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Health advocacy and self-help

by Rosemary Du Plessis and Anne Scott

Health-advocacy and self-help groups assist people with all kinds of diseases and health concerns, from cancer to haemophilia, women’s health to addiction. Advocates promote the rights of health consumers. Some people join self-help groups and share their experiences.


Development of advocacy and self-help

Health advocacy

Health advocacy involves promoting the needs and rights of people who use health services. Advocates may also support people who make complaints about their treatment. These activities are often carried out by non-profit organisations which focus on particular illnesses or conditions, people living in a defined area or specific ethnic groups.

Health-advocacy organisations have operated since the 19th century. Many early groups focused on disability issues. These include:

  • the Jubilee Institute for the Blind (established in 1890 – now Blind and Low Vision NZ)
  • the Crippled Children Society (established in 1935 – now CCS Disability Action)
  • the Intellectually Handicapped Children’s Parents’ Association (established in 1949 – now IHC).

Other major organisations which started in the 20th century include the Plunket Society (1907), the Cancer Society of New Zealand (1929), the Haemophilia Foundation of New Zealand (1958), the Heart Foundation (1968), the Mental Health Foundation of New Zealand (1977), Alzheimers New Zealand (1986) and the Breast Cancer Foundation (1994). In the 21st century new health advocacy organisations include the New Zealand Organisation for Rare Disorders (2000) and the Breast Cancer Aotearoa Coalition (2004), which is run by breast cancer survivors.

The Nationwide Health and Disability Advocacy Service was set up in 1996 and is funded by the Office of the Health and Disability Commissioner. It has community-based offices throughout New Zealand and is governed by an independent trust that is contracted to provide advocacy services. This state-funded service exists alongside the work of many non-governmental organisations engaged in health advocacy for people with particular health conditions and their families.

Twenty-first century health advocacy groups include those who campaign for the legalization of medicinal cannabis for use by those seeking pain relief. In December 2017 the government introduced the Medicinal Cannabis Bill which is directed at making medicinal cannabis more accessible for those who are dying or living with chronic pain. 

Local health advocacy organisations often develop with the support of national organisations. An example is the Christchurch Mental Health Education and Resource Centre (MHERC), which was set up in 1994 with the support of the Mental Health Foundation to connect mental health community groups and share resources. After the 2010–2011 Canterbury earthquakes it assumed particular responsibilities to support community-based mental health advocacy in the region and ran ‘building resilience’ and ‘wellbeing’ workshops. 1

Public health activists have also highlighted barriers to indigenous health and advocated for the provision of health services that are consistent with commitments to the Treaty of Waitangi. Responses to concerns about Māori health includes the development of iwi and marae-based primary health services in many parts of New Zealand and the development of health promotion material specifically aimed at Māori health consumers. Māori health advocacy has contributed to recognition by the Ministry of Health and district health boards (DHBs) that Māori organisations can make unique contributions to the health of their communities.

Self-help

Some people group together to manage their health instead of always relying on medical professionals. Face-to-face mutual support is the most important purpose of these self-help groups. People argue that they have the right to make their own choices about health care by acquiring knowledge of their bodies and health conditions. Many self-help groups also aspire to change government health policies.

Though the general concept of self-help was not new, it gained fresh currency in the 1970s when feminist groups challenged the power of doctors and criticised the promotion of new drugs and medical technologies by pharmaceutical companies. In self-help groups women could learn about their bodies and alternative treatments, which could be managed themselves or by others. These groups could also empower women when they dealt with medical professionals.

Alternative health therapies and remedies are other forms of self-help which became more popular from the 1980s. Most remedies are classed as food products rather than medicines, allowing consumers to purchase them without a prescription.

Peer support services

In the early 21st century aspects of a self-help approach to heath has led to organised peer support services. This involves health consumers being trained to provide support for others with their condition, or to support parents or other family members of children with challenging health conditions. 

In the mental health sector peer support services are increasingly receiving public funding. All DHBs in New Zealand now fund some form of peer support for mental health service users. Peer supporters have experience of a diagnosed mental health condition as well as being providers of a service to others. Most peer supporters work for community-based organisations that are often consumer-led. They complete training in peer support before they offer support to others and focus, not on ‘fixing’ people, but listening, ‘walking alongside’ their peers, and helping them to overcome challenges. 2

Web wisdom

The internet is a source of direct information on health topics in the 21st century. A 2012 survey found that 50% of respondents used the internet for information on health services. Women were more likely to use the internet for health information than men and people aged 25 to 44 were most likely to use the internet to access information about health services.

Patients’ rights

Since the 1980s people using health services have often been described as consumers rather than patients.

