or claiming carer’s benefits, to be a carer.
Acknowledging your own needs, and meeting them, will help both you and the person dependent on your care. You will feel better equipped to care if you know your own emotional, psychological and physical health are being looked after too.
We know that extra support can be crucial for you to feel able to take time out. You may find the following information and resources useful. If you have any queries about the information provided below, or anything else related to your role as a carer, please get in touch using the referral form – one of our National Support Advisers will be happy to advise you.
Care Support Plans
If you are an unpaid carer, your local authority are statutorily obliged to offer an Adult Carer Support Plan (ACSP) or a Young Carer Statement (YCS), regardless of how much or how often that care is provided. Having such a plan in place makes it much more likely that your needs and wellbeing are considered when the local authority plan or provide care/support for the person you are caring for.
Getting a support plan in place can also help you to access respite from your caring role, should you feel you need it.
In most cases, your local carer centre should be able to assist you with drawing up an ACSP or YCS, so we recommend you contact them directly if you feel you would benefit from assistance.
Care Information Scotland have a great A-Z directory of carer’s centres where you can find your local organisation.
Our National Support Advisers can help put you in touch with your local carer centre if you are unable to find them using the above web search.
Carer centres
Other than helping get support plans in place, as covered above, carer centres are often a major source of support, in general.
Whilst the specifics of what is offered varies from centre to centre, often you will find:
- one to one guidance from a carer adviser
- counselling
- regular social or recreational groups
- peer support groups
- help to apply for a range of carer grants
Please visit the Care Information Scotland page to locate your nearest centre – or contact us if you need help.
Employment Issues
It is possible that taking time off work to care can bring about questions or concerns about your rights as an employee and the responsibilities of your employer. Sometimes it can feel better to discuss concerns with someone impartial, rather than rely on those within your workplace.
The Advisory, Conciliation and Arbitration Service offer free, confidential advice regarding a range of employment queries.
Their website has a great advice section where you may find the answer to your questions, but if not, you can call their helpline 0300 123 1100 (open Monday to Friday 8am-6pm) to ask about a specific query.
Money and Debt
Changes to household income because of caring are common, and there are times when situations become difficult to manage on your own. If you have financial commitments, or debt, which you can no longer maintain, we can help you get the right advice.
Our National Support Advisers can make a referral for you to the UK’s leading free debt advice charity, Step Change. Step Change counsellors are qualified to assess your individual situation and recommend tailored solutions to help you get back in control of your finances. Please get in touch if you would like us to make a referral to Step Change for you.
Energy
We have partnered with Home Energy Scotland, who offer free advice and support regarding domestic energy. They can advise if you are having difficulty heating your home, whether this be due to inefficient or old equipment, or finances. They can check if you are eligible to access any regional or national support schemes to help with these matters. Home Energy Scotland also offer comprehensive guidance around energy efficiency in the home.
Our National Support Advisers can make a referral to Home Energy Scotland for you, please get in touch if you would like to access their support.
Find out what benefits you’re entitled to
Please fill in this form to let us know you would like to speak to one of our National Support Advisers. Within ten working days, the adviser will be in touch to arrange a convenient time for an appointment.
Alternatively, you could ask your MND clinical nurse specialist to make the referral for you.
Please note: All questions marked with an asterisk (*) must be completed before submitting your application.
