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.
Last year we surveyed our members and clients to see what issues were most important for them. This survey showed that priority issues are:
1. Access to rheumatology services
2. Access to new medications
3. Concerns at changes to Sickness and Invalids benefits
4. Providing better support for people newly diagnosed with arthritis particularly people of working age.
These issues are our current priority areas but 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
Pharmaceuticals play an important role in the treatment of all forms of arthritis. Medicines assist people with:
· 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:
·Reduced ability to work with the subsequent need for benefits and
·An increased need for carer support.
3. Concerns at changes to sickness and invalids benefits
We know that many people find their arthritis is a barrier to their being able to work. In our last survey on members and clients, over half the participants said their arthritis had affected their ability to work. We are cautiously supportive of changes to disability and invalids benefits made in this year’s Budget. If the money for Supported Living Payments and Job Seekers really does add investment to help people with arthritis stay in work and support employers to make the necessary adaptations for people with arthritis then it is great news – great for the people who want to work and great for New Zealand if some of the 25,000 people with arthritis who can’t work now are supported into jobs.
However the fact remains that many people with arthritis will need to access benefits and we need to closely monitor the implementation of changes to ensure they do deliver a fair and equitable outcome for people with arthritis. We are pleased to see the Invalids benefit being renamed as Supported Living Payment, as labeling people with disabilities as invalids has long been a point of contention.
4. 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.
5. Employment Issues
As part of our advocacy programme we are conducting a survey of members and clients to get some information about your experiences in the paid workforce. We are wanting to encourage and support people to stay in paid employment as long as possible but know that this can be difficult at times and we want to look at possible barriers and consider how they can be overcome .
Do take a look at the Fit to 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
Here is the link to the survey which will only take a few minutes to complete and be of great help to us- https://www.surveymonkey.com/s/3D3JTJ8. Please feel free to forward this link to others who may be interested in this issue.
6. Advocates network
If you are interested in working with Arthritis New Zealand to help us speak up for people affected by arthritis join our advocates network. Advocates provide a consumer voice for our awareness campaigns, provide feedback on issues and concerns, and act as our eyes and ears in their local communities. We have identified the following key priorities for our national advocacy focus:
- Access to rheumatology services and new medications
- Workforce and benefit issues
- Support for newly diagnosed
If you are interested in joining our advocates network call our 0800 line or e mail Francesca.email@example.com. We have advocates meetings coming up in Auckland, Wellington, Whangarei and Hawkes Bay in November and Decmber and meetings planned in other centres early next year.