Memorandum from the Motor Neurone Disease
Association (DDB 73)
1. BACKGROUND
1.1 Motor Neurone Disease (MND) is a rapidly
progressive neurological disease that kills three people everyday
in the UK—more than die from AIDS. MND affects the motor
neurones (nerve cells) in the brain and spinal cord. As the motor
neurones die, the muscles stop working.
1.2 It can affect any adult at any time
and leaves people unable to walk, talk or feed themselves, but
the intellect and senses usually remain unaffected.
1.3 There are currently more than 5,000
people living with MND in the UK, with a prevalence of around
seven per 100,000.
1.4 The cause of MND is unknown and there
is no known cure. On average it takes 16 to 18 months from first
symptoms to diagnose MND and half the number of people with the
disease die within 14 months of diagnosis.
1.5 The MND Association is the only national
organisation supporting people affected by MND in England, Wales
and Northern Ireland. Our mission is to ensure that people with
MND can secure high quality co-ordinated care and to promote research
into causes and treatments.
2. COMMENTS ON
THE DRAFT
BILL
2.1 Proposed change to the definition of disability
2.1.1 This is the only section of the draft
Disability Discrimination Bill which the Association will be commenting
on due to resource limitations. However, in principle we welcome
the Bill and hope it leads to better protection for people with
a disability.
2.1.2 The progressive nature of MND may
mean that at diagnosis people with the disease may not be defined
as disabled for the purposes of the Disability Discrimination
Act (DDA), as they may not have an "impairment which has
a substantial . . . effect on his ability to carry out normal
day-to-day activities". However, the disease is likely to
progress rapidly and the effects are likely to become substantial
relatively quickly. It is therefore important that people with
the disease are protected from discrimination from the point of
diagnosis.
2.1.3 MND usually affects people aged over
50 years and some people are either retired when they are diagnosed
or do not return to work after diagnosis. However, there are people
in their 20s, 30s and 40s living with MND and many will want to
continue working for as long as possible.
2.1.4 The Association believes that people
with MND should therefore be protected from discrimination from
the point of diagnosis, in the same way that people with Multiple
Sclerosis are protected under the draft Bill. Both conditions
are progressive neurological diseases and people with these diseases
should be treated equally.
February 2004
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