Severe ME Awareness Day 2025 – Carers

Information for Carers
This year we decided to focus on carers for our severe ME Awareness week. We have many carers who form part of our membership. Often they are parents of a severely affected member, but we also have spouses, sons and daughters who care for family member with severe ME. We know many of you have been providing a high level of care for your loved one many years with some of you providing around the clock care. We know within your role as the carer of a loved one you often wear many hats; providing personal care, providing emotional support, advocating for and working with professionals involved in the person’s life to name but a few. 25% ME Group recognises the value and importance of unpaid carers in supporting our members who have severe and very severe ME.
Due to the very specific needs of people with severe and very severe ME, such as the sensitivity to stimuli and the post exertional malaise some of you are loath to have support from home care workers. Some of you juggle paid employment with your caring role; leaving food prepared etc before you leave for work perhaps rushing back to check on the person in your lunchtime. For some people trying to provide care for someone with severe ME and undertake employment can be a tall order or simply not sustainable. The household may lose one or two incomes; the income of the unpaid carer in addition to that of person with severe ME. In addition, household costs often rise – for example the cost of utilities such as heating and water can go up drastically. Less income can negatively impact the whole family and not just financially. A lack of disposable income can leave children unable to enjoy the extra curricular activities etc.
There are forums where unpaid carers can talk with other unpaid carers and share experiences. Local authorities usually have a carers’ group which anyone providing unpaid care can attend. At 25% ME Group carers of people with severe ME can add their details when the person with severe ME joins and be added the contact list to find other carers in similar situations. Carers have said this has helped them feel lees alone in their caring role. It can also be a way to share tips. Carers can also be on the 25% ME Group closed Facebook page.
 
