Living with ANCA Vasculitis

Talking to others with the same experience can help and make you feel part of a community. This is where you will make friendships with people who understand what you are going through, share experiences and learn about the condition.

 It is helpful to look up as many websites as you can to gain as much information. There are a number of credible websites around the world, they are listed under links on this website.

The websites have video links which are helpful and the information about ANCA vasculitis is well presented.

It is also helpful to pass this information on to your family and friends so that they understand what you are experiencing.

Have a good repport with your medical professionals so that you can communicate your symptoms well.

The following link takes you to a guide on how to help you make the most out of your Rheumatology / Specialists appointments. It is well presented . https://connectedrheumatology.com/the-productive-rheumatology-appointment-guide

Some patients may experience pain. It is best to speak to your consultant at the onset and arrange pain relief and management. 

The following is a link to Health Navigator NZ for the management of chronic pain.

https://www.healthnavigator.org.nz/health-a-z/c/chronic-pain/

There are two major types of stress: stress that’s beneficial and motivating, and stress that causes anxiety and even health problems.

There are a number of helpful ways to relieve stress and you have to find something that suits you personally .The following link to health Navigator NZ on how to cope with stress is very good.

https://www.healthnavigator.org.nz/health-a-z/s/stress/

Adapting to life with vasculitis can be a challenge which will become easier the more you know about it. Most people can cope more effectively with the changes in their lives if they understand what is happening and why.

In most cases life will be different but not necessarily worse.

Emotions, relationships and sexuality can come up on open vasculitis forums here a link to the UK Vasculitis UK that is helpful.

https://www.vasculitis.org.uk/living-with-vasculitis/emotions-relationships-sexuality

Healthline

Call Healthline on 0800 611 116 for free advice from trained registered nurses. They are specialists in assessing and advising over the phone. Phone calls are free from within New Zealand. Healthline which is provided by the Ministry of Health is available 24 hours a day, 7 days a week. 31

Call Healthline if you are:

feeling unwell – but not sure whether you need to see a doctor

needing some urgent advice about a family member or friend who is sick

on holiday and want to know where the nearest doctor or pharmacy is.

If you need to talk to someone in your own language, Healthline can usually arrange this using an interpreting service.

Care Plus

Care Plus is a primary health care funding initiative to support people with high health needs due to chronic conditions, acute medical or mental health needs, or terminal illness. This is administered by the Ministry of Health. Ask your GP if you are eligible.

Podiatrists

You may require some help with your feet. You can get help through a referral from your GP or rheumatologists to a hand therapist. Or you can go privately.

Find one in your area https://www.podiatrynz.com/find-a-podiatrist

Mobility Parking Permits

You may be eligible for a mobility car parking permit if:

You are unable to walk and always require the use of a wheelchair, or

Your ability to walk distances is severely restricted by a medical condition or disability. If for example, you require the use of mobility aids, experience severe pain, or breathlessness, or

You have a medical condition or disability that requires you to have physical contact or close supervision to safely get around and cannot be left unattended. For example, if you experience disorientation, confusion, or severe anxiety.

Your doctor needs to confirm your eligibility, unless you have a long-term permit.

https://www.ccsdisabilityaction.org.nz/mobility-parking

Ministry of Health Home Care Support

The Ministry of Health may be able to help you with support in your own home, with a range of services available if you meet the eligibility criteria, see the links below.

Home and Community Support Services

Home and Community Support Services are services funded by the Ministry to help you live at home. They can help with both household management and personal care.

Household management may include help with:

meal preparation

washing, drying or folding clothes 33

house-cleaning, vacuuming and tidying up.

Personal care may include help with:

eating or drinking

getting dressed or undressed

getting up in the morning or getting ready for bed

showering or going to the toilet

getting around your home.

See web site https://www.disabilitysupport.govt.nz/disabled-people/support-and-services/housing-and-transport/living-at-home-and-in-a-community-residence/community-residential-support-services

Community Residential Support Services

Community Residential Support Services are one of a range of support services funded by the Ministry of Health. These services assist disabled people to live in a supported community environment.

See web site www.health.govt.nz/your-health/services-and-support/disability-services/types-disability-support/community-residential-support-services

Equipment and Modification Services

Do you have difficulty doing everyday activities? If you or someone in your family has a physical, intellectual, sensory (vision or hearing) or age-related disability, you may be able to get some equipment or modifications to your home or vehicle to assist you.

See web site https://www.disabilitysupport.govt.nz/disabled-people/support-and-services/housing-and-transport/modifying-your-home

Individualised Funding

Individualised Funding is a way of paying for Home and Community Support Services which lets you directly manage the resources you’ve been allocated for disability supports.

See web site www.health.govt.nz/your-health/services-and-support/disability-services/types-disability-support/individualised-funding

Work and Income

ANCA vasculitis may make it very difficult for you to work due to a limitation on your physical functioning, mobility, dexterity or stamina.

Work and income may be able to support you while you’re not able to work and help you realise your work goals. When it’s right for you and your family, they can help you find part-time or full-time work, get training, or become self-employed.

