Claiming Benefits in the UK for Fibromyalgia

Advertise on UK Fibromyalgia

What is Disability Living Allowance (DLA)?

Disability Living Allowance (DLA) is a benefit that is given to those individuals who find it difficult to cope by themselves. This benefit is split into three levels and each level is representative of the nature of your condition. There is a low, middle and high rate of benefit awarded and each rate is – as we have already mentioned – awarded depending on the nature and circumstances of your illness.

It is important to take into account that Disability Living Allowance is only given to those individuals who qualify and in order to qualify you must complete a medical assessment, which is carried out by an independent doctor once your application has been received and processed. This examination will determine whether or not the information you have provided in your application is correct and will also assess at what level you may qualify for assistance.

You can claim Disability Living Allowance (DLA) if you are under 65, have a disability of a physical or mental nature and are unable to walk – or if your condition is severe enough that you need assistance when it comes to looking after yourself

What is Mobility?

Mobility is the second component of the Disability Living Allowance (DLA) and is paid at two rates – either what is described as the lower or higher rate, depending on your condition. This addition sum is paid on a weekly basis and may be paid if you need assistance with travel.

For example if you cannot drive or have no transport then this additional sum can be used to pay for the cost of your travel either by taxi or public transport (should you be able to travel in this way).

Mobility can also be used for the purchase of a vehicle under the government’s Mobility scheme – this scheme allows you, or some designated by you as a carer, to have a car that will be used in order to transport you from A to B if your condition does not allow for travel by public transport or if you are too ill to walk.

It is important to note however that if you qualify for Mobility then you will not receive the additional sum of money as laid down in the Mobility component of the Disability Living Allowance (DLA) – this money is used to pay for the vehicle you use.

What Happens if I am Refused Disability Living Allowance (DLA)?

If you have been turned down for Disability Living Allowance you have one month after you have been informed of the outcome to appeal the decision. If you are awarded an appeal then you may have to appear before an independent tribunal who will hear your case and also the case against your claim and it is their decision that is final.

If your application has been turned down then you should make grounds for appeal as soon as you can if you feel that your case is justified.

A Guide to Disability Living Allowance

With thanks to www.adviceguide.org.uk

What is Disability Living Allowance

Disability Living Allowance (DLA) is a benefit for disabled people under 65. To get DLA, you must have personal care needs or difficulty with walking (also called mobility) because of either a physical or mental disability. DLA has two parts, the care component and the mobility component. The care component is paid at three rates depending on how often and how much you need care. The mobility component is paid at two rates, depending on how much difficulty you have with walking. Depending on your needs, you may get one component of DLA, or both together.

Who can get Disability Living Allowance

You can get Disability Living Allowance (DLA) if:
  • you claim before you are 65, and
  • you have had care needs or mobility needs for at least three months, and
  • you are likely to have these needs for at least another six months.

If you are already getting DLA when you reach 65, you can continue to get it as long as you still have care or mobility needs.

You will not be able to get DLA if you are living permanently in a hospital or in a care home and your local council is helping you with your fees.

To get DLA, you must have lived in the UK for six months in the last year. However, this rule doesn't apply to people who are terminally ill. You must be living in the UK when you make a claim for DLA and the UK must be your normal place of residence. You must not have any immigration controls on your stay here that would stop you getting the benefit.

It may be possible to carrying on getting the care component of DLA if you move to another EEA country or Switzerland. You may also be able to claim for the first time if you’re living in one of these countries.

You can get DLA whether or not you work. It isn't usually affected by any savings or income you may have.

If you are not sure if you can get DLA, you should consult an experienced adviser, for example, at a Citizens Advice Bureau.

Care needs

You have care needs if:

  • you need help with things like eating, washing, getting dressed, going to the toilet or communicating your needs
  • you need someone to supervise you to stop you being a danger to yourself or others
  • you need someone with you when you are on dialysis. You must need to have dialysis at least twice a week. If you're an out-patient, you will only get DLA if no member of the hospital staff helps you with or supervises the treatment
  • you need someone with you to help you lead a normal social life.

You do not actually have to be getting help for your care needs to qualify for DLA. As long as you have a care need, it does not matter whether you are actually getting care.

