Sunday, 1 November 2015

Open Letter to Lord Patten, Chancellor of Oxford University

Dear Lord Patten


As founder of The Tymes Trust for children with ME, which recently
won the Queen's Award for Voluntary Service and a member of the Chief
Medical Officer's Working Group on ME, I have been shocked this week
by the level of media abuse being heaped on ME patients
suggesting that their illness is mental or imagined, or just ordinary fatigue.
This has issued from an Oxford University report on ME which is ill-informed
and very damaging for extremely vulnerable people. In my view, the report should
never have been funded by Oxford. Stanford University says it is
shocked this report was published by Oxford University.

On the Chief Medical Officer's working group, I met top physicians who said that
psychiatrists have an interest in promoting a false 'mental' theory
about ME (and surely also the insurance industry?). They told me that
psychiatrists now have no other career paths than making ME 'mental', since
most former mental illnesses have now been proved to be physical.

Top physicians believe ME is a kind of stroke in the brain, as I do,
or at least causes similar damage to a stroke neurologically. I
recovered from ME damage in time, to do further exams,
re-routing round serious brain damage. To be forced to do competitive
exams with lesions in the brain is a torture which no young person
should have to go through, or without serious adjustments, such as lowered
lighting, longer time to think and type or write (which is difficult in ME),
breaks to rest and to recuperate.

As an Oxford University English graduate myself, I have been even
more shocked by an article today (below) in the Sunday Telegraph,
by a recent undergraduate of the university, suffering from ME, writing
about how her physical illness, which is a serious disability was treated by
Oxford University. See this article:

This story casts an even deeper shadow over Oxford University -
especially after all our years of campaigning and raising awareness
about ME. I feel in your role as Chancellor of Oxford University, you should be able
to change this culture of dismissive ignorance which fails on 'duty of care'.
After all, what parents would want their child to go through such
an appalling experience, bound by lifelong loans, doing Oxford
exams without legal adjustments, with a broken mind and body?

Universities are bound by The Equality Act and Disability Discrimination
Act and should be working very hard to provide reasonable adjustments for
all those with disabilities, including those with hidden disabilities - like ME.

My career and life chances have been been facilitated by the
my employer's strict adherence to this disability legislation, including
at first, my own room, to keep lighting low, while I recovered. Following a
professional workplace assessment, this employer happily put in place measures such
as flexible hours and  equipment to reduce visual and nervous stress.

As a result of this enlightened approach, I have had a 'life' and career,
instead of ongoing marginalisation and ME 'social torture'. My talents
and education were useful. This is the effect of obeying the law
on people with ME. Oxford University will appreciate that, surely?

Yours sincerely etc

No comments:

Post a Comment