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Benefits and Work

Get the benefits you're entitled to!

Annabelle's Challenge is a professional member of the organisation Benefits and Work, which provides specialist guides to claiming Disability Living Allowance, Personal Independence Payment and Employment Support Allowance.

Benefits and Work, was launched in 2002 (and became a limited company in October 2006) by advice worker turned barrister Holiday Whitehead and benefits writer and trainer Steve Donnison, to provide just such information.

It is unique amongst benefits information providers in that it asks for no funding or support from the government, local authorities, grant making trusts or large companies. Every penny of Benefits and Work's revenue comes from its subscribing members.

This complete independence means that Benefits and Work is free to publish information that makes it deeply unpopular with the Department for Work and Pensions, multinationals with an interest in benefits - such as Atos Healthcare, Unum Provident and Capita - and even other advice providers whose dependence on state and corporate funding may have made them reluctant to tell the whole truth.

Obtaining the guides

The Benefits and Work guides are available free of charge to Annabelle's Challenge UK members and will be provided via email as downloadable files. To obtain information on the guides available please email info@annabelleschallenge.org or call us on 0800 917 8495 stating what you need assistance with.

Claim Benefits

Personal Independence Payment (PIP)

Personal Independence Payment (PIP) can help with extra living costs if you have both:

a long-term physical or mental health condition or disability
difficulty doing certain everyday tasks or getting around because of your condition

You can get PIP even if you’re working, have savings or are getting most other benefits.

For more information visit: https://www.gov.uk/pip and for guidance visit: https://www.benefitsandwork.co.uk/personal-independence-payment-pip

Disability Living Allowance (DLA) for children

Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

is under 16 (18 in Scotland)
has difficulties walking or needs much more looking after than a child of the same age who does not have a disability

They will need to meet all the eligibility requirements. The DLA rate is between £28.70 and £184.30 a week and depends on the level of help the child needs.

For more information visit: https://www.gov.uk/disability-living-allowance-children and for guidance visit: https://www.benefitsandwork.co.uk/disability-living-allowance-dla

Employment and Support Allowance (ESA)

You can apply for Employment and Support Allowance (ESA) if you have a disability or health condition that affects how much you can work.

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

You can apply if you’re employed, self-employed or unemployed.

For more information visit: https://www.gov.uk/employment-support-allowance and for guidance visit: https://www.benefitsandwork.co.uk/employment-and-support-allowance

Universal Credit

Universal Credit is a payment to help with your living costs. It’s paid monthly - or twice a month for some people in Scotland. You may be able to get it if you’re on a low income, out of work or you cannot work.

For more information visit: https://www.gov.uk/universal-credit and for guidance visit: https://www.benefitsandwork.co.uk/universal-credit-uc

Carer's Allowance

Carer's Allowance is the main welfare benefit to help carers. You may still be able to claim it, even if you don't think of yourself as a carer for someone with vascular EDS.

Carer's Allowance is worth £81.90 per week (for April 2024-25) and is usually paid every four weeks. You'll also get National Insurance credits each week towards your pension if you're under pension age.

You could be eligible if you:

spend at least 35 hours a week caring for a disabled person (you don't have to live with them or be related to them)
care for someone who receives the higher-rate or middle-rate care component of Disability Living Allowance, either rate of Personal Independence Payment daily living component, or any rate of Attendance Allowance
do not earn more than £151 a week (after deductions)
are not in full-time education

You don't have to be related to or live with the person you care for to claim Carer's Allowance. It's extra money each week for you to use as you want or need to. For more information visit: https://www.gov.uk/carers-allowance

Blue Badge

Who can get a Blue Badge

If you're disabled or have a health condition that affects your mobility, you can apply for a Blue Badge. You can also apply for a badge if you care for a child with a health condition that affects their mobility.

A Blue Badge costs up to £10 in England and £20 in Scotland. It's free in Wales. They usually last up to 3 years.

