Getting State Benefits
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The benefits worth looking at are:
- Incapacity benefit - for patients unable to work. You may have to do the Personal Capability Assessment.
- Disability Living Allowance - for extra money to help with disabilities which prevent patients caring for themselves - this is made up of a care and a mobility component.
There is huge variability from region to region as to who gets benefits and who does not. If you are unreasonably turned down, ask for the reasons why, including a copy of the examining doctors report. Ask for help from Citizens Advice Bureau, or a solicitor. I can help with preparing you an appeal, but there is a charge for reports. Please phone in and ask Caroline (my secretary).
See CFS Ability Scale - a rough measure of how disabled you are.
The Personal Capability Assessment
For this test initially you have to do 2 things:
- Answer a questionnaire sent to you asking about your illness (form IB50).
- Get a statement from your doctor, on which he has to provide a diagnosis and details of how your condition affects your ability to work. This form is called a "form med 4" (it's new, large and green). The form is completed by the GP and given to the patient. Following this, about half will be asked to attend a medical examination by a DSS doctor.
The decision about capability for work is made by an Adjudication Officer.
How this Affects People With CFS
CFS is not listed as an illness which automatically excludes patients from the ". This means that sooner or later CFS patients will have to undergo an "All work test" and the opinion expressed on "form med 4" is important.
On any medical certificate a doctor may state incapacity for work for two reasons:
- "the patient is definitely unable to work because of a physical or mental disorder," and/or
- "it would be prejudicial to their health to undertake work."
The fundamental problem with CFS patients used to be that there was no objective test which measures the degree of disability. This meant that the doctors involved could chose either to believe or disbelieve a patient. Hence the usefulness of the Mitochondrial Function Profile which gives an objective measure of fatigue. I can do strong supportive letters if this test shows disability!
Dealing With The "Personal Capability Assessment"
The "Personal Capability Assessment" looks at 14 specified areas of physical and sensory function namely: walking, walking up and down stairs, standing, sitting, rising from sitting, bending and kneeling, lifting and carrying, manual dexterity, reaching, speech, vision, hearing, continence, remaining conscious at time other than normal periods of sleep. For each of these activities, there are levels of ability which are assessed. In assessment of mental health there are 4 specified areas: daily living, completion of tasks, coping with pressure and interaction with other people.
For an CFS sufferer, the important point is not what you can manage on the day, but what you can manage without causing delayed fatigue. Qualify every question - for example you may be able to climb stairs, but only once a day . You may be able to wak 20 yards but only 4 times a day. Make sure all this goes on the form!
I spoke to the DSS doctors at Birmingham who tell me that CFS is a recognised disease, so when you go, ask the examining panel if they recognise CFS as a physical disease.
Further information from the local Social Security Office, leaflet IB201.
Related Tests
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References
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Registered Office: Upper Weston, Llangunllo, Knighton, Powys, Wales LD7 1SL, UK.
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