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One of a kind service helping MND sufferers at home

19 December 2019

Queensland’s only community-based service for patients with Motor Neurone Disease is reducing unnecessary admissions to hospital through the team’s home visitation service which gives staff direct insights into the disease journey for these clients.

Chronic Disease Brisbane South (CDBS) is a one-of-a-kind service that works closely with the Respiratory Department at Princess Alexandra Hospital and has become unique, highly sought after and most effective in directly addressing the needs of MND patients.

CDBS Clinical Nurse Consultant, Lois Quick, said the goal of the service is to provide ongoing support in managing clients and their families through the changes as their MND condition deteriorates.

“MND is a fatal progressive neurological condition with an average life expectancy of 2-5 years, the trajectory can be highly unpredictable, so the need was identified that clients required monitoring, support and proactive management to pre-empt the changes from their disease.

“Our clients are unique in that things can progress and change quickly so working alongside them in the community allows us to identify issues early and them the freedom to express their issues which helps us to intervene promptly,” she said.

This cohort of patients were previously required to come into hospital regularly for routine medical  maintenance of their condition, however the team now triage the hospital MND clinic so that patients only attend if they have a medical need that requires addressing, enabling them to remain at home rather than come into hospital which can be extremely difficult, especially as their disease progresses.

“Chronic Disease Brisbane South now offers patients this cohesive, one-stop-shop service in the community setting and at home with our highly trained multidisciplinary team.

“In conjunction with the PA Nurse Navigator for gastrostomy and tracking, we are now able to perform the gastrostomy tube changes in the comfort of their home rather than clients having to come into hospital for this short, but necessary procedure,” she said.

The highly sort-after team have just returned from presenting at the 30th International Symposium on Motor Neurone Disease.

“The neurology team utilises this service for all their patients with MND being confident that they will be managed in a highly skilled manner enabling   patients who, in most cases, would prefer to be at home with their families.”

The team have been able to avoid hospital admissions by regular monitoring, being available, assessing safety and ordering equipment prior to the need arising, arranging home modifications early, assessing respiratory and dyspnoea requirements, as well as advocacy for early gastrostomy insertion to reduce client and carer distress.

“We are the only multidisciplinary community service in the state who manages clients throughout the whole of their journey from referral through to end of life within the community,” she said.

“It offers all of us real meaning to be available for our patients on their disease journey.”

Last updated 21 January 2020
Last reviewed 19 December 2019

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