If you’re at least 16 and under State Pension Age:
Personal Independence Payment (PIP)
The Special Rules allow people nearing the end of life to:
- get faster, easier access to certain benefits
- get higher payments for certain benefits
- avoid a medical assessment
A claim applied under the special rules will be awarded for three years – the claim will be reviewed after this period. You can still apply for PIP if you're expected to live longer than 12 months, but you will not be able to apply under the special rules.
You can also apply for special rules for other benefits
https://www.mariecurie.org.uk/help/support/benefits-entitlements/benefits-social-care-system/special-rules
Daily living component for help with everyday activities:
Standard rate: £72.65 a week
Enhanced rate: £108.55 a week
Mobility component for help with getting around:
Standard rate: £28.70 a week
Enhanced rate: £75.75 a week
Adult Disability Payment
Replacing PIP in Scotland; helps with extra living costs if you have a disability or a long-term health condition that affects your everyday life. If you move from Scotland to England or Wales, and currently receiving ADP, you must make a new claim for PIP instead.
Adult Disability Payment - mygov.scot
Employment and Support Allowance
For those who are 16 years and older, under State Pension age, with disability or illness that makes it difficult or impossible to work.
You also need to have both :
- worked as an employee or have been self-employed
- paid enough National Insurance contributions, usually in the last 2 to 3 years - National Insurance credits also count.
ESA gives you:
- Money to help with living costs if you’re unable to work
- support to get back into work if you’re able to.
How much you get will depend on what stage your application is at, as well as things like your age and whether you’re able to get back into work. You could get Universal Credit at the same time or instead of New Style ESA. You cannot get New Style ESA if you claim Jobseeker’s Allowance (JSA) or Statutory Sick Pay. You can apply for New Style ESA up to 3 months before your SSP ends. You’ll start getting New Style ESA as soon as your SSP ends.
ESA in Northern Ireland - https://www.nidirect.gov.uk/articles/employment-and-support-allowance
Universal Credit
A payment to help with your living costs. You may get it if you’re on a low income, out of work or cannot work.
Universal Credit in NI - Universal Credit | nidirect
If you receive Personal Independence Payment (PIP), Disability Living Allowance (DLA), or Attendance Allowance, these will not affect the amount of Universal Credit you get
To claim you must:
- live in the UK
- be aged 18 or over (there are some exceptions if you’re 16 to 17)
- be under State Pension age
- have £16,000 or less in money, savings and investments.
How much you’ll get | Monthly standard allowance |
If you’re single and under 25 | £311.68 |
If you’re single and 25 or over | £393.45 |
If you live with your partner and you’re both under 25 | £489.23 (for you both) |
If you live with your partner and either of you are 25 or over | £617.60 (for you both) |
If you live in Northern Ireland, go to https://www.nidirect.gov.uk/campaigns/universal-credit
5. Blue Badge
It helps with people with disabilities or health conditions park closer to their destination – either as a driver or a passenger. Applying for Blue Badge in Northern Ireland - https://www.nidirect.gov.uk/services/apply-or-renew-blue-badge-online
If you’re above State Pension Age:
Attendance Allowance – If you are your State Pension age or over and have a disability severe enough that you need someone to look after you, you are eligible to get benefit. You are not being means-tested prior this allowance provision. You could get £72.65 or £108.55 a week to help with personal support.
If you have a carer, claiming Attendance Allowance may help them qualify for benefits such as Carer’s Allowance. You and/or your carer may be entitled to other extra help too.
You may wish to claim benefits for someone else if they need help to apply, or do not wish to know their prognosis and their illness is terminal. This only applies for PIP, AA and DLA, on behalf of someone else. They should know that you're claiming and need to use their personal details, but you do not need to tell them that the claim is under 'special rules'.
If you live in Aberdeen City, Argyll and Bute, Highland, Orkney Islands, Shetland Islands, You will need to apply for Pension Age Disability Payment instead of Attendance Allowance https://www.mygov.scot/pension-age-disability-payment. If you live in another part of Scotland, apply for Attendance Allowance.