You’re automatically eligible for a Blue Badge if you:

are registered as blind
get the higher rate of the mobility component of Disability Living Allowance (DLA) - check your decision letter if you're not sure
get War Pensioners’ Mobility Supplement
received a lump sum payment as part of the Armed Forces Compensation scheme (tariffs 1 to 8), and have been certified as having a permanent and substantial disability

If you get Personal Independence Payments (PIP)

You’re automatically eligible for a Blue Badge if you either:

scored 8 points or more in the ‘moving around’ area of your PIP assessment
scored 10 points in the ‘planning and following journeys’ area of your PIP assessment and were put in category ‘E’ - this means your stress, anxiety or other mental health issue stops you leaving the house

Check your PIP decision letter if you’re not sure.

If you're not automatically eligible

You can still get a badge if:

you have long term problems walking or going to places - including problems caused by stress, anxiety or other mental health issues
you have severe problems using both your arms
you're applying on behalf of a child aged over 2 who has problems walking or going to places, or a child under 3 who needs to be close to a vehicle because of a health condition

Check your local council for information about the scheme: https://www.gov.uk/blue-badge-scheme-information-council

Employment Advice

Do I have to tell my employer?

The majority of adults diagnosed with vascular EDS continue with their employment.

You do not have to tell your employer you have vascular EDS. But if your employer knows about your condition, they may be able to make reasonable adjustments. For example, this could mean time off for hospital appointments or flexible working hours.

We understand this is not always possible depending on the relationship you have with your employer especially as vascular EDS is an invisible illness. We can speak to your employer on your behalf to discuss your diagnosis and how to adjust in the workplace for example:

Giving you time off to go to medical appointments
Risk assessment
Changing your job description
Depending on your job role we advise not to lift weights above 10kg
Different working hours, such as working part-time, having a flexible start or finish time or working from home

Fatigue

Although it's important to remember that not everyone living with vascular EDS will experience fatigue, for those that do, the symptoms and severity can differ from person to person.

What is fatigue?

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn’t the same as simply feeling drowsy or sleepy. When you’re fatigued, you have no motivation and no energy. Being sleepy may be a symptom of fatigue, but it’s not the same thing.

Fatigue is a common symptom of many medical conditions that range in severity from mild to serious. It’s also a natural result of some lifestyle choices, such as lack of exercise or poor diet.

Fatigue can:

vary in intensity at different times of the day and from one day to the next
disrupt your sleeping patterns.

Fatigue can't:

be seen by others, making it difficult for them to understand how it's affecting you
be relieved by resting or sleeping, meaning it can have a huge impact on your quality of life and in the workplace.

You employer should make allowances if you are suffering from fatigue. For HSE guidance visit: https://www.hse.gov.uk/humanfactors/topics/fatigue.htm

Power of Attorney

A power of attorney is a legal document that allows someone to make decisions for you, or act on your behalf, if you're no longer able to or if you no longer want to make your own decisions.

Putting in place a power of attorney can give you peace of mind that someone you trust is in charge of your affairs.

If you're aged 18 or older and have the mental ability to make financial, property and medical decisions for yourself, you can arrange for someone else to make these decisions for you in the future. This legal authority is called "lasting power of attorney".

The person who is given power of attorney is known as the "attorney" and must be over 18 years old. You are known as the "donor".

Lasting Power of Attorney (LPA)

This includes:

health and welfare LPA
property and financial affairs LPA

Health and welfare LPA

A health and welfare LPA gives your attorney the power to make decisions about your daily routine (washing, dressing, eating), medical care, moving into a care home and life-sustaining medical treatment. It can only be used if you're unable to make your own decisions.

Property and financial affairs LPA

A property and financial affairs LPA gives your attorney the power to make decisions about your money and property. This includes managing your bank or building society accounts, paying bills, collecting your pension or benefits and, if necessary, selling your home.

Once registered with the Office of the Public Guardian, it can be used immediately or held in readiness until required. For more information visit: https://www.gov.uk/lasting-power-attorney-duties

Last Updated: May 2024.