Definition of an Unpaid Carer
A carer is defined as anyone who provides care, unpaid, for a friend or family member who due to illness, disability, long term illness, mental health problem or an addiction cannot cope without their support. Neither the number of hours nor the types of tasks undertaken by the carer makes them an unpaid carer.
In 2025 Carers UK estimate there are 5.8million unpaid carers, 3 million of whom provide over 35 hours a week of care. In 2023 the economic the economic value of the contributions made by carers in England and Wales was £162 billion per year. https://www.carersuk.org/press-releases/unpaid-care-in-england-and-wales-valued-at-445-million-per-day/ That is 29% more in real terms than in 2011. This is equivalent to the NHS health budget spending. Unpaid carers not only save the social care system but also the NHS by providing care to their loved ones. Despite the huge financial saving unpaid carers provide to the economy Carers Allowance is the lowest benefit of its kind at only £83.30 per week (financial year 2025/2026) for providing a minimum of 35 hours per week (2024/25). However, many unpaid carers do not feel valued or supported in the role they provide. Carers UK’s research found 90% of carers do not think this benefit offers sufficient financial support. https://www.carersuk.org/reports/valuing-carers-research-report/  Furthermore, research undertaken by Carers UK found that 1.2million unpaid carers live in poverty. Research in 2023 by the Joseph Rowntree Foundation calculated the ‘caring penalty’, or the amount lost in earnings by those who take up caring for a loved one. This found that unpaid carers experience an average pay penalty of £414 per month, or nearly £5,000 per year, rising to £628 per month or nearly £8,000 per year after six years of providing unpaid care. https://www.jrf.org.uk/care/the-future-of-care-needs-a-whole-systems-approach#:%7E:text=If%20we%20broaden%20our%20scope,all%20carers%20is%2010.3%20million.
Against this financial backdrop it is important to know what benefits and other funds are available to unpaid carers.
Carers Allowance
Carers Allowance is payable to people who-
provide a minimum of 35 hours a week of unpaid care to someone.
The person they care for must be in receipt of Personal Independence Payment (PIP) Daily Living Component or Disability Living Allowance (middle or high rate care) or Constant Attendance Allowance
Are not in full time education- (classed as study more than 21 hours per week)
Earn less than £195/week (2025 figures) after NI contributions and tax. Note the allowed earing threshold has risen by £45 this financial year.
If you have been caring prior to applying for Carers Allowance, it can be backdated up to three months.
Carers Allowance isn’t means tested nor depend on National Insurance contributions. However, it does provide Class1 insurance contribution credits.  
A further benefit, Carers Premium, is available, but this is means tested so dependent on income and savings. It can be included as part of other benefits including Universal Credit and housing benefit. An amount equivalent to the Carer Premium is used to calculate Pension Credit.
Devolved Nations
Scotland
Carer’s Allowance is currently being replaced by Carer Support Payment in Scotland, but the amounts are the same. Carer’s Allowance Supplement – mygov.scot
Northern Ireland
For information on Carers Allowance go to Carer’s Allowance | nidirect
Carers Credit
Carers Credit is available for people who provide care for more than 20 hours a week.  Carer’s Credit is a National Insurance credit that helps with gaps in your National Insurance record. Your State Pension is based on your National Insurance record. You do not get any money from Carers Credit, rather National Insurance Stage 3 contributions are made so that your pension does not suffer as a result of caring.  Carers Credit is not means tested. People who claim Carers Credit can also be working.
Being paid by Direct Payments to care for a family member
A direct payment is where having had their care needs assessed by social services, the person needing the care, in this instance the person with severe ME, is given a budget to buy their own care. It is not usually possible to be paid to provide care for a family member, particularly if the carer and the person being cared for live in the same house.  However, in certain circumstances this might be possible and different councils and local authorities have different policies around this. A parent might be able to be paid direct payments to care for their child because of the child’s welfare. In England if adults need care, family members, particularly a family member who lives in the same household as the person needing care, can typically only be paid to provide care and support in exceptional circumstances. This usually means when there is no viable alternative available or for cultural or religious reasons. When caring for someone with severe ME, due to the very specific set of needs, such as only being able to provide care in very short sessions or the need for continuity of care in order to preserve existing low energy levels it might be argued that a family member living with the person is the only viable way to meet the person’s care needs. Note if the person is receiving tube feeding paid home care workers working for a care agency cannot usually attend to the feed. It would need to be a nursing care agency whose staff have received the necessary training.
In Wales people can use direct payments to pay family members. Part 4 Code of Practice the Social Services and Well-being Act (Wales) 2014, paragraph 165 says: “providing safeguards are in place the employment of a relative living in the same household is often the most suitable way of providing care.”
Before looking at being paid via direct payments to care for a family member it is important to consider how entering into an employment contract might affect the situation between the carer and the person they care for. For example, it might affect the relationship between the carer and the person receiving care. The person being cared for might expect informal care to continue in addition to the care being provided by the direct payment. On the plus side, the household income will increase so tensions cause by financial concerns may cease to be a problem.
Other discounts etc are available to unpaid carers. These include free tickets for carers to many tourist attractions although this will not be applicable to people who care for people with severe or very severe ME.
Other schemes which financially help carers and would apply to unpaid carers of people with severe ME include-
Council Tax reductions- As a carer it is worth noting if the unpaid carer and the adult receiving the care are the only adults living in the property you are discounted meaning that the property is eligible for the 25% single occupier discount. You are also eligible for a reduction in the council tax banding if a reception room is used as a bedroom or there is a room dedicated to therapy.
Not paying car tax- if the registered owner of the vehicle uses the car for the disabled person who is in receipt of Disability Living Allowance (DLA), Enhanced Rate of the mobility component of Personal Independence Payment (PIP), Child Disability Payment (CDP),  Adult Disability Payment (ADP), Scottish Adult Disability Living Allowance (SADLA)
People with severe ME should be in receipt of enhanced rate mobility PIP or high rate mobility DLA. This entitles them to a car via the Motability scheme. Under the scheme insurance, servicing and MOT and breakdown cover is provided free of charge. However, the persons mobility component of PIP or DLA will be paid directly to the scheme. Unpaid carers can drive them with the permission of the person in receipt of the benefit. However, it may not work out as the most cost effective way to afford a car.
Carers Experiencing Financial Hardship
Grants and schemes are available to support people experiencing financial difficulties. As outlined previously many households with a person with a long term condition, such as severe ME, and an unpaid carer experience financial difficulties. Such grants and schemes factor in that a person is a carer. Each council has a Household Support Fund or Welfare Fund. This can support with essential purchases eg purchasing a cooker. It can also support with paying utility bills. This does not affect your entitlement to benefits. The majority of broadband providers provide a Social Tariff for people on low incomes in receipt of government benefits.
Having a Carers Assessment
A carers assessment is undertaken by the local authority at the request of the unpaid carer. An unpaid carer is entitled to carers assessment whether or not the person they care for is in receipt of care from social services or NHS Continuing Healthcare. A carers assessment assesses the impact caring has on the unpaid carer. Carers can be offered a range of services including someone coming in to the home provide respite care to enable the unpaid care to go out each week. This can be paid by social services or paid as a direct payment direct to the carer to enable them to employ someone for this role. This is not means tested. Receipts must be provided to the local authority.  Asking the social worker to flexibly diarise the hours allowed per week for a sitting service may be beneficial.
In addition, through the carers assessment unpaid carers may be eligible for money to spend on jobs they would previously have done themselves around the house and garden including gardening and cleaning. Money to cover this is usually provide as an annual lump sum. Receipts have to be provided to show how the money is being used. This is not means tested. If an agency is going to be used to do the jobs, ensure the local authority is told as they pay a higher rate for agency cleaners etc.
During a carers assessment the local authority can make sure you are receiving the correct benefits and signpost on for further support if necessary.
 
 
Useful resources
The Care Act https://www.legislation.gov.uk/ukpga/2014/23/contents
Social Services and Well-being Act (Wales) 2014 https://www.gov.wales/sites/default/files/publications/2019-05/part-4-code-of-practice-meeting-needs.pdf
Citizens Advice
England and Wales https://www.citizensadvice.org.uk/
https://www.citizensadvice.org.uk/benefits/
England Telephone- 0800 144 844
Wales Telephone -0800 024 1220
Citizens Advice Scotland https://www.cas.org.uk/
 Scotland Telephone -0800 023 2581
Household Support Fund https://www.gov.uk/cost-living-help-local-council
Social Tariffs for broadband https://www.ofcom.org.uk/phones-and-broadband/saving-money/social-tariffs
Applying for free car taxhttps://assets.publishing.service.gov.uk/media/67eb99310678ace40a7f27be/ins216-how-to-apply-for-free-disabled-tax.pdf
https://news.motability.co.uk/motoring/do-you-need-to-pay-car-tax/
Getting a car under the Motability Schemehttps://www.motability.co.uk/
Charitable Organisations
Carers UK https://www.carersuk.org/
Turn2US https://www.turn2us.org.uk/
Carers Trust https://carers.org/what-we-do/what-we-do  
Information on Carers Assessments
https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/carer-assessments/
Carers Rights and the Law https://www.mobiliseonline.co.uk/carers-rights
This article, including the live links, are available at the 25% ME Group website under Severe ME Awareness Day 2025