DDB 73 Motor Neurone Disease
SUBMISSION TO THE JOINT COMMITTEE
ON THE DRAFT DISABILITY DISCRIMINATION BILL
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
7 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.
Alison Railton
Campaigns Manager
MND Association
David Niven House
10-15 Notre Dame Mews
Northampton
NN1 2BG
Tel: 01604-611842
Fax: 01604-638289
February 2004
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