No grounds for testing

Last autumn, I was invited to Havering’s learning difficulties
centre to meet a consultant psychiatrist for adults with learning
difficulties. He told me about some proposed tests for local adults
with learning difficulties who received medication for challenging
behaviour. He explained that lots of people with a learning
difficulty who receive such drugs should not and that the test
would help identify how this happened. The drugs would compare the
effects of a typical neuroleptic drug, an atypical drug and a
placebo drug.

But why target vulnerable people who may have difficulty
understanding the reason for the tests and who may not be able to
give informed consent? Questions have to be answered before
expecting people to take part in tests; support must be offered to
help them understand and to say yes or no. Helping the medical
profession understand its drugs should not be an expected duty for
people with learning difficulties. Do the victims of doctors’
misuse of drugs also have to be the victims of a test to find out
why?

People First Havering invited the consultant psychiatrist to
discuss the tests further. In November 2002, he told us people must
give their consent to the test, although the family of a person
could do so if that individual could not. Members of our group felt
it was not right for another person to give consent to a test, as
it is not a life-threatening situation.

We raised our concerns with the university in charge of the study
but its letter back was just a token gesture. They said the local
authority’s ethics committee had already approved the project. In
April, a People First Havering advocacy supporter discovered a
resident of a private residential home was already taking part in
the drug testing after their family gave consent.

The biggest surprise about all this, whatever the study’s outcomes,
is that no one seems outraged about the tests except for some of
our group. We are so good at “caring for” people but there is an
element of control in caring for. What about “caring about”? In
this case it seems to be lacking. Do we really care enough about
these issues to make sure that people are not being used by
others?

This drugs test situation may be a long-term issue that needs
looking at. It will need people to address it who truly care about
their fellow humans. If this were about lesbian and gay rights or a
physical disability or race issue, many people would be actively
demonstrating against the injustice. Are people with a learning
difficulty the only minority group left where injustice and
inequality are accepted on a daily basis? Are they still excluded
enough from mainstream life that they are not thought about by
those outside of the learning difficulty world? The only thing that
bad practice needs to grow is for good people to do nothing.

Mike Le Surf is an advocate for People First
Havering