The care component of Disability Living Allowance (DLA) is paid at three different rates. You get the lower rate if you need help with cooking a main meal or care for a significant part of the day. You get the middle rate if you need frequent care throughout the day or night, or continual supervision throughout the day or night. You can also get the middle rate if you need someone with you while you're on dialysis. You get the higher rate if you need frequent care or supervision throughout the day and night, or if you are terminally ill.

There are slightly different rules if you are claiming the care component for a child under the age of 16.

Care component - rates

Mobility component Weekly rates from 6 April 2009
Higher rate £70.35
Middle rate £47.10
Lower rate £18.65

If you want to know more about how to qualify for the care component of DLA, you should consult an experienced adviser, for example, at a Citizens Advice Bureau.

Mobility needs

The mobility component of DLA is paid at two different rates.

You get the lower rate if you cannot walk outdoors on an unfamiliar route without guidance or supervision from another person for most of the time. This could be because of either a physical or mental disability.

Some examples of when you might be entitled to the lower rate of the mobility component include if you:
  • have mental health problems which affect your ability to walk
  • have learning difficulties and have only learned familiar routes
  • have dementia
  • are blind or partially sighted
  • are deaf and have not learned how to cope safely with traffic
  • have epilepsy
  • have panic attacks - but this must be a symptom of a mental disability
  • suffer from phobias, obsessive behaviour or have no sense of danger - but this must be a symptom of a mental disability
  • have severe agoraphobia, that is, a fear of being outside.

You get the higher rate mobility component if you're unable or virtually unable to walk because of pain, the effect on your health or the limitations on your walking. You can only get the higher rate if:

  • your difficulties with walking are caused by a physical disability, or
  • you have severe learning difficulties or severe behavioural problems and you qualify for the higher rate care component.

If you are blind and deaf and you use a guide dog, you will still qualify for the DLA mobility component if you can show that you would need help from another person if you didn't have the dog, or if you were using a new route unfamiliar to the dog.
You do not actually have to be receiving help with your mobility needs to get the mobility component of DLA, as long as you can show that you need it.

Mobility component - rates

Mobility component Weekly rate from 6 April 2009
Higher rate £49.10
Lower rate £18.65

If you want to know more about how to qualify for the care component of DLA, you should consult an experienced adviser, for example, at a Citizens Advice Bureau.

How to apply for Disability Living Allowance

There are two forms for claiming DLA - one if you're claiming for someone aged 16 or over and another if you're claiming for someone aged under 16.

There are several ways of claiming DLA.

The Benefits Enquiry Line

You can claim DLA by phoning the Benefits Enquiry Line and asking them to send you a claim form. They can send you the claim pack in an alternative format if needed - for example, Braille. They can also arrange for someone to help you fill out the form if required.
If you request a form from the Benefit Enquiry Line, the date of request will be treated as your date of claim from which DLA can be paid, as long as the form you receive is returned within six weeks of that date. If you delay making a claim, you may lose out on benefit.

Make a claim online

You can make a claim for DLA online. Go to the Directgov website at: www.direct.gov.uk.

Contacting your Jobcentre Plus or social security office

If you request a form from your local Jobcentre Plus office or local social security office, the date of request will be treated as the date from which DLA can be paid. You can get contact details of your local office from the Directgov website or look in your local telephone book. You must return the form you receive within six weeks of the date of your request. If you delay making a claim, you may lose out on benefit.

Downloading a form from the Directgov website

You can download a claim form from the Directgov website to print off and fill in using a pen. Or you can complete a claim form on your computer, then print it off and sign it. This option isn't available in Northern Ireland. Go to: www.direct.gov.uk or www.dsdni.gov.uk in Northern Ireland.

Send the form to your local Jobcentre Plus office or local security office. You can get a contact details of your local office from the Directgov website or look in your local telephone book. The date of your claim will be the date that your local office receives the form.

You cannot get DLA for any period before you make your claim.

You will have to provide your national insurance number and proof that it belongs to you. If you think you have a national insurance number but you do not know what it is, you should provide information to help the office find it. If you do not have a national insurance number, you will have to apply for one.

If you need more time to return all the information needed, you should let the office dealing with your claim know.

The claim form for DLA is long and you can get help completing it. You can use the forms completion service offered by the Benefits Enquiry Line. Alternatively, you could consult an experienced adviser, for example, at a Citizens Advice Bureau.

