Campaigners calling for more help for sufferers of rheumatoid arthritis are launching their own support network.
The charity has formed a network for people with rheumatoid arthritis
The National Rheumatoid Arthritis Society said there is a shortage of consultants and specialist nurses.
It is helping to train volunteers who can provide emotional support to patients facing a wait for treatment.
The society has highlighted the case of Barbara Hayman, from Tregaron, who has seen an NHS consultant only once in the five years since she was diagnosed.
The organisation claims Ms Hayman is one of around 800 people in Ceredigion with rheumatoid arthritis, a painful disabling disease which can cause severe disability.
The 61-year-old thought she had tendonitis in her left wrist but, when the pain appeared in her other wrist, she was diagnosed after a simple blood test.
She was referred to a consultant some distance away who assessed her, and put her on appropriate medication, but she has not seen him since.
In five years, she has not received any further expert assessment or treatment.
The National Rheumatoid Arthritis Society said many people in Wales with the condition do not have access to adequate services.
Barbara Hayman was diagnosed with RA five years ago
From Tuesday, it is training volunteers at Withybush Hospital in Haverfordwest to help provide emotional support for sufferers. It follows a pilot project in the south of England.
Dr Amanda Coulson, consultant in rheumatology at the hospital, is one of the volunteer trainers.
She said: "There is still a perception that rheumatoid arthritis (RA) is a disease only of the elderly but this isn't the case.
"This debilitating disease affects people of all ages, including young adults, adolescents and even children, and is much more common than people realise.
"RA has a significant impact on people's quality of life. Support for patients, and their carers, living with this life long condition can help make the burden easier to bear."
The condition affects approximately three times more women than men and onset is generally between 30 and 50 years of age.
There are as many as 12,000 children under 16 in the UK living with the juvenile form of the disease.
The Welsh Assembly Government said it was working on a policy and action plan for people with arthritis and is committed to improving standards and access to services for patients.