If you have MND, Kennedy's disease or provide support as a carer, you may be facing unexpected costs. You may qualify for a range of benefits or other types of financial support.
We are currently facing a steep rise in the cost of living which many people are finding challenging and worrying. Price increases on food, goods, fuel and energy have made it harder to maintain quality of life.
Financial support can be of great help. We have included ways to help manage cost of living challenges below.
If you have not claimed benefits before, you may find it daunting. However, it is your right to do so and it could make a significant difference to your financial position and peace of mind. If employed, you may also be thinking about options at work.
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“I was in work when diagnosed and found it difficult to know what benefits I was entitled to.”Person with MND
How can I save on cost of living?
With rising costs for food, fuel, heating, energy and general goods, we are all facing increasing financial challenges. Inflation is high and this can make it difficult to keep your standard of living the same.
Various links are shown below to help you find websites or services that specialise in money saving or support.
How can I spend less money?
Use the following links to explore ways of managing your finances and finding less costly services or goods.
Citizens Advice provides guidance on debt and a useful checklist on ways to reduce living costs.
Money Saving Expert offers suggestions on ways to save money, including current deals across a wide range of services and providers.
Contact your bank or building society to discuss your finances, as they may be able to advise and offer support. They often give money saving tips on their websites.
If you are finding it difficult to afford food, contact your nearest foodbank. Your local authority should be able to let you know where these are in your region. You can also use the find a foodbank facility for the Trussell Trust foodbanks.
Is there anything I can claim to increase my income?
There are various benefits and other financial support available. See our Benefits Advice Service to help you work out where you may qualify. Do claim if you are entitled, as this can make a real difference to your income. Find government information as follows:
For England: see their support for cost of living at www.gov.uk
For Northern Ireland: see their cost of living page at www.nidirect.gov.uk
For Wales: search for cost of living at https://gov.wales
How can my energy provider help with heating and energy costs?
Check your energy provider website, as they may have recommendations or deals available. If you are unable to pay a bill, contact them for guidance. You may also find the Ofgem website helpful - Ofgem is Great Britain's independent energy regulator and they have a Priority Services Register to help vulnerable people can get extra help when needed.
If you have MND, register with your energy provider as a vulnerable person and you will get forewarning of any planned power cuts. This can help you feel more prepared if you need to switch to battery power for assisted ventilation or automated tube feeding. Your provider may also offer further advice and support. Find more advice on how to prepare for power cuts from the British Pharmaceutical Nutrition Group.
The Which organisation offer 10 ways to save on energy bills with guidance.
If you’re living with MND or caring for someone who is, and worried about energy bills, you can call Marie Curie’s Support Line and ask one of their dedicated Energy Support Officers for guidance. They can give information on things like supplier-specific support, grants, and energy efficiency updates. Tel: 0800 090 2309 or visit mariecurie.org.uk/energy for more information and opening times.
How can the Government help with heating and energy costs?
The UK Government's Help for Households website provides lots of information about financial support including the Cost of Living payment and help with household bills.
For eligible households on low income, the Warm Home Discount Scheme will provide a one-off discount for electricity bills for winter 2023.
Find government information at:
For England: search for heating or for winter fuel payment at www.gov.uk
For Northern Ireland: search for winter fuel payment at www.nidirect.gov.uk
For Wales: search for Wales fuel support scheme at https://gov.wales
Warm hubs and local support
Regional schemes can help too. For example, warm hubs are heated spaces in community buildings, where local residents can visit. Find out more, including a map of the hubs, at: https://warmspaces.org They provide a safe, warm and friendly environment to enjoy refreshments and social activity. Information and advice are often available, along with the chance to share tips with other visitors. Your local authority, council or health and social care trust can help you identify these hubs and other schemes:
For England: see www.gov.uk/find-local-council
For Northern Ireland: see www.nidirect.gov.uk/contacts/health-and-social-care-trusts
For Wales: search for find local council at https://gov.wales
How can the MND Association help me?
If you are living with or affected by MND, or Kennedy's disease, we offer financial support grants to help towards:
- emergency funding for living costs
- funding equipment and services if assessed as a need for someone with MND
- funding for children and young people living with someone with MND
- non-paid carers supporting someone living with MND
- improving quality of life for someone living with MND.
Our grants do not replace statutory funding that should be available, but we can assist with obtaining statutory funding or funding from other charitable organisations.
If you need any help or guidance about our support, contact our MND Connect helpline.
Find out more in our support and information hub about our services, including equipment loans and local help from our branches and groups.
What else is the MND Association doing to help?
We consistently campaign on your behalf on a wide range of concerns. Find out more and ways to get involved through our campaigning hub.
Our benefits advice service
If you are living with MND or a carer, and you need guidance about benefits, contact our Benefits Advice Service. Our team of qualified advisers can provide support by phone and email in England, Wales and Northern Ireland. Web chat is also available in England and Wales. A telephone interpreter can be arranged at a set time if a language other than English is required.
