Improving palliative care for people with motor neurone disease is more urgent than ever
A blog post written by Tracey Watters, Palliative Care Pathways & Partnerships Project Coordinator, Motor Neurone Disease Association of South Australia (MND SA)
A lack of clear referral pathways; access to allied health services; and affordable transport, aids, and equipment compounds the difficulties imposed by Motor Neurone Disease (MND) for people who live away from major centres. [1]
MND is often difficult to diagnose; creates significant physical, emotional, and financial burdens; and can be complex to manage. Research indicates the provision of timely support and clear navigation pathways through the system, whether from a specialist or non-specialist clinician, improves the experience of the person with MND and their family as the difficulties of living with and managing the condition are negotiated.
Because it is a typically progressive condition, the person with MND will likely have frequently changing needs for care, assistance, equipment, investigations, and sometimes hospitalisation. In the main, these needs are managed by the individual (and as the illness progresses, increasingly the family or support person) with the help of the general practitioner (GP) in consultation with specialist services.
Availability of support, education, equipment, and respite to assist families and carers who are looking after someone at home with progressive life-limiting illness can feel insufficient. [2] Comprehensive care in the community may be difficult to coordinate and access, with many inclusion and exclusion factors operating as barriers. For example, respite and residential care services are not only difficult to access but may offer an inappropriate environment and staffing levels.
Staff providing these services have indicated they would benefit from specialised knowledge and skills for managing people with MND. In-home care and residential respite service providers indicate they do not have the capacity to provide complex care, including palliative care, which is required as the disease progresses.
Additionally, the Palliative care needs in South Australia report (690kb pdf) commissioned by the state government identified people living in rural and remote SA and those with complex needs such as MND, as often requiring more intensive nursing services, and a wide range of social supports to maintain health and function. [3]
These are some of the reasons why Motor Neurone Disease Association of South Australia (MND SA) has been commissioned by the South Australian Department of Health and Wellbeing to develop and promote the Palliative Care Pathway and Referral Network and provide information and training resources. MND SA will present these as a faxable/printable resource kit and an online experience to facilitate improved information and support for people living with a diagnosis of MND and their care team. Our aim is to support them at right time, right place, and with the right team.
References
- Neurodegenerative and Neuromuscular Conditions Working Group. Care pathways for people with neurodegenerative and neuromuscular conditions, Summary report: diagnostic exercise. Chatswood, NSW: NSW Agency for Clinical Innovation; 2016 Oct 6.
- Mc Veigh C, Donaghy C, Mc Laughlin B, Dick, A., Kaur K, Mc Conville J, et al. Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study. BMC Palliat Care. 2019 Apr 26;18(1):39. doi: 10.1186/s12904-019-0423-8.
- Government of South Australia. Palliative care needs in South Australia (690kb pdf). Adelaide, SA: SA Health; 2019 Oct.