After your local benefit office receives your form, you may need to have a medical examination. For more information about medical examinations when you claim DLA, go to the Directgov website.

Once you have made your claim, you can get advice on Disability Living Allowance from the Disability Living Allowance helpline who should have access to your records. The contact details are:

Tel: 08457 123 456
Textphone: 08457 22 44 33
Email: DCPU.Customer-Services@dwp.gsi.gov.uk

You can also use the RNID Typetalk service.

The help line is open 7.30 am to 6.30 pm Monday to Friday.

It will usually take around 39 working days to deal with a new claim, unless the claim is made under the special rules, in which case it will be dealt with much more quickly.

How is Disability Living Allowance paid

Disability Living Allowance (DLA) is usually paid directly into a bank or building society account. If you cannot open an account or you have difficulties with this method of payment you should let the office dealing with your claim know. It is possible to pay DLA by cheque in some circumstances.

DLA is paid as long as you have care or mobility needs. It may be awarded for an indefinite period or a fixed period. However, the benefit is affected if you go into hospital, and for the care component if you go into a care home or other residential accommodation that is state funded.

Problems with Disability Living Allowance

If you are refused Disability Living Allowance (DLA), or get less than you think you should, you can challenge the decision. You can either ask for the decision to be looked at again, or you can appeal. You should do this within one month of the decision.

If you are thinking of asking for a decision to be looked at again or of appealing against it, you should get expert advice. This is because there might be a risk that your Disability Living Allowance could be reduced or even stopped. Your local Citizens Advice Bureau should be able to help.

If you are not happy with the standard of service you have received from the benefits office, the Department for Work and Pensions, the Social Security Agency in Northern Ireland or the Benefit Enquiry Line, you can complain. This might be because of delays, errors, rudeness or difficulties in making contact. You can complain whether or not you also want to challenge a decision.

A Guide to Employment and Support Allowance

(In October 2008, the Department for Work and Pensions (DWP) launched Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA). This replaced Incapacity Benefit.)

Employment and Support Allowance (ESA) is for people who:
  • can't work because of sickness or disability, and
  • aren't getting Statutory Sick Pay.

There are two types of ESA:

  • contributory ESA, which you can get if you have paid enough national insurance contributions
  • income-related ESA which is paid if your income and capital are low enough.

You may be able to get both contributory ESA and income-related ESA, depending on your circumstances. For both types of ESA, you will usually have to have various tests to confirm that you have limited capability for work.

For most new claims, ESA replaces Incapacity Benefit and also Income Support for people getting it because they can't work due to sickness or disability. If you are already getting Incapacity Benefit or Income Support because of sickness or disability, you can carry on getting it and you do not have to claim ESA.

ESA is paid by the Department for Work and Pensions (DWP) and, in Northern Ireland, by the Social Security Agency.

Who can get Employment and Support Allowance

To get Employment and Support Allowance (ESA), you must be 16 or over and under state pension age (60 for a woman and 65 for a man). You must be unable to work because of sickness or disability and you must not be entitled to Statutory Sick Pay.

You cannot get ESA if you or your partner are getting Income Support, income-based Jobseeker’s Allowance or Pension Credit. You have to be ordinarily resident in the UK. For income-related ESA, you must not have any immigration controls on your stay here that would stop you getting the benefit.

To qualify for contributory ESA, you will usually have to have paid enough national insurance contributions. However, if you become unfit for work before you are 20 (25 if you have been in full-time education) you do not need to meet the contribution conditions or have paid national insurance.

To get income-related ESA, your income will be compared with the amount that the government thinks is enough for you to live on. If your income is less than this amount, you will get the maximum amount of ESA, depending on your circumstances. If your income is more than this amount, you may get some income-related ESA. You can't get any income-related ESA if you have savings of more than £16,000.

If you have a mortgage and qualify for income-related ESA, you may get help with some of your housing costs, for example, the interest due on the mortgage loan. If you pay rent, you should check if you can get Housing Benefit. If you get income-related ESA, you will get the maximum amount of Housing Benefit allowed for your circumstances.

ESA continues if you go into hospital.

How to claim

In most cases, your claim itself will start with a phone call to Jobcentre Plus on 0800 055 66 88 (textphone 0800 023 48 88 for people with speech or hearing difficulties). You will need your postcode and identification such as your National Insurance number. You may also need to provide information about your rent or mortgage, any current employment, income and savings.