The service can help you identify available benefits and the best way of claiming them. You can also get help for complex benefits issues and appeals. A home visit to help with the completion of forms may be possible, depending on your circumstances and where you live.
Our other services
See Our services to find out how we can help with financial support grants and other support. Or contact our MND Connect helpline for guidance.
Our information and other resources
Benefits Advice Service we're here to answer your queries (see section above). The following key resources may also help:
10A – Benefits and entitlements
Our information sheet about different types of benefits
Online government information about benefits, for England and Wales
Online government information about benefits, for Northern Ireland
The online site for Citizens Advice, giving independent guidance, including benefits advice
Help with accessing welfare benefits, including a benefits calculator and grants finder
Help about your rights, if you need to challenge a decision on a claim.
We provide further information on financial support:
- 10B – What is social care?
Exploring how social care works, including being assessed for your needs and who pays for any agreed care services.
- 10C – Disabled Facilities Grants and home accessibility
How to claim for a grant to adapt your home if you have care or mobility needs.
- 10D – NHS Continuing Healthcare
How to be assessed for nursing care and support funding by the NHS, where health needs become severe and difficult to manage.
- 10E – Work and MND
Options for continuing or leaving employment, if you have MND or you are a carer.
- 10F - Personal health budgets
If you qualify, how the NHS in England may provide some of your healthcare funding for you to choose certain health services yourself, such as physiotherapy.
- 10G – Support for families with children
The support you may be entitled to if you have a family with children affected by MND.
You may also find the following helpful:
Health and social care trusts and housing providers
Check with your local contacts for these organisations, as they may be able to provide guidance about benefits where appropriate.
Community organisations and faith groups
Some organisations provide assistance to those with specific cultural needs. Check with your local community or faith leaders to see what might be available.
What do all the words mean? (Glossary)
Benefits systems in the UK are complex. They use many terms that may be new to you when you first start claiming. The following may help:
The amount of benefit that most people are awarded has a top limit, known as the benefit cap. Find out if it affects you with the benefit cap calculator at: www.gov.uk/benefit-cap
Change in circumstances:
If you receive any benefits, you are legally obliged to inform the Department for Work and Pensions (DWP) if your financial situation, home circumstances or condition changes. For example, if you need a lengthy stay in hospital, this may affect certain benefits. In Northern Ireland, you have to inform the Department for Communities.
Some benefits are means tested, some are not. This is where your income and capital (savings and investments) may be taken into account to work out how much you may receive as part of a claim (or how much you may need to contribute – for example, towards adult social care services). It is an offence to deliberately transfer or conceal capital or income to qualify for benefits.
Northern Ireland have introduced supplementary payments to help those who may be worse off, following changes to certain benefits, including the changeover from Disability Living Allowance (DLA) to Personal Independence Payment (PIP). If you live in Northern Ireland, ask your local health and social care trust for more detail.
Some benefit awards may be regarded as taxable, which means you will pay income tax on the amount. You can find a list of taxable and non-taxable benefits by searching for income tax at: www.gov.uk.
You may come across medical and research terms when reading about MND - see our page on What do all the words and initials mean?
If you have MND and wish to work or continue working as long as possible, adjustments to your work environment may be needed. Over time, this could include physical support and equipment. The Access to Work scheme may be able to assist with a grant to help fund this. You also have the right to ask your employer to consider flexible working hours.
We provide an information sheet to help you and your carers: 10E – Work and MND.
When you feel ready, it can help to let everyone at work know about your diagnosis, as the symptoms will become noticeable. If they understand what is happening, they may be able to adapt their work practice around your needs.
In time, you may decide to think about your employment options and whether to leave work. These decisions can impact on social networks and finances. See the other sections on this page about benefits and financial support.
Disability benefits are provided to help you meet the extra costs of being disabled, regardless of whether you still work or not.
As care needs with MND increase over time, carers sometimes need to adjust their working life too. We provide more help in our carer’s guide Caring and MND: support for you.
You can claim certain benefits if you are disabled, have a serious health condition (such as MND) or provide support as a carer.
Disability benefits are provided to help you meet the extra costs of being disabled, regardless of whether you still work or not.
Find details on each benefit, whether you may qualify and how to claim, in information sheet 10A – Benefits and entitlements.
The five main disability benefits are:
Personal Independence Payment (PIP)
An amount of money to help with the extra costs of long-term illness or disability. It is not means tested and is tax free. You must be aged 16 or over, but under state pension age when you claim. PIP is split into two components, for daily living and mobility. You may qualify for one or both. PIP is replacing existing Disability Living Allowance (DLA), which worked in a very similar way. All new claims are now made for PIP. Existing DLA awards are being replaced by PIP.
The Department for Work and Pensions have created a series of short videos about claiming PIP. You can see the videos here.
Attendance Allowance (AA)
An amount of money to help with the extra costs of long-term illness or disability when you are older. It is not means tested and is tax free. You must have reached state pension age to claim. It does not provide a mobility component. If you are already getting PIP or DLA when you reach state pension age, these payments will continue, including the mobility component. In this case, you do not have to claim Attendance Allowance. You cannot get Attendance Allowance if you live permanently in hospital or a care home funded by a local authority.