See overview of available services https://www.workandincome.govt.nz/work/health-and-disability-job-support/job-search-help-if-youre-disabled-injured-or-have-a-health-condition.html

Help with living expenses

Work and Income may be able to help you with living costs if you’re not able to work, or are working fewer hours because:

you have a health condition, injury or disability

you’re caring for someone with a health condition or a disability

Community Services Card: A card that can help you and your family with the costs of health care. You’ll pay less on some health services and prescriptions. See https://www.workandincome.govt.nz/products/a-z-benefits/community-services-card.html

Residential Support Subsidy: A subsidy for residential care needed because of a physical, intellectual, or psychiatric disability. See www.workandincome.govt.nz/eligibility/health-and-disability/residential-care.html

Shop on line for aids

Go online for help in the kitchen, bathroom, bedroom, home living, mobility, and sensory, everything you can imagine:

Mobility Centre www.mobilitycentre.co.nz

Independent Living www.ilsnz.org/Products

Mental Health

Having ANCA vasculitis, a chronic disease, can cause depression and anxiety

What do you do, if you are at a crisis point?

If you are at a crisis point, where you are considering taking your own life, it’s really important you have access to immediate support. You can contact 1737, which is a free national mental health support line where you can talk or text with a trained counsellor anytime (call or text 1737).

Well-being services in general practice (GP)

Hundreds of general practices (where you see your doctor or nurse) have new team members. They can support you and your whānau to improve your mental and physical health and wellbeing.

New general practice team members include Health Improvement Practitioners (HIPs), Health Coaches and Support Workers. Although they may have other names at your general practice.

These new team members work alongside your doctor and nurses and their services are free for enrolled patients. They help your general practice team deliver a wider range of mental wellbeing supports and tools.

Support is available without long waits, often on the same day.

What you can get help with

Wellbeing is a spectrum and your thoughts, feelings, and behaviours can affect it.

These free services (through the Access and Choice programme) are designed as early intervention - to prevent problems from building up. So the best time to reach out is now, as soon as you start to feel that you’d like some help.

Services are tailored to you but could include help to:

• 
  improve your mood (you may be feeling down, angry, confused, exhausted)
  

• change habits to reduce the harm of drinking or drug use
  

• understand how what you’re doing can impact how you feel
  

• improve your ability to cope with life’s challenges (building on your existing coping skills)
  

• learn tools to help you sleep better and address other physical health issues that are impacting your mental wellbeing
  

• talk about things that are bothering you – relationships, grief, loneliness, or family violence
  

• talk through the impacts of living with long-term health conditions or a disability and make adjustments so you can live well with these challenges
  

• increase connection to the positive supports in your life, helping you to feel less alone
  

• get connected to services in the community.
  
  

No formal referral

This support is available to anyone, of any age, enrolled at a participating general practice. There are no referral criteria. You can get help with any issue that is negatively impacting your health and wellbeing.

Your doctor can often introduce you to the Health Improvement Practitioner (HIP) or Health Coach on same day you see them. Even if the HIP or Health Coach is only in the practice part time you shouldn’t have to wait more than a few days to see them. Contact your general practice to find out the best way to get seen by the HIP, Health Coach or Support Worker.

Not all general practice teams are part of the Access and Choice programme. So they may not have the HIP, Health Coach and Support Worker roles at the practice you’re enrolled at.

Even if your general practice is not yet part of the programme, GPs and practice nurses are trained to recognise and respond to issues regarding mental wellbeing including alcohol and other drug issues.  There are a range of support and resources available for all New Zealanders, both in-person and online. Talk to your GP about what options would best suit your needs.

Services are free

It’s free to see the HIP, Health Coach or Support Worker.

You may need to see your doctor first, and the normal charge for this will apply. Your HIP, Health Coach and Support Worker will work closely with your doctor, but you won’t have to see the doctor (and pay) before follow-up visits.

How it works

The team will work with you to understand your wellbeing needs and provide practical support. You can see them on your own, with your partner or your whānau. They may also offer group sessions.

Health Improvement Practitioner (HIP)

HIPs are experienced mental health clinicians who work with people of all ages and their whānau. They help people with any issues impacting on their health and wellbeing.

Sessions are brief (15-30 minutes) and focus on what is important to you, today. At your first session you will get some strategies and a plan to start making some positive changes. There are no limits to how often you can see the HIP. They will work with you until you are making progress towards your goals. This may only take one session, but you can always come back and see them again if new issues come up.

Health Coach

Health Coaches are not registered health professionals, but they are trained in Health Coaching and work as part of your general practice team. They help you gain the knowledge, skills and confidence to better manage your health. This can include helping you set yourself health goals and supporting you as you work towards them.

Health Coaches may also help you and your whānau find resources in your community/online to support your social, emotional and physical wellbeing. They will support you over time to make progress towards your goals.

Support Worker

Support Workers are based in the community and can help you with anything that is having an impact on your wellbeing. This could include visiting you in your home or connecting you to wider services in the community such as housing or social support. It could include providing cultural support.

Sometimes the Health Coach and Support Worker roles are combined.

Getting in touch

You may have questions about what happens when you reach out to a provider. Once you get in touch, they will explain how their services work and answer any questions. Or they may have this information on their website.

https://www.wellbeingsupport.health.nz/available-wellbeing-support/wellbeing-services-in-general-practice

If you prefer just to talk to a someone living with ANCA vasculitis, call Dianne Purdie on 04 479 5548