Systemic vasculitis and relationships with healthcare staff

This page is about the importance of:
  • Developing trust
  • Building relationships
  • The human touch
For ideas to support service improvements for people with systemic vasculitis, see our ‘catalyst film’.

Developing trust

We often heard that trust in individual doctors could be won or lost from the start. Some of the women we spoke to worried about how their symptoms or emotions might be thought of differently because they are women. Lynn and Jane X said they try not to cry in appointments.

Jane X moved house but travels back to her rheumatologist for vasculitis care as, “once you’ve found one you trust, it just makes so much difference to your life.”

Marie felt one rheumatologist “really set the tone of, ‘I’m the master and you’re the silly wee girl.’”

It was common for people to tell us that meeting a specialist in vasculitis felt different. They could trust them because they ‘knew their stuff’ and asked questions that made sense.

After a difficult time getting diagnosed, Gail felt “secure” the minute she met her vasculitis consultant.

However, previous experiences could affect trust in particular doctors or in medical and other healthcare professionals more generally.

Difficult experiences in the past have made Roberta “frightened” about taking medication, but she worries her vasculitis team might stop supporting her if she doesn’t “do as they tell you to do.”

To get her physical health taken seriously, Holly feels she has to “pretend” that all is fine mentally.

Building relationships

When listening to people, it was clear how much they value good relationships with staff. They often told us things staff did to make that happen, such as taking a personal interest in their lives, really listening to them, and being honest when they don’t know something.

Peter feels able to ask his vasculitis consultants anything because “they’ve gone out of their way to develop a relationship with you.”

Angharad is “the expert” in her vasculitis. She respects staff who say they don’t know enough.

We also heard again and again about people’s efforts to contribute to the doctor-patient relationship through preparing for appointments and keeping a record of their symptoms.

Claudia tries to “work together with the doctor” by taking notes to her vasculitis clinic appointments.

The human touch

People told us that vasculitis and its management is complicated, so they appreciate when doctors can explain these things in a way they understand.

If Jeremy’s vasculitis consultant wasn’t such a skilful communicator, “I might have been very worried.”

We heard that communication is much more than talking, and that every member of staff people come into contact with can affect how they feel.

Vasculitis damaged Steve’s kidneys. “Little human touches” make a big difference to his healthcare.

People who thought their care had not been good often felt that should be acknowledged.

For Lynn, when healthcare professionals acknowledge poor care, it’s “a human connection that has got nothing to do with complaints or blaming.”