Claiming mobility benefits with fibromyalgia or ME/CFS

Is there still a "mobility allowance"?

Fibromyalgia and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) can make getting around very difficult. Pain, exhaustion and post-exertional malaise can mean a short trip leaves you unwell for days. Some people cannot go out without someone helping them, and for others public transport is not realistic.

Mobility Allowance no longer exists. Help with getting around now comes through the mobility part of a disability benefit:

• England, Wales and Northern Ireland: Personal Independence Payment (PIP), usually for new claims from age 16 until State Pension age. An existing award can continue after that.
• Scotland: Adult Disability Payment, run by Social Security Scotland, also usually for new claims from 16 until State Pension age.
• Children: Disability Living Allowance (DLA) in England, Wales and Northern Ireland, and Child Disability Payment in Scotland. Some adults still receive DLA from older awards. In Scotland, adults transferring from DLA may move to Scottish Adult Disability Living Allowance.

These benefits are not means tested, so income, savings and work do not affect your claim. For PIP you generally need to have had difficulties for three months and expect them to last at least another nine. Adult Disability Payment uses periods of 13 and 39 weeks. Special rules apply to terminal illness.

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How the mobility part is assessed

PIP and Adult Disability Payment each have a daily living part and a mobility part, paid at a standard or enhanced rate. Mobility is scored on two activities, and the points are added together: 8 points for the standard rate, 12 for the enhanced rate.

• Planning and following journeys: this covers difficulty working out or following a route because of cognitive or sensory problems, or overwhelming psychological distress. Needing someone with you does not score by itself, so explain why you need them.
• Moving around: how far you can stand and then move, with or without an aid, reliably. The key distances are 20, 50 and 200 metres. Physical walking limits are mainly assessed here.

You should only be treated as able to do an activity if you can do it safely, to an acceptable standard, as often as reasonably required and within a reasonable time. A reasonable time generally means no more than twice as long as someone without your condition would take. After effects count. Managing a distance once does not show you could repeat it later that day or the next.

The assessment looks at your ability over time, not just on the assessment day. Broadly, difficulties must occur on more than half the days, and there are rules for deciding which descriptor applies when your needs vary. A diary kept for a few weeks can show this, including any delayed worsening after ordinary activity. There is no need to walk to exhaustion or provoke symptoms to produce evidence.

Useful evidence records distances, pace, rests, help needed, recovery time and delayed effects. It might come from your GP, a pain clinic, a specialist ME/CFS service, a physiotherapist or an occupational therapist. Statements from carers or relatives can help too. Do not hold back your claim just to wait for a specialist appointment or a paid GP letter. You can ask for reasonable adjustments and for help with forms and assessments.

For current rates and how to claim, check GOV.UK, nidirect or mygov.scot.

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Help with a car, taxis and other transport

The mobility payment is paid to you and is not restricted to particular purchases. People often put it towards taxi fares, fuel for someone who drives them, or running their own car.

With enhanced rate PIP or Adult Disability Payment mobility, or higher rate DLA mobility, you may be able to join the Motability Scheme if at least 12 months remain on your award. You exchange your mobility payment to lease a car, wheelchair accessible vehicle, scooter or powered wheelchair. Leases usually include insurance, servicing and breakdown cover.

You do not need to drive. You can have up to three named drivers, subject to the Scheme's driver and insurance conditions. The vehicle must be used by you or for your benefit, although you need not be in it for every journey. Motability Operations publishes current guidance on permitted use.

Other help may include:

• Vehicle tax: exemption with enhanced PIP or Adult Disability Payment mobility, or higher rate DLA or Child Disability Payment mobility. Standard rate PIP or Adult Disability Payment mobility gives a 50% reduction, but lower rate DLA mobility does not. The vehicle must be registered and used as the rules require.
• Blue Badge: apply through your council in Great Britain, or through the separate Blue Badge service in Northern Ireland. Automatic qualification rules differ between nations. Others can apply based on walking difficulties or, in some cases, non-visible conditions.
• Disabled Persons Railcard: eligible applicants usually get a third off most rail fares in Great Britain, for themselves and one adult travelling with them. It does not cover Northern Ireland's rail network.
• Bus passes: through your council in England and Wales, the National Entitlement Card in Scotland, or SmartPass in Northern Ireland. Eligibility and conditions vary, and fibromyalgia or ME/CFS does not qualify you automatically.
• Access to Work: if you are employed, self-employed or starting work, this may help with transport such as taxis when your condition rules out public transport. Northern Ireland has a separate Access to Work (NI) scheme.

Support for carers and getting advice

Someone who cares for you for at least 35 hours a week may be able to claim Carer's Allowance, or Carer Support Payment in Scotland. This usually depends on you getting the daily living part of PIP or Adult Disability Payment, a qualifying DLA or Child Disability Payment care award, or Attendance Allowance or Pension Age Disability Payment. The mobility part alone does not count. Earnings limits apply, and a carer's claim can affect some means-tested disability additions you receive, so get a benefits check first.

New claims after State Pension age usually go to Attendance Allowance, or Pension Age Disability Payment in Scotland. Neither has a mobility component. An existing PIP or Adult Disability Payment award may continue.

If your claim is refused or the award seems too low, you can challenge it. For PIP, ask for a mandatory reconsideration, then appeal to a tribunal. For Scottish benefits, ask for a re-determination, then appeal. Deadlines apply. A decision can be changed on challenge, but success is not guaranteed, so get advice about the evidence and deadlines.

Free, independent help is available from Citizens Advice, Advice NI, Scope and local welfare rights services. Fibromyalgia Action UK, Action for ME and the ME Association also publish benefits guidance written with these conditions in mind.

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