Some Jobcentre Plus call centres may send their initial questions out to you (the ESA1 form).
People who are unable to claim by phone can claim via a representative or interpreter, either by completing a printed ESA1 claim form, or face to face through most Jobcentre Plus offices. It is possible to apply online at www.dwp.gov.uk/eservice

Once your claim has been processed you will receive the basic rate payment and will enter the assessment stage.

Assessment stage

The claims process will vary depending on the severity of the illness and the following summary is intended only as a general guide

1. For the first 13 weeks (the assessment stage) most claimants will receive a basic rate payment.

2. During this period, all but the most severely disabled claimants are likely to be sent:

  1. a form (the ESA50 questionnaire) asking for more information about their illness or disability, which should be completed and returned within six weeks. Further information about completing this form is provided in our factsheet.
  2. a letter asking them to go to a local medical centre for a Work Capability Assessment
  3. a letter asking them to attend a Work-Focused Interview (WFI)

3. The Work Capability Assessment (WCA) will probably take place about 6 weeks after the initial claim has been made. It will involve a face to face interview in a medical centre with a healthcare professional from Atos Healthcare, which will last up to 75 minutes. In exceptional circumstances it can be carried out within the claimant’s home.

The WCA replaces the Personal Capability Assessment. It consists of 3 parts:

  1. Limited Capability for Work Assessment (LCW or LCWA)
  2. Limited Capability for Work-Related Activity Assessment (LCWRA)
  3. Work-focused Health-Related Assessment (WFHRA)

4. A Work-Focused Interview will take place about 8 weeks after the ESA claim has been made. An adviser will discuss the claimant’s benefit entitlement, work aspirations and available support.

Nearly all sick and disabled people who claim ESA, National Insurance Contributions Credits or Housing Benefit because they cannot work, will have to have a WCA. Only people with the most severe levels of disability will not have a WCA. Others will have to go through at least 2 interviews, more probably 5 or more.

Following assessment

Following the assessment stage claimants entitled to ESA will be placed in either the Support Group (people who have an illness or disability that is too severe for them to undertake any form of work-related activity) or the Work-Related Activity Group.
Those in the Work-Related Activity Group will be expected to engage with a personalised programme of back-to-work support. They will attend up to 5 further Work-Focused Interviews with a Personal Adviser, generally on a monthly basis, to agree an action plan of training or other personalised support intended to enable them to manage their illness and retain or obtain work skills.
The amount that a claimant then receives will depend on which group they are placed in.

How much is Employment and Support Allowance

How much Employment and Support Allowance (ESA) you can get depends on whether you are entitled to contributory ESA or income-related ESA or both. It also depends on whether or not you are in the first 13 weeks of your claim. This is because you are entitled to the support component or work-related activity component if you continue to get ESA after 13 weeks.

Contributory ESA

If you are only entitled to contributory ESA, you will only get a basic allowance in the first 13 weeks. This amount is less if you are under 25. After the first 13 weeks, you will also get a support component or a work-related activity component. Also, if your basic allowance was smaller because you are under 25, it will now be the same as for everyone else. Your contributory ESA may be reduced if you're getting an occupational or personal pension.

Income-related ESA

You will be entitled to income-related ESA if your income is less than the amount the Government thinks you need to live on. You'll get a basic allowance, which tops up your income to the amount that the Government thinks you need. This basic allowance is less if you are under 25. On top of the basic allowance, you may qualify for some premiums, for example, if you are severely disabled or if you are a carer. You may also be able to get some money towards your housing costs if you own your own home.

After the first 13 weeks:

  • you will be entitled to a support component or a work-related activity component
  • if your basic allowance was smaller because you are under 25, it will now be increased.


Tips for claiming

There are two components to DLA – mobility and care. Even if you only fill in details for one component the other will be looked at also. Therefore it is advisable to fill in both parts. The mobility component has a low and high rate. You cannot apply for one rate in particular, as it is up to the Adjudication Officer to decide which, if any, you qualify for. If you re-apply for DLA (either components) you could lose what you already have.