As consumers, people have more clearly stated rights, and more input into their health care, than patients in the past. The 1987–88 commission of inquiry into the treatment of cervical-cancer patients at National Women’s Hospital in Auckland, conducted by Judge Silvia Cartwright, contributed to this change. Her report led to a number of initiatives, including an independent Health and Disability Commissioner, a national patient advocacy service and a code of patient rights.

Non-profit organisations, 21st century

By the 21st century a wide range of health disorders and sectors of the community were represented by non-profit organisations. Many were started by small groups of volunteers, usually with the aim of providing health or support services, and were maintained as informal organisations. Others gained funding from sources such as DHBs, charitable trusts or pharmaceutical companies, and grew into larger, more formal organisations with management boards and paid staff as well as volunteers. Some organisations were national in scope; others were regionally organised, especially if funded by DHBs.

Māori health providers, whether iwi or urban marae-based organisations, increasingly provide culturally appropriate preventative and primary health care for specific health consumers. From the 1990s community-based Māori providers have contracted with DHBs to provide health services on marae or in other community settings. Often their services respond to the needs of Pacific Islands health consumers as well as Māori. These services include well-child clinics and immunisation, but also cervical screening, smoking cessation and healthy eating programmes. Many of these clinics offer mirimiri (massage) and rongoa (traditional medicine). 

Footnotes

Women’s and men’s health organisations

Women’s Health Action

Feminist activists Phillida Bunkle and Sandra Coney started a health advocacy group called Fertility Action (FA) in 1984. For many years they had tried to get the injection-based contraceptive Depo-Provera banned. They argued that women using it experienced serious and unacceptable side-effects.

After FA was formed the group turned its attention to an IUD (inter-uterine device) contraceptive called the Dalkon Shield. Women who used it – in particular those who had never been pregnant – were at high risk of developing pelvic inflammatory disease, a condition associated with infertility. FA lobbied the Department of Health, and the contraceptive was eventually withdrawn from use.

From 1986 FA campaigned on a wider range of women’s health issues, including cervical-cancer screening, hormone replacement therapy, cosmetic surgery and improved access to medical records.

The group and its founders are best known for a 1987 Metro magazine article about the treatment of cervical cancer patients at National Women’s Hospital in Auckland, which led to a commission of inquiry, overseen by Judge Silvia Cartwright. FA has played a major role in drawing out wider issues, such as the lack of institutional protection for patients.

In 1993 FA changed its name to Women’s Health Action to better reflect its range of activities. In the early 21st century the organisation produced health information, ran an information line and supported health consumers’ rights. It lobbied health officials and advocated institutional changes to the health system.

Women’s Health Information Centre

The Women’s Health Information Centre in Christchurch provided free health information and services to women. It was started as The Health Alternatives for Women (THAW) in 1980 to promote safe contraceptives, support the establishment of Lyndhurst Hospital (which provides abortion services) and lobby for improved patient rights. Its name was changed to the Women’s Health Information Centre in 1999. The centre closed in 2012 after the office was seriously damaged during the 2011 Christchurch earthquake.

A good bollocking

In 2008 a Wellington street called Old Bullock Road was mistakenly signposted by the city council as ‛Old Bollock Road’ – bollocks being a colloquial word for testicles. The signpost was donated for fundraising purposes to the Prostate Cancer Foundation of New Zealand, who sold it on Trade Me, the online auction website, for $805.

Endometriosis New Zealand

One in ten women suffer from endometriosis – an inflammatory disease that affects tissue found outside the uterus/womb which is similar to tissue in the uterus. Those with endometriosis experience period pain and pelvic pain and it can also be associated with infertility. Endometriosis New Zealand began in 1985 as a support group for women in Palmerston North with this painful and difficult to diagnose condition. It is now a registered charitable trust that sustains a national support network. This health foundation provides information, offers services and advocates for those with endometriosis, while also continuing to facilitate peer support for girls and women.

Breast Cancer Aotearoa Coalition

In 2004 a dozen different breast cancer organisations formed the umbrella organisation Breast Cancer Aotearoa Coalition (BCAC). It now includes 32 organisations and is run by breast cancer survivors for those with breast cancer. It provides a variety of forms of information about breast cancer, including web videos as well as working with clinicians on issues relating to the management of early breast cancer. BCAC makes submissions to government, the Pharmaceutical Management Agency (PHARMAC) and to district health boards. Representatives of the organisation meet with ministers of health and Ministry of Health officials on a regular basis to highlight the needs of those diagnosed with breast cancer and advocate for the public funding of innovative forms of treatment. 

