Lupus Site

I used to work for the Benefits Agency, so when I became ill I knew what benefits I was entitled to claim. Unfortunately many people don't know what they could be claiming & are therefore missing out. I'm going to take a brief look at benefits that lupus sufferers might be entitled to.

Incapacity benefit (formerly known as Invalidity benefit) may be paid to people who are incapable of work, & is what is known as a contributory benefit, in other words you need to have paid a certain number of National Insurance contributions to qualify (you'll need to check with your local DSS, but if you haven't worked in the last two years then the chances are you won't qualify). You also need to get a sick note from your doctor & fill in a claim form SC1.

When you start receiving the benefit you will probably be sent a questionnaire booklet to fill in, this is known as the all work test. The DSS decides on your ability to work from your answers on this questionnaire. You score points for activities you find difficult or painful, like walking, standing, lifting. When you are filling in the questionnaire think carefully about the questions. Do not say you can do something unless you are sure you can. Once you have sent the questionnaire back, you may be asked to go for a medical. Make sure you tell the doctor everything you have put in the questionnaire, or anything you may have missed. Don't just answer yes or no, explain your difficulties. Also tell the doctor about any mental health problems, like anxiety, depression, & how they affect your life, because the doctor may not ask you any direct questions about this. The doctor then sends a report to the DSS showing how you have been assessed in the all work test. The DSS then makes a decision about whether or not you are fit for work. If they decide you are fit for work, & you disagree you have a limited time in which to appeal. If this happens, it's best to get advice from your local Citizens' Advice Bureau or Welfare Rights Office.

Another benefit is Disability Living Allowance (DLA). DLA is for people who need help with personal care, getting around, or both because they are ill or disabled. Normally help must have been needed for at least 3 months & is likely to be needed for at least a further 6 months.

There are two components- The care component- this is available to people who have difficulty with everyday tasks like washing, dressing/undressing, their toilet needs & other tasks connected with personal care. Also for people who need someone to keep an eye on them or need someone to look after them when they are on dialysis. The component is paid at three rates. The lower rate is paid to people aged 16 or over who are unable to prepare & cook a main meal. The middle rate is paid to people who need help during the day OR night. The higher rate is paid to those who need 24 hour care.

Mobility component- is paid to people who need help getting around.This component is paid at two rates. The higher rate is paid to people who cannot walk at all, have no legs or feet, can only walk a short distance before experiencing severe discomfort & people for whom the effort of walking could be dangerous. The lower rate is paid to those who can walk but need someone with them to make sure they are safe or need someone with them to help them find their way around places they do not know well.

You will need to fill in claim form DLA1, which consists of two or three booklets, don't be put off though. If you feel you need help filling in the form ask a friend, or get help from the CAB or Welfare Rights. As we all know, with lupus you can have good days & bad days, you will get the opportunity on the form to explain this. Once the form is returned the DSS will decide if they have got enough information to make a decision, if not they may decide to send a doctor out to see you. Again, explain to the doctor how the illness affects you, don't be afraid to admit what you can & can't do. Once a decision has been made, you will be notified if you have been awarded DLA. If the DSS say you aren't entitled to DLA, you have the right of appeal, again it's best to get advice & help from the C.A.B. or Welfare Rights.

I've just covered the three main benefits for disability & incapacity; there are others such as income support, council tax benefit & housing benefit. If you think that you might be entitled to any of the above benefits, contact either your local DSS office or ring one of the numbers below, for more information, advice & a claim form. Remember, everyone with lupus is different, some people might be able to work, others can't, some can get benefit, some can't, but if in doubt, get advice, you may be entitled to something that you 're not claiming.

Benefit enquiry line - 0800 882200
Advice & information for people with disabilities

Disability Living Allowance helpline - 0345 123456
Advice on existing DLA claims

Look in the phone book for the number of your local Citizens' Advice Bureau, Welfare Rights Office or Benefits Agency office.

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