If you support someone who receives PIP, DLA or AA, Carer’s Allowance is an amount of money you can claim if you have a low income. You must be 16 or over and spend at least 35 hours a week caring for them. You may not qualify for Carer’s Allowance if you receive certain other benefits, such as a state pension. However, it is still worth applying as your other benefits may increase to acknowledge your caring role.
Employment and Support Allowance (ESA)
You can claim ESA if you are unable to work because of ill-health or disability and you are not receiving Statutory Sick Pay (see below). If you have enough National Insurance (NI) contributions you can claim contributory ESA, which is not means tested but is taxable (you may hear this be called 'new style' ESA). If you do not have enough NI contributions, then you may be entitled to income related ESA, which is means tested. If you have a low income and claim contributory ESA, you may be able to claim income related ESA as a top-up payment. You will be asked to complete a questionnaire about how your illness affects you. This may mean attending a medical assessment, unless you qualify for fast tracking when the assessment is not usually required. New claims for income related ESA are now being paid as part of Universal Credit.
Statutory Sick Pay (SSP)
If you are employed and unable to work due to sickness, you can receive Statutory Sick Pay (SSP) after 4 days. This will depend on how much you earn and whether you have paid enough National Insurance contributions. It is payable for up to 28 weeks, usually through your employer who may also have a company sick pay scheme. Ask your employer for details. If you only receive SSP, without additional sick pay from your employer, you may be able to claim a top up benefit, but this is means tested. If SSP has ended or you are self-employed, you may be able to claim Employment Support Allowance (ESA) (see above).
Other main benefits in England and Wales
If you need financial support due to a low income, this is now offered through a single benefit called Universal Credit. If you qualify, this is available across the UK.
Find out more about whether you qualify, how to claim and other additional benefits in our information sheet 10A – Benefits and entitlements.
Making a claim
Claims can take time to process and, if you qualify, you may have to wait to receive payment. A successful claim is usually awarded from the date the claim was received by the benefit provider. This means you should always submit claims as soon as possible, as they can only be backdated in exceptional circumstances.
Who deals with claims in England and Wales?
In England and Wales, your local authority deals with claims relating to rent and council tax. The Department for Work and Pensions (DWP) deals with most other claims, including disability benefits.
Who deals with claims in Northern Ireland?
In Northern Ireland, the Housing Executive deals with claims relating to rent and rates. Most other claims, including disability benefits, are dealt with by Jobs and Benefits, and Social Security offices.
How are claims processed?
Most benefits have their own contact details and claims are processed in a variety of ways. Some can be done online or begin with a telephone call. There are ways of seeking help if you find this difficult. Our Benefits Advice Service can provide guidance if you need help to complete a claim form.
Keep a file of all communications during your claim, including a copy of the claim form if you can (this may help if there are any problems or you need to appeal).
Can I be fast tracked to speed up the claim process?
With a life-shortening illness, you may be able to fast track claims for certain benefits, such as Personal Independence Payment and Attendance Allowance. You can find out more about benefits and fast tracking in section 3 of information sheet 10A – Benefits and entitlements.
What details will I need to provide?
As well as your address and personal details, you may be asked for:
- your National Insurance number
- your bank account details (you should only be asked for these as part of an official assessment or application)
- details about your rent or mortgage
- details of your past or present employer
- details of other income and savings (refer to payslips and bank statements).
With disability benefits, you may need to explain how your condition affects your daily living. Give as much detail as you can on the claim form. Try not to make light of your difficulties and explain if your symptoms are changing rapidly.
Example of how to answer the questions:
‘I find it difficult to get dressed.’
‘I cannot do up buttons or zips any more. Even with assistance it can take over an hour to get dressed and I find it very tiring.’
Making an appeal
If you are unhappy about a decision regarding a benefit or entitlement, you can ask the authority who made the decision to reconsider your claim. Provide additional evidence if possible, such as a doctor’s letter.
You have 28 days to do this from the date shown on the decision letter, and you should receive a response within six weeks (unless the service is under pressure). If you are still unsatisfied, you can make a formal appeal, but this can take time.
Our Benefits Advice Service can provide guidance.
You can also contact the helpline relating to the benefit you wish to appeal. A local independent advice centre may be able to advise (where a benefit service is offered), such as your local authority, local carer’s organisation or Citizens Advice.
This video is by the Department for Work and Pensions (DWP), who are responsible for benefits for people in England and Wales. The video explains Personal Independence Payment, one of the main disability benefits in the UK. You can find more videos on PIP by the DWP on their YouTube channel.
This video is by the Department for Work and Pensions (DWP). The video explains Support for Mortgage Interest (SMI), a loan from the DWP to help towards interest payments on a mortgage or loan for certain repairs or home improvements.
SMI is not mentioned in the drop downs above, but we do provide more detail in Information sheet 10A - Benefits and entitlements.
Page last updated: 25 October 2023
Next review: January 2025