There’s a different way to do it in Northern Ireland https://www.nidirect.gov.uk/articles/attendance-allowance.
If you are caring for someone:
1. Carer’s Allowance - You could get £81.90 a week a week if you care for someone at least 35 hours a week and they get certain benefits.
Carer's Allowance Supplement is an extra payment for people in Scotland who get Carer Support Payment (equivalent of Carer’s Allowance in England) or Carer's Allowance on two dates each year. This cannot be paid to carers who do not receive Carer's Allowance or Carer Support Payment but instead have an “underlying entitlement”.
An underlying entitlement is where you are not being paid Carer's Allowance or Carer Support Payment because another benefit is paid at a higher rate.
2. Carer’s Credit - You could get Carer’s Credit if you’re caring for someone for at least 20 hours a week. Carer’s Credit is a National Insurance credit that helps with gaps in your National Insurance record.
3. Carer Premium and Carer Addition - The Carer Premium and Carer Addition are the same thing. The Carer Premium is an extra amount added to certain benefits if you're caring for someone. It's called the Carer Addition when it's added to Pension Credit.The Carer Premium and Carer Addition are worth £45.60 a week (2024/25).
4. Winter Fuel Payment - a tax-free amount paid once a year, and how much you get depends on your circumstances. You must be born before 23 September 1958 and be receiving a qualifying benefit to get it. You could get either £200 or £300 to help you pay your heating bills for winter.
5. Cold Weather Payment - tax-free £25 payment for each seven days for when the weather drops below a certain temperature. You usually need to be claiming certain benefits to get it. This is not available in Scotland, where they have the Winter Heating Payment instead.
6. Winter Heating Payment - annual payment replacing Cold Weather Payment in Scotland. A tax-free amount (£58.75) paid once a year, and it does not depend on the temperature. You usually need to be claiming certain benefits to get it.
7. Warm Home Discount - a government-backed scheme where some energy suppliers give you a one-off (£150) discount on your energy bill (the money is not paid to you). You usually need to be claiming certain benefits to get it.
Other possible financial support options:
1. CJD Support Network Care Grants
The CJD Support Network is an independent charity who offer Caring Grants of up to £500 to provide support where there is a financial need that cannot be otherwise covered by statutory funding. For more information, please contact the CJD Support Network (0800 774 7317, support@cjdsupport.co.uk) or visit www.cjdsupport.co.uk/care-grants
2. CJD Care Fund
The National CJD Care Fund is an allocated funding accessible to those with a confirmed diagnosis of CJD or associated prion disease. Awards are given to support timely access to specialist equipment and care interventions, given the ongoing or pending funding application from local authority or NHS. Please speak with your nurse or contact the care fund team to discuss qualifying criteria.
Local council and government grants
Holiday Grants: The 3H Foundation Grants: offer holiday grants for people with a disability and holiday grants for carers (respite breaks). (https://www.the3hfoundation.org.uk/)
The Respite Association: provide free breaks for carers. (https://respiteassociation.org/)
The Ogilvie Charities: provides funding for holidays for carers. (https://www.ogilviecharities.org.uk/)
National Prion Clinic
Box 98
National Hospital of Neurology and Neurosurgery Queen Square
London WC1N 3BG
MRC Prion Unit at UCL
Institute of Prion Diseases
The Courtauld Building
33 Cleveland Street
London W1W 7FF
Helpline: 020 7679 5142 / 020 7679 5036
uclh.prion.help@nhs.net
uclh.prionadmin@nhs.net
The National CJD Nursing Service
Department of Clinical Neuroscience - RHCYP
Level 2 Clinical Offices
50 Little France Crescent
Edinburgh
EH16 4TJ
0131 312 0193
loth.cjdcarefund@nhs.scot
*The following information is extracted from Gov.uk and Marie Curie website, dated from April 2024. A review should take place every 6-12 months as a minimum standard to ensure our guidance posted follows the most up to date practice. Kindly notify us through our clinic helpline should you have any questions about this.
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