Prostate Cancer Foundation of New Zealand

The Prostate Cancer Foundation of New Zealand was founded to provide support and information services for men diagnosed with prostate cancer, and educate the wider community about the disease. There are 25 support groups throughout New Zealand. The Foundation organises the Blue September campaign each year to raise awareness about prostate cancer and money to fund their work. It also provides peer support for men diagnosed with prostate cancer and it is a strong advocate for men with prostate cancer having access to information about a variety of treatment options.

Men's Health Trust

The Men's Health Trust charity set up the Men's Health website in 2007. It focuses on a range of men’s health issues, including their mental health. Men’s Health does not provide services, it is an information hub for men’s health rather as THAW was a source of information on women’s health. The goal of the trust is to change how New Zealand men view their health and to make them more aware that they can get effective help as soon as possible.  


Genetic disorder organisations

Haemophilia Foundation of New Zealand

The New Zealand Haemophilia Society was founded in 1958. At first it was run by volunteers and assisted by a medical advisory board. As the society developed, it adopted a more formal structure with several paid staff and a volunteer governance board. It has received funding from several sources, including District Health Boards, pharmaceutical companies and other corporate sponsorship, and public donations.

Blood ties

Haemophilia is a bleeding disorder – blood cannot clot properly, which means that bleeding takes a long time to stop or can only be stopped through intervention. Haemophilia is much more common in men because it is a sex-linked disorder, and is typically passed down by women to their male children. The most famous sufferers are the descendants of Queen Victoria – one of her sons had the disorder and her daughters passed it to many of the royal families of Europe through intermarriage.

The society, which later changed its name to the Haemophilia Foundation of New Zealand (HFNZ), provides support and advocacy services including outreach workers, camps for those with haemophilia and their families, and financial assistance to meet tutoring costs for children who miss school due to the illness.

HFNZ has been involved in some high-profile issues. When many people with haemophilia were infected with HIV after receiving contaminated blood in the 1980s, HFNZ campaigned for the provision of New Zealand-derived, safe, heat-treated blood products. It engaged in legal action to ensure infected people received payments from the Accident Compensation Corporation (ACC).

Similar action was taken when sufferers were infected with Hepatitis C. In 2006 the government announced a compensation package for people infected with this disease through contaminated blood products.

Multiple Sclerosis Society of New Zealand

The Multiple Sclerosis Society of New Zealand (MSNZ) was founded in 1967 and in 2018 there were 18 autonomous regional branches throughout the country. Fieldworkers supported those with Multiple Sclerosis (MS) by organising exercise classes and social gatherings. The society also offered educational scholarships and awards for MS sufferers and carers. It funded research programmes and liaised with central government about relevant health issues.

Huntington’s Associations of New Zealand

Three Huntington’s Associations were founded in Auckland, Wellington and Christchurch in 1980 to support people with Huntington’s disease. Later associations were formed in other parts of the country. In the 21st century all the groups were autonomous, but they pooled resources to organise national events. Some were formal organisations with paid employees; others were more informal and relied on volunteers. Some funded fieldworkers who ran support programmes for sufferers and others lobbied the government to provide care homes for people who became too ill to live in their own homes.

New Zealand Organisation for Rare Disorders

The New Zealand Organisation for Rare Disorders (NZORD) was founded in 2000 to help people suffering from rare genetic disorders and their families to find essential information about their conditions. NZORD also ran support groups, provided information on care options in the public health system and monitored relevant government policies. It brings together clinicians and those living with rare disorders to share information and experiences and lobbies for funding for treatment.


Mental-health and addiction organisations

Mental Health Foundation of New Zealand

The Mental Health Foundation of New Zealand was founded in 1977 to support positive early life experiences as a way of establishing good mental health. Later the organisation widened its scope and promoted the mental health of all New Zealanders. It was an advocate for rights and welfare, and from 1977 to 1986 provided grants to other groups working in this field. In the 21st century the foundation provides a resource and information service and organises public campaigns designed to end discrimination.

Aotearoa Network of Psychiatric Survivors

Auckland Psychiatric Survivors (APS) was founded in the mid-1980s. It was a self-help group for people who had used mental-health services, and an advocate for mental-health consumers in general. In 1990 APS member Mary O’Hagan and Pauline Hinds of Dunedin established the Aotearoa Network of Psychiatric Survivors (ANOPS), which provided a national voice on issues concerning mental health. ANOPS was involved in advocacy work on behalf of mental health patients at a time when psychiatric hospitals were being shut down and patients moved into the care of the general community. It was dissolved in 1998 after the government stopped funding its work.

Mental Health Commission

The Mental Health Commission is a Crown agency, usually led by three commissioners, which provides the government with independent advice on mental-health and addiction services in New Zealand. It was established in 1998 on the recommendation of Judge Ken Mason, who headed an official inquiry into New Zealand’s mental health services. Aotearoa Network of Psychiatric Survivors founder Mary O’Hagan was a mental-health commissioner from 2000 to 2007. The Commission produced its Blueprint for mental health services in New Zealand in 1998 to help improve health care services. In 2012 it published Blueprint II which outlined strategies for better service provision between 2012 and 2022. The Commission was disestablished later that year. In January 2018 the government announced a ministerial inquiry into mental health and addiction chaired by the former Health and Disability Commissioner, Professor Ron Paterson. The government has indicated that the Mental Health Commission will be re-established after this inquiry.

National and regional self-help groups

In the 2010s regional mental-health organisations were found throughout New Zealand. Examples included Health Action Trust (HAT), a Nelson-based organisation which offers peer advocacy and a peer-run crisis house, and Richmond Community Trust in Christchurch which provided community-based support services for people diagnosed with severe mental illness. Richmond Community Trust merged with Recovery Solutions to form Emerge Aotearoa, a nation-wide organisation which offers in-community care for those with complex mental health needs. Mind and Body, which provided peer support services in Auckland and Christchurch, merged with Emerge in 2015. Te Awa o Te Ora is a Christchurch-based kaupapa-Māori mental health service which is affiliated to Te Rūnanga o Ngā Taura Here ki Te Waipounamu and He Oranga Pounamu.

Addiction organisations

Alcoholics Anonymous New Zealand was founded in 1946, based on an American model. It is the best-known addiction support and self-help group. Members follow a recovery programme and meet regularly to share stories about their addiction. In the 2010s there were over 400 separate groups meeting weekly throughout New Zealand. Narcotics Anonymous facilitated meetings for people in recovery from drug addictions.


Child health organisations

Plunket

Plunket, which was founded in 1907, is the best-known child health organisation in New Zealand. It provides free health services for children from birth to five years and also engages in advocacy work, such as lobbying the government on wider issues which affect children. In the early 21st century Plunket supported the repeal of Section 59 of the Crimes Act 1961, which meant that parents could no longer use the defence of ‘reasonable force’ with respect to child discipline cases brought to the court. They also lobbied for a total ban on cigarette and tobacco advertising.

Paediatric Society of New Zealand

The Paediatric Society of New Zealand (PSNZ) is an organisation for medical professionals working in child health. It was founded in 1946, and some of its aims were to promote the health and welfare of New Zealand children and advocate for them on all issues relevant to their health. In the 21st century PSNZ made submissions to the government on topics such as access to medicines, childhood obesity and child discipline.

Child Cancer Foundation

The Child Cancer Foundation (CCF) is a high-profile child-health organisation which was started in Auckland in 1978 by a group of parents and health professionals. CCF is primarily a support organisation for children with cancer and their families. Paid coordinators provide one-on-one support services and also facilitated group meetings for the families.

Heart Kids New Zealand

Heart Kids New Zealand provides support for children with heart problems and their families. In 1983 two Auckland women, Linda Davies and Michelle Mann, published a book called Heart children after their newborn babies died from heart problems. They supported other families going through the same experience and a network of support groups was established. In 2015 the name of the organisation was changed from Heart Children to Heart Kids New Zealand. It is based in Auckland with regional branches throughout New Zealand providing peer-to-peer support.

Neonatal Trust

The Neonatal Trust was established in 1986 by two Wellington families who had premature babies. It became a nation-wide organisation in 2008 which supports families with babies in neonatal intensive care units in the main centres and special care baby units in provincial centres. It relies heavily on volunteers who have had the experience of using neonatal units who provide support for new parents. It offers practical support to neonatal units and also raises funds for neonatal medical research.

Child Poverty Action Group

The Child Poverty Action Group (CPAG) is an advocacy organisation which aims to eliminate child poverty in New Zealand by 2020. Child health is a major focus of its work. According to the Child Poverty Action Group, 10% of children who attend low-decile schools – those in lower socio-economic areas of New Zealand – are regularly hungry. Hunger in childhood has been linked to problems with food and weight in later life. CPAG has lobbied for the provision of free breakfast and lunch programmes for schools in lower socio-economic areas, and for free health care for all children aged 18 and under.


Hononga, rauemi nō waho

More suggestions and sources


How to cite this page: Rosemary Du Plessis and Anne Scott, 'Health advocacy and self-help', Te Ara - the Encyclopedia of New Zealand, http://www.TeAra.govt.nz/mi/health-advocacy-and-self-help/print (accessed 19 November 2019)

He kōrero nā Rosemary Du Plessis and Anne Scott, i tāngia i te 5 May 2011, reviewed & revised 17 Jul 2018