Small number of people on PIP receive monthly payments for writer’s cramp

People with writer’s cramp may be unaware that financial support for the neurological movement disorder is available through Personal Independence Payment (PIP). While the number of claimants for hand dystopia is very small - just five across Great Britain - this may be due to a lack of awareness about help available.

Writer’s cramp is a specific type of focal dystonia that affects your fingers, hand, or forearm which impacts writing, causing it to become painful and written work less legible. Dystonic writer’s cramp is much rarer and causes involuntary movements or muscle cramps when people are not writing and doing everyday tasks such as using a knife and fork or applying make-up.

Focal dystonia of the hands is a neurological movement disorder where the brain sends incorrect information to the muscles, causing involuntary, excessive muscle contractions. These signals can also make your hands twist into odd postures.

Anyone can get a task-specific dystonia like writer’s cramp and symptoms usually appear between the ages of 30 and 50. Task-specific dystonias - particularly musician’s cramp - are more common in men.

If you or a family member have writer’s cramp, or musician’s cramp, you could be eligible for PIP or Adult Disability Payment (ADP). The latest figures from the Department for Work and Pensions (DWP) show that at the end of April there were more than 465,000 people across Great Britain receiving support through PIP for 70 neurological conditions - which includes writer’s cramp.

The list of conditions, recorded as the main disabling condition by the DWP during the PIP application process, is not definitive and it’s important to be aware that it’s not the condition itself that determines the outcome, but how the condition affects the claimant.

The Neurological Alliance says that one in six people in the UK are affected by a neurological condition, which it defines as “any condition that affects the brain, spinal cord and/or nerves.”

It adds: “Because these systems control your mind and body, neurological conditions can affect the way you think and feel and interact with the world. Neurological conditions can affect anyone at any age.

PIP claimants with neurological conditions

The breakdown of claimants includes:

• Scotland: 25,722 (does not include those on ADP)

• England and Wales: 438,983

• Living Abroad: 453

• Unknown: 27

• Great Britain Total: 465,187

There are also 32,691 people over State Pension age claiming Attendance Allowance for a neurological condition. You can find out more about claiming the benefit here.

A successful claim for PIP or ADP is worth between £28.70 and £184.30 each week in additional financial support and as the benefit is paid every four weeks, this amounts to between £114.80 and £737.20 every pay period.

Neurological conditions supported through PIP, ADP and Attendance Allowance

Below is the list of 70 neurological conditions being supported through PIP or ADP to help with either daily living, mobility needs or a combination of both components.

Cerebrovascular disease

• Cerebrovascular accident (stroke)

• Cerebrovascular disease - Other / type not known

• Transient ischaemic attacks (TIAs/mini stroke)

Epilepsy

• Cataplexy

• Generalised seizures (with status epilepticus in last 12 months)

• Generalised seizures (without status epilepticus in last 12 months)

• Narcolepsy

• Partial seizures (with status epilepticus in last 12 months)

• Partial seizures (without status epilepticus in last 12 months)

• Seizures - unclassified

Non epileptic disturbance of consciousness

• Disturbances of consciousness - Non-epileptic - Other / type not known

• Drop attacks

• Non epileptic Attack disorder (pseudoseizures)

• Stokes Adams attacks (cardiovascular syncope)

• Syncope - Other / type not known

Movement disorders

• Blepharospasm

• Essential tremor - benign

• Huntington's disease

• Movement disorders - Other / type not known

• Parkinson's disease

• Parkinson's syndrome / Parkinsonism

• Torticollis

• Tourette's syndrome

• Writer's cramp

Multiple sclerosis

Benign tumours

• Neurofibromatosis

• Tumours - benign - Other / type not known

Hydrocephalus

Headache

• Dizziness - cause not specified

• Headache - Other causes of / cause not known

• Migraine

Head injury

• Head injury - Cognitive and sensorimotor impairment

• Head injury - Cognitive impairment

• Head injury - Sensorimotor impairment

Spinal cord compression

• Paraplegia (traumatic)

• Spinal cord compression - Other causes of / cause not known

• Syringomyelia / Syringobulbia

• Tetraplegia (traumatic)

