Services to help people live with systemic vasculitis

This page covers:

  • Systemic vasculitis and rehabilitation services
  • Systemic vasculitis and mental health services
  • Systemic vasculitis and hearing and eye care services

For ideas to support service improvements for people with systemic vasculitis, see our ‘catalyst film’.

Systemic vasculitis and rehabilitation services

Some of the people we spoke to were admitted to hospital when they were very ill with vasculitis. As part of their rehabilitation, they saw allied health professionals such as physiotherapists, occupational therapists, speech and language therapists and dietitians.

Jane has a brain injury from when she collapsed due to undiagnosed vasculitis. She had rehabilitation in the hospital gym and therapy kitchen.

Vasculitis affected Grant’s swallow. He was fed by a tube then had a “tailored” diet plan as it recovered.

Allied health professionals also saw people who were living at home, although it appeared that referrals were not always suggested or easy to get. Due to nerve damage from vasculitis, Isabella saw an occupational therapist who gave her exercises such as stretches and using tins of soup as dumbbells. Some people had physiotherapy from specialists in heart or lung rehabilitation, and Wendy had a series of one-to-one pilates sessions with a physiotherapy assistant. Through speech and language therapy, Charlie tried an electronic device when he lost his voice, but it sounded “robotic” and was “incredibly challenging” to use.

Once people were recovering from vasculitis and felt more confident about exercising again, we often heard that they found personal trainers and fitness services useful. However, they sometimes needed referrals or support from healthcare professionals to do this.

When a gym felt Dean’s vasculitis would be too risky, a doctor went “above and beyond” to get him in.

Systemic vasculitis and mental health services

With vasculitis, people sometimes described having suicidal thoughts, depression, or a more general need for support and understanding. Nicola asked to speak to a psychiatrist for support when she was first diagnosed, but we more usually heard that people looked for help further down the line. As Wendy said, “the problem with vasculitis is that you’re continually re-traumatised by it, it’s so unpredictable.”

A combination of talking therapy and medication has helped Peter deal with “very scary” suicidal tendencies that followed his vasculitis diagnosis.

We heard that waiting lists for support could be a problem but that help with mental health came from a range of sources. People accessed psychological services and counselling via the NHS, local authorities, employers or other organisations, and Mo had used online self-help resources. Both Wendy and Angharad felt it was important to have individual rather than group support, and to recognise that it would not be a quick fix.

Dawn is a carer. Counselling helped her come to terms with vasculitis and start “looking after myself.”

Drama therapy was “extraordinarily powerful” in helping Wendy make sense of her life with vasculitis.

People who found mental health support useful often talked about the value of talking to someone outside their family. Lynn, for example, said, “the thoughts and feelings that come into your head, you don’t want to burden people that you love with those, you don’t want them to truly understand the depths of your despair about what is happening.”

Not everyone we spoke to was offered support for their mental health and not everyone felt they would benefit. Nicky believes that “you’ve just got to get on with it yourself” and is happy that this has “got me through so far.”

Richard hasn’t been offered services to help him live with vasculitis and doesn’t feel the need.

Systemic vasculitis and hearing and eye care services

People whose hearing was affected by vasculitis could be referred to NHS audiologists. This has worked well for Pete, but Mo now goes privately because “the technology is quite good.” Wendy is frustrated by the complicated referral process to get her hearing aids adjusted.

Vasculitis affects Pete’s hearing. Audiologists regularly adjust the hearing aids that made him feel like a “real person” again.

Eye care services were important for people whose vasculitis is a threat to their eyesight. Wendy gets scleritis (painful inflammation) so attends an eye clinic, although it can be difficult to know when her symptoms are scleritis or something less serious such as dry eye. Isabel and Graham have a type of vasculitis called giant cell arteritis (GCA), where specialist eye clinics and high street opticians can both be involved in care.

Vasculitis left Graham with single vision. An eye clinic assistant encouraged him to persevere with golf.

When Isabel’s eyesight became distorted, the optician saw her quickly and “read up” on her vasculitis.