Mobility component

The main criterion here is whether you are unable or virtually unable to walk without severe discomfort. The problem for people with fibromyalgia is convincing someone of that severe discomfort and that it can prevent us walking very far. When assessing this for yourself, measure what is an average distance to walk for you and how long it takes to walk that distance (along the flat, not uphill or upstairs). This must be a very short distance and has been stated as being no more than 50 metres and probably less even on one of your better days. However any additional information that you give is very important.

Care component

One of the criteria for this part is whether or not you can cook a meal from raw meat and two raw vegetables for yourself on a regular basis, using a normal oven.

Other criteria concern your personal hands-on care requirements e.g. having a bath, washing your hair, getting out of a chair etc.. Housework needs and shopping are not considered for this benefit.

It is the amount of care you need that determines the rate at which you will qualify for the care component. Thus it is essential that you put down the amount of time that you need help for, even if it is only sometimes two minutes; the minutes add up

If having read this you think you qualify for DLA, please do the following:

  1. Keep a diary.
  2. Contact your local Department for Works and Pension (formerly Benefits Agency) and ask for a claim pack.
  3. Study the pack carefully, take measurements and make notes on a separate piece of paper.
  4. Contact your local Department for Works and Pension (formerly Benefits Agency) and ask for a claim pack.
  5. Study the pack carefully, take measurements and make notes on a separate piece of paper.
  6. Write down everything you suffer from e.g. Irritable Bowel, Raynaud’s Disease. Do not assume that the adjudication officer or even the doctor knows that they can be part of the fibromyalgia syndrome.
  7. Go to or contact your local Citizen’s Advice Bureau, Welfare Rights office or disability agency such as DIAL and get help filling in the forms. This is essential.
  8. Keep a copy.
  9. If you are not successful you should ask for a review and failing that you can go to appeal. You have only one month in which to appeal.
  10. Get help from the CAB or Welfare Rights for a review or appeal. Ask if someone from one of these organisations can represent you – if they can you have a considerably higher chance of winning your appeal (probably 30% higher). Please note it is now necessary to ask for an oral hearing if you wish to attend the hearing yourself.
  • If your appeal fails: a) You can apply again after 1 month. Prior to this they will look at your previous form.
  • b) You will be told that you can appeal to the Commissioners. N.B. This can only be done on a point of law, not on the basis that you do not agree with the decision.

Incapacity benefit

The major concern with this benefit is the “All Work” test.

The aim of this questionnaire is to discover whether you are fit to do ANY work at all, not just the job you were doing. To pass it you must score 15 points. The questions deal with how far you can walk, how long you can sit down or stand up, climbing stairs, picking up objects, bowel and bladder control and mental problems.

If you receive one of these forms, please do not panic but follow these steps:

  1. Go through the form carefully and make notes on all the areas you have problems with. Remember that if you say, for example, that you could walk 200 metres, this means for 5 consecutive days. Then ask yourself if this is actually the truth. If not make a note as to why not.
  2. Go to or contact your local CAB or Welfare Rights office and get help in filling in the form. This is essential.

It is also very helpful if your doctor supports you, because if you are turned down, particularly for Incapacity Benefit, their support whilst you go to review or appeal will be important to you.

If you are already in the process with either of these benefits please firstly go to your local CAB or Welfare Rights for help. If you are then still having problems we will talk these through with you, but the Association cannot write letters to support your case, because each person is affected differently.

One of the most frequent comments we hear from people with fibromyalgia is, “The government does not recognise fibromyalgia.” This is not true. Fibromyalgia is also listed in a book that the Department for Works and Pensions doctors use for Incapacity Benefit and possibly for DLA.

Useful contacts

Citizen Advice Bureaus are an excellent resource to help with benefit claims:
www.adviceguide.org.uk

Disability Alliance:
Free fact sheets
www.disabilityalliance.org

DWP Benefit Enquiry Line:
Tel: 0800 882 2000
Mon-Fri 8.30am-6.30pm, Sat 9am-1pm
www.dwp.gov.uk/esa

Jobcentre Plus:
www.jobcentreplus.gov.uk

Benefits help on the UK Fibromyalgia forum:
www.ukfibromyalgia.com/forums/

Entitled to:
People across the UK are missing out on benefits and tax credits worth more than £5 billion a year. Entitled to can help make sure you get what is yours. Just use this simple calculator to work out how much you could claim.
www.entitledto.co.uk/