Getting State Benefits

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The two main benefits that CFS/ME sufferers should consider are:

  • Employment and Support Allowance - if you are unable to work
  • Personal Independence Payment - if you have care needs - you do not need to 'receive' those care needs, but you must have care needs

The rules are complex and this page is only an overview - please see the links as below for more information and help.

Employment and Support Allowance

See site on ESA
When you make a claim for ESA you will usually have a Work Capability Assessment and you may also be asked to take part in a medical assessment. There are two groups of ESA.

1. Work-Related Activity Group

You will be expected to take part in work-focused interviews with your personal adviser. You will get support to help you prepare for suitable work. In return, you will receive a work-related activity component in addition to your basic rate.

2. Support Group

If your illness or disability has a severe effect on your ability to work, you won't be expected to work or to take part in work-focused interviews. But, you can work on a voluntary basis if you want to. You will receive a support component in addition to your basic rate.

Personal Independence Payment

See site on PIP
This has two components. You may be able to get both components or just one of them. It is a tax free benefit for those under 65.

  • Daily Living component - this is for when you need help with daily tasks, eg preparing food. There is a higher and lower rate.
  • Mobility component - this is for when you have mobility needs. There is a higher and lower rate.

People with CFS/ME

For a CFS/ME sufferer the important point is not what you can manage on that day, or even that hour, or minute, but what you can manage without causing delayed onset of symptoms or a worsening of your condition. Qualify every question – eg you may be able to climb stairs, but only once a day. You may be able to walk 20 metres but only four times a day. Make sure that you make this very clear on your forms, and in any interviews.

Also, do note what the effects of doing certain tasks is on your symptoms, and stress the variability of your symptoms.

You will be asked about certain activities and whether you can do them. Don't say yes, if you can do them once and then you are in bed for hours, or even longer, as a result.

The legal test is that you should be able to do that task reliably and this means:

  • ‘Safely’ – in a way unlikely to cause harm to yourself or others - MIGHT YOU FALL OVER AND HURT YOURSELF?
  • To an acceptable standard - EXACTLY WHAT IT SAYS!
  • ‘Repeatedly’ – as often as is reasonably required - WHAT ABOUT PEM? PAYBACK?
  • ‘In a reasonable time’ – no more than twice the maximum amount of time a 'normal' person would take. HOW SLOW IS YOUR WALKING?

Answer every question with these points in mind.

If you can’t do an activity “safely, to an acceptable standard as often as you need to and in a reasonable length of time”, then you can’t do it. Don’t worry that you might be repeating yourself. Give examples from your life,and describe a 'typical day'.

DWP guidance states that ‘pain, fatigue, breathlessness, nausea and motivation’ will all be ‘key factors’ in deciding whether an activity can be carried out reliably.

CFS/ME is a fluctuating condition - a descriptor [i.e. one of the tasks and how "well" you can perform it - e.g. preparing food] will apply to you if it reflects your ability for the majority of days, i.e. more than 50% of days. This will be considered over a 12-month period – looking back three months and forward nine months. So, if you can prepare food, 4 days out of 7, you will be taken as being capable of preparing food, but if you can prepare food only 3 days out of 7, then you will be taken as not being capable of preparing food. This is a vast simplification but hopefully the idea is clear.

Useful sources of Information and Help

Letters of Support

I do write letters of support for all types of State Benefits. Obviously I do need to have detailed knowledge of your individual medical and health circumstances - please email for further details. - Caroline

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