Arthritis New Zealand works to be the voice of people with arthritis and we are establishing a network of people around New Zealand who are interested in working with us to help this voice become loud and strong. Too often the concerns of people with arthritis are dismissed as just a bit of arthritis and arthritis dismissed as an old person’s aches and pains.
If you would like to become part of our work to give voice to people with arthritis and help we would love to hear from you. Fill out our advocates registration form [Word, 42kb] and send it to Francesca.firstname.lastname@example.org.
Priority issues for us are:
- Making arthritis a priority health issue for government
- Access to rheumatology services
- Access to new medications
- Providing better support for people newly diagnosed with arthritis particularly people of working age.
- Employment Issues
- Reform of ACC process
While these issues are our current priority areas we are always keen to hear from you about your experiences and issues you think we should be aware of- especially in your local community. If you want to tell us about an issue you think is important.
1. Access to rheumatology services
There is a shortage of rheumatologists in New Zealand. This is most noticeable in, Hawkes Bay and Nelson Marlborough DHB areas and some parts of New Zealand are better served than others. Nowhere do we meet what might be considered as optimal levels of service. These were defined in 1994 by the National Advisory Committee on Core Health and Disability Services as : 1 FTE per 100,000 population. In 1995 the British Society for Rheumatology: defines the optimal level as 1 FTE per 85,000 population. Whanganui isthe only centre which comes close to the 1994 standard.
The lack of specialists results in delays in being referred for appointment and therefore delays in diagnosis and treatment. Triaging of patients means some conditions such as fibromyalgia and osteoarthritis are unlikely to be seen by specialist at all in parts of New Zealand. The situation has improved over the last seven years but still not good news if you have arthritis. Are you having difficulty getting to see a rheumatologist? Let us know.
2. Access to new medications
- Managing symptoms – particularly pain
- Preventing damage to joints
- Maintaining joint function.
Arthritis New Zealand acknowledges the role of PHARMAC in ensuring that New Zealanders has a comprehensive and cost efficient medicines funding process. We do however challenge PHARMAC and the government to ensure that the needs of people with arthritis are met within this system.
Advances in treatments for inflammatory arthritis such as juvenile idiopathic arthritis (JIA), rheumatoid arthritis (RA), ankylosing spondylitis (AS) and psoriatic arthritis (PsA) among others mean that it is realistic for people to achieve remission or a state of low disease activity. New Zealand has been very slow to adopt these pharmaceuticals and although access has improved over the past five years there remain big concerns about the late access to biologic treatments and the limited number of treatments that are purchased.
While we acknowledge the cost of these medications we believe that not funding these medications adds cost in other areas including:
- Increased hospitalisations
- Reduced ability to work with the subsequent need for benefits and
- An increased need for carer support.
3. Support for newly diagnosed
As one of our advocates puts it ‘more importance needs to be put on the emotional needs of someone newly diagnosed with arthritis’. It is essential that alongside a medical diagnosis people are able to talk to others with the same condition and learn that they are not alone. We have a network of support groups – some meet up, others use social media – the important thing is to have contact and support each other. If you would like to make contact with a support group call us toll free on 0800 663 463.
4. Employment Issues
Take a look at the Fit for Work report in our news section – this is a New Zealand first and reveals that disability and chronic health conditions are two of the main obstacles to maintaining employment for many people. We now have information on common employment issues available: