This year, the Neurological Council of WA celebrates 30 years of neurological community service - a milestone that we are so very proud to share!
Let's take a look at some of our history highlights...
The Neurological Council of WA commenced as a consortium that worked together to garner support for a purpose-built building to house neurological organisations. The consortium aimed to leverage opportunities to better support and service the large and diverse neurological community. Led by then President, Ian Passmore OAM, the Neurological Council was incorporated on 24 July 1992 as the peak body for neurological organisations and people living with neurological conditions in Western Australia.
The Neurological Council secured Lotteries Commission funding to open its first 120sqm office at 320 Rokeby Road, Subiaco, alongside affiliated neurological organisations including the Australian Brain Foundation, Parkinson’s Association, Motor Neurone Disease Association, Neurofibromatosis Association and Tourette Syndrome Association. They worked closely together and pooled office resources, knowledge and efforts to promote common and individual goals within the neurological sector.
Lotteries House - The "community hub of neurological activity".
The Neurological Lotteries House was opened by the Premier in 1994. As the Council and the number of members grew, and the success of the Neurological Lotteries House became apparent, there were growing calls for a purpose-built building. Ian Passmore reviewed international models of community neurological support including visiting the Neurosupport Centre and the Walton Centre for Neurosciences in Liverpool. He returned to WA with a vision of developing a community hub of neurological activity with a close and collaborative relationship with acute neurological services. This aim was well supported by the membership as they recognised the opportunities afforded by a collaborative, partnership approach.
In 1995, the Neurological Council secured Home and Community Care (HACC) funding to employ care coordinators/advisors. Staff provided needs assessment, health navigation, information and advocacy, and sourced personal care, social support, counselling and respite care for people with neurological conditions and their carers in the metropolitan area.
In 1997, the Neurological Council sourced funding for its first Neurological Expo in Watling Street at Sir Charles Gairdner Hospital (SCGH) involving 23 organisations with newly created commercial grade displays. The Expo was officially opened by the Minister for Health, SCGH Neurological Unit Head, Lotteries Commission CEO and Neurological Council President. The opening was attended by more than 200 people with an estimated 6000 expo visitors and attendees at the concurrent 5-hour lecture series with presentations from neurological/care organisations and key clinical and research leaders in neurological disorders. The annual Expo became the platform for launching the campaign for a new building.
The Niche - A new home at the QEII Medical Campus
In 1999, the Lotteries Commission favourably considered a new and expanded Neurological Lotteries House. The Neurological Council convened meetings with its 25 member organisations to agree a building planning brief. A site in Subiaco was identified and the Lotteries Commission provided an architect to develop a feasibility study for a new building.
The feasibility study began as a coalition proposal with The Cancer Foundation and the Heart Foundation but did not proceed due to funding complexities. After many discussions and a 15-month search for a building site, the Neurological Council gained QEII Medical Centre Trust and Lotteries Commission support for a shared facility with the Cystic Fibrosis Association and Independent Living Association. Hames Sharley was appointed as architects. David McGrath, who had been the UWA Chief Engineer and a Neurological Council Board member, became our ‘clients’ representative’ in the planning process. The final plan included common facilities, disability friendly event spaces and external terraces and gardens to house member neurological organisations, families and carers and those they care for.
2001: The Neurological Council services expanded across the Great Southern, South West, Mid West, Wheatbelt and metropolitan regions employing the Neurocare generic Community Neurological Nurses (CNN).
2002: the Neurological Council and 16 affiliated organisations moved into the new, purpose-built Lotterywest-funded building. The Niche is built on land provided by the QEII Medical Centre Trust with a 30-year lease until 2031. The Neurological Council became the lead tenant for the Centre for Neurological Support—the primary contact for the neurological community and a thriving hub of activity, collaboration and partnership.
2007: renowned neurosciences researcher and neuroanatomy author, Professor Charles Watson, joined the Neurological Council Board and was appointed Chairperson in 2009.
2010: UK Neurology Nurse Practitioner, Adjunct Associate Professor Kathleen (Kathy) McCoy was appointed Executive Director of the Neurological Council, bringing with her a wealth of knowledge and experience. Over the next decade, Kathy reshaped our state’s community neurological nursing landscape.
With seed funding from the Nursing and Midwifery Office, the Neurological Council developed a Postgraduate Certificate in Community Neurological Nursing. This course was delivered by Murdoch University from August 2011 to December 2012.
2011 - 2015: The HACC service evolved to exclusively employ CNN to deliver services. The Neurological Council established the Community Neurological Nurse Network community of practice and played a key role in international benchmarking activities on the development of community neurological service models and led and funded an early epidemiological project.
2012 to 2013: The Neurological Council led the trial of its inward–outward model of community neurological support at a regional hospital. This project was the precursor to work in the non-admitted outpatient space (McCoy & Chan, 2016). The model of care drew on the hub-and-spoke neurology model of The Walton Centre in Liverpool, UK, where advanced neurology nurses, based in the community with links into hospitals, support patients with a wide range of neurological conditions.
2015: The Neurological Enablement and Advice Track (NEAT) Model was developed, an innovative, equitable model which utilised existing resources including the Centre for Neurological Support.
The launch of Neurocare
2016: The Neurological Council successfully introduced its inward-outward nursing service, known as Neurocare, at a metropolitan public hospital in a collaborative research project with Murdoch University. Neurocare provides an integrated care pathway between hospitals and the Neurological Council and facilitates the discharge process. Memorandum of Understanding are in place at four metropolitan and three regional public hospitals for the provision of Neurocare.
This nurse-led model of transitional care was found to produce cost savings and a positive return on investment compared with usual care at Fiona Stanley Hospital; it also reduced patients’ service needs and increased their functional status and health-related quality of life (Pugh et al., 2021). The model of care also provided the template for the Aboriginal brain injury coordinator role trialled in WA (Armstrong et al., 2021).
The Neurological Council partnered with the WA Country Health Service in 2016 to successfully establish and trial TeleNeurocare services delivering Neurocare consultations via telehealth to Wheatbelt stroke survivors and their carers. TeleNeurocare was subsequently rolled out across WA; community neurological nursing was delivered face-to-face and telehealth follow-up consultations in accessible regions and exclusively via telehealth for rural and remote regions.
2020: The Covid-19 pandemic significantly disrupted the world putting pressure on hospitals and health professionals. Relatively sheltered from the virus in WA, the Neurological Council continued to provide critical community neurological nursing and navigation services via telehealth and TEAMS, including visits with full personal protective equipment for the most at-risk patients. Clients surveyed during this time found the telehealth system provided a healthcare service and interaction similar to in-person consultations with our nurses.
November 2021: The Neurological Council’s long-time Executive Director, Kathy McCoy, passed away from a neurological disease, leaving Neurocare and the NEAT model as her legacy. Former Board member, Etta Palumbo, joined as CEO and has worked with the Board to create a new vision and 3-year strategic plan for a post-pandemic world.
Today, the Centre for Neurological Support houses 12 organisations including:
- Attention Deficit Hyperactivity Disorder WA,
- Epilepsy Association of WA, Huntington’s WA,
- ME/Chronic Fatigue Syndrome Society WA,
- Huntington's WA,
- Meningitis Centre Australia,
- Muscular Dystrophy Association of WA,
- Neurofibromatosis Association of WA,
- Parkinson’s WA,
- Stroke Foundation and
- The Neurological Council of WA
The Neurological Council remains the centre’s lead/managing tenant for the Niche, along with Cystic Fibrosis WA and Indigo Australasia. With less than 10 years remaining on our lease, we are starting to explore the future of neurological community activity and infrastructure requirements.
References:
Armstrong, B., McCoy, K., Clinch, R., Merritt, M., Speedy, R. McAllister, M., Heine, K., Ciccone, N., Robinson, M. & Coffin, J. (2021). The development of Aboriginal brain injury coordinator positions: A culturally secure rehabilitation service initiative as part of a clinical trial. Primary Health Care Research & Development, 22(e49), 1–9. https://doi.org/10.1017/S1463423621000396
McCoy, K. & Chan, H. (2016). A neurological integrated care pathway. Australasian Journal of Neuroscience, 26(1), 1–6. https://doi.org/10.21307/ajon-2017-125
Pugh, J.D., McCoy, K., Needham, M., Jiang, L., Giles, M., McKinnon, E. & Heine, K. (2021). Evaluation of an Australian neurological nurse-led model of postdischarge care. Health & Social care in the Community, 30(4), e962–e973. https://doi.org/10.1111/hsc.13...