Wow what a day! The MND clinic girls from Notts have been inspired with what we have heard today. Amber Ward OT from USA and Mel Holmes OT from Australia, talked about the wonders of velcro for example how to secure your communication aid to your lap to prevent it slipping . They also described how a wireless door bell can be used to alert a carer if help is needed. Mel and her colleague in Melbourne, work to provide support for people using non invasive ventilation (NIV) allowing them to remain as independent as possible. She highlighted mask management, communication, pressure injuries and community independence as factors which effect compliance with NIV.
The importance of caring for ourselves when caring for others was a subject discussed by Renee Bricker speech-language pathologist form the University of Virginia. She asked if mindfulness practices improve compassionate care to our patients or people living with ALS and prevent burnout of health professionals. Kabat-Zinn defines mindfulness as ” the awareness that emerges through paying attention, on purpose, in the present moment, and non-judgementally to the unfolding of the experience moment by moment”. She gave us examples of formal and informal practices and suggested ways in which it could be incorporated into the clinical setting. She shared with us a simple technique – STOP.
Stop and mentally step back
Take a deep breath and smile
Observe what your body is doing
Malabika Ghosh OT from Preston UK highlighted research which suggests that some form of cognitive impairment can be identified in up to 50% of patients diagnosed with MND. Her study explored the patient and caregiver perspectives on decision making. She described the importance of assessing cognitive function in all patients diagnosed with MND. This is important as patients with cognitive impairment have been shown to be less compliment with interventions and this affects caregiving.
Melanie Lord from Oxford introduced us to their ‘traffic light’ tool used in assessing respiratory risk and guiding decision making for enteral nutrition. Risk is determined according to respiratory function. Appropriate management pathways can be implemented to support gastrostomy insertion. It was recommended that early discussion around gastrostomy was key.
Our first evening concluded by joining the delegates networking event.