Degenerative neuronal diseases

• Degenerative neuronal diseases - Other / type not known

• Motor neurone disease

Cerebral palsy

• Cerebral palsy - Ataxic

• Cerebral palsy - Athetoid

• Cerebral palsy - Diplegic

• Cerebral palsy - Hemiplegic

• Cerebral palsy - Other / type not known

• Cerebral palsy - Quadriplegic

Spina bifida

Ataxia

• Ataxia - Friedrich's

• Ataxias - Other / type not known

Neuropathy

• Charcot Marie Tooth disease

• Diabetic neuropathy

• Guillain Barre syndrome

• Neuropathies - Other / type not known including peripheral

Peripheral nerve injury

• Brachial plexus

• Peripheral nerve injury - Other / type not known

Disease of muscle

• Dermatomyositis

• Dystrophia myotonica

• Muscle - Other diseases of / type not known

• Myasthenia gravis

• Polymyositis

Muscular dystrophy

• Facioscapulohumeral dystrophy

• Muscular dystrophy - Becker type

• Muscular dystrophy - Duchenne

• Muscular dystrophy - limb girdle

• Muscular dystrophy - Other / type not known

Infections

• Creutzfeldt - Jacob disease (CJD)

• Infections - Other

• Poliomyelitis and post polio syndrome

• Prion diseases - Other / type not known

Other neurological disorders

• Neurological disorders - Other / type not known

Below is an overview of PIP and ADP. Even though new claims for PIP have been replaced in Scotland by ADP, it shares most of the same eligibility criteria. Full guidance on ADP can be found on the MYGOV.SCOT website here.

Who might be eligible for PIP or ADP?

To be eligible for PIP or ADP, you must have a health condition or disability where you:

• have had difficulties with daily living or getting around (or both) for 3 months

• expect these difficulties to continue for at least 9 months

You usually need to have lived in the UK for at least two of the last three years and be in the country when you apply.

In addition to what we have outlined above if you get or need help with any of the following because of your condition, you should consider applying for PIP or ADP.

• preparing, cooking or eating food

• managing your medication

• washing, bathing or using the toilet

• dressing and undressing

• engaging and communicating with other people

• reading and understanding written information

• making decisions about money

• planning a journey or following a route

• moving around

There are different rules if you are terminally ill, you will find these on the GOV.UK website here.

DWP or Social Security Scotland will assess how difficult you find daily living and mobility tasks. For each task they will look at:

• whether you can do it safely

• how long it takes you

• how often your condition affects this activity

• whether you need help to do it, from a person or using extra equipment

How are PIP and ADP paid?

PIP and ADP are usually paid every four weeks unless you are terminally ill, in which case it is paid weekly. It will be paid directly into your bank, building society or credit union account. ADP is paid at the same rates as PIP.

What are the PIP and ADP payment rates?

You will need an assessment to work out the level of financial help you will receive and your rate will be regularly reviewed to make sure you are getting the right support.

PIP is made up of two components:

• Daily living

• Mobility

Whether you get one or both of these and how much depends on how severely your condition affects you.

You will be paid the following amounts per week depending on your circumstances:

Daily living

• Standard rate: £72.65

• Enhanced rate: £108.55

Mobility

• Standard rate: £28.70

• Enhanced rate: £715.75

How you are assessed

You will be assessed by an independent healthcare professional to help the DWP determine the level of financial support, if any, you need, for PIP.

Face-to-face consultations for health-related benefits are offered alongside video calls, telephone and paper-based assessments - it's important to be aware that the health professional and DWP determine which type of assessment is best suited for each claimant. You can find out more about DWP PIP assessments here.

Adult Disability Payment assessments will not involve face-to-face assessments, unless this is preferred by the claimant - find out more about the changes here.

How do you make a claim for PIP?

You can make a new claim by contacting the DWP, you will find all the information you need to apply on the GOV.UK website here.

Before you call, you will need:

• your contact details

• your date of birth

• your National Insurance number - this is on letters about tax, pensions and benefits

• your bank or building society account number and sort code

• your doctor or health worker’s name, address and telephone number

• dates and addresses for any time you’ve spent abroad, in a care home or hospital

How to apply for ADP

People can apply ADP, over the phone, by post or in-person. To find out more or apply, visit the dedicated pages on mygov.scot here or call Social Security Scotland on 0800 182 2222.