In 2011 Ruth was one of the first members of a new team established to set up the South Wales Motor Neurone Disease Care Network. Under her leadership it has grown into a vibrant and highly engaged community, with palliative care and a commitment to equity at its core. For Ruth this is the best job she has ever had as it allows her space to be creative and develop ideas to constantly improve the experience of care given by the service.
Prior to the establishment of the new network, the needs of many people affected by MND were not being met and they were suffering great inequities, particularly at the end of life. Without the necessary resources, the local palliative care teams and expert neuroscience services were unable to provide the care they wanted to. Ruth analysed the limitations of existing approaches and quietly pioneered a radical and compassionate way of assessing and addressing the needs of people with MND and their families. In doing so she facilitated these two services to collaborate in developing an effective and sustainable model of care.
With Ruth at the helm providing facilitation and support, the network now has a core base of 60 members working in 12 multi-disciplinary teams, supporting approximately 1000 health and social