Letter to the Chairman of the Committee
from Janet Dean MP (DDB 146)
I understand that the Joint Committee on the
Draft Disability Discrimination Bill will soon publish a report
making its recommendations to Government.
In my position as Chair of the All Party Parliamentary
Group for Lupus, I have been made aware of concerns of lupus patients
that Systemic Lupus Erythematosus- (SLE) is not named in the Draft
Bill. I understand that it is suggested that three diseases, MS,
AIDS and cancer are named in the proposed legislation.
SLE is more common worldwide than MS and yet
is much less well known. This causes problems to patients through
misdiagnosis, delayed diagnosis and difficulties in claiming benefits.
Lupus patients, whilst not advocating that MS should not be included,
are, nevertheless, concerned that the omission of SLE will further
perpetuate the lack of knowledge and understanding of the disease.
They feel that to include three medical conditions and not others
like SLE is in itself discriminatory.
There are many similarities between MS and SLE,
indeed many of those with SLE have progressive deterioration in
health and can exhibit symptoms as patients with MS. As with MS.
there are those with SLE who find themselves relatively free of
flares and can lead a normal life, but there are also those who
become disabled and unable to work.
There are reported difficulties in respect of
Incapacity Benefit, in that patients have been advised that puffing
SLE alone on a form would not be considered in the same way as
if MS were written.
I hope that the Joint Committee and Government
will seek to avoid discrimination within the Draft Disability
Discrimination Bill, whereby MS is mentioned by name whilst others
like SLE are not. I have written in a similar vein to Stephen
Ladyman MP, Parliamentary Under-Secretary of State at the Department
of Health.
April 2004
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