Louise Ebenezer: Empowering patients and professionals through education


Louise Ebenezer, a ward sister by background, ‘fell’ into caring for people with Parkinson’s, though looking back, she has particularly strong memories of the few patients with the condition that she encountered in her earlier career. After a stint teaching nurses overseas, she missed clinical work and applied for an available nursing post, which happened to be that of a Parkinson’s disease specialist nurse (PDNS).

‘I’ve been a nurse for 33 years, 15 of them as a specialist for Parkinson’s – and they’re the best 15 years,’ she says.

Louise has extended her knowledge of Parkinson’s over the years through formal education like the Parkinson’s Nurse MasterClass, but it’s in managing her patients that she has gained the most understanding. ‘I think I have vast experience and then I meet a patient with completely different symptoms and I delve deeper into the condition.’

It’s this hands-on learning that enables her to manage a Parkinson’s dementia clinic alongside two of the local consultant specialists and she will be expanding her knowledge of this element of the condition through the Dementia MasterClass later this year. The complexity of medication combinations that people with Parkinson’s are invariably taking to manage their conditions can be a challenge to mental health practitioners, and Louise and her colleagues prefer to manage them within their specialist clinic. ‘It’s often me that notices a change in them,’ she says of her patients who experience dementia amongst their symptoms. Little differences like a more haphazard approach to their medication-taking or difficulty in processing day to day life can indicate Parkinson’s dementia as much as hallucinations or confusion, and Louise often takes these changes as triggers to talk with them and their families about future changes in lifestyle or to begin discussing their preferences in care for the future.

Working across hospital, the community and people’s homes in her patch, Louise is the only nurse in her locality, and she follows her patients from diagnosis until end of life. She also manages any Parkinson’s patients receiving care in the hospital she works, regardless of their home location. Liaising across the different departments from anaesthesia to pharmacy, Louise prepares advanced plans for any Parkinson’s patient who comes into the hospital for elective surgery whether their stay is related to the condition or not. ‘Managing Parkinson’s patients when they’re nil by mouth can be really complex, so we plan ahead for the just in case scenario – so the information is there as soon as it is needed,’ she explains.

Her time teaching, marking the change from general nursing to specialist, definitely impacted how she approached her career from then on. Louise places a strong importance on learning and is very active in sharing her knowledge with both patients and professionals.

‘We never stop learning’, she says repeatedly. ‘The more we learn, the more we can share with our patients, and the more empowered they are in managing their condition.’

This key principle affects her care, as she delivers educational events for people with Parkinson’s, and both formal and informal education to fellow clinicians and care workers across the Abertawe Bro Morgannwg University Health Board integrated health and social care system she is part of.

Her enthusiasm for learning also spills into national and international programmes. From facilitating and lecturing on the Parkinson’s nurse course run at Swansea University to the European Summer School she runs for European Parkinson’s nurses and the Parkinson’s disease nursing course she runs in sub-Saharan Africa as part of the ‘MDS African Taskforce’, Louise lives her passion for learning through sharing her knowledge and inspiring others to develop their own expertise.

‘The more I learn about Parkinson’s, the more I realise how much more there is to learn and understand,’ Louise says.

This, combined with the confidence that the more she learns the more she can empower others, keeps her motivated. It cannot help but inspire and motivate a similar ethos in all those she meets.

Useful links
'The things you can't get from the books'

Parkinson's Academy, our original and longest running Academy, houses 19 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.