advocacy via the UK Coalition at a time when there
was little or no user involvement in HIV clinics.
The User Group meets every few months and one achievement was getting
a patients' toilet re-sited to ensure greater privacy. The group has also
been consulted about changes to patient records.
According to Garry: "The group's greatest
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Peter Twist (left) and Garry Brough: clinic campaigners
achievement has been its part in campaigning for the establishment of
an in-house pharmacy." A survey showed that by far the greatest dissatisfaction
at the clinic came from having to get drugs from the general pharmacy.
Comments to the survey largely focused on pharmacy waiting times that
had often been as much as three to five hours. One commented: "Waiting
times are the key issue." Another: "I have waited four hours
on the last two visits." Another: "They often change the prescription
without informing the patient or change the dosage." And lastly:
"One day I was queuing and someone before me was getting his HIV
drugs. Everybody could hear. I felt terrible and the person had no privacy."
The group campaigned hard and 312 questionnaire returns more than justified
their efforts. Nearly all supported an in-house pharmacy, but sadly 80
per cent hadn't heard of the User Group or noticed posters around the
clinic.
Many people, quite understandably, just want to get on with the long process
of seeing their doctor, getting bloods done and collecting medications
as quickly as
possible. It takes extraordinary dedication not only to get user groups' up and running but to keep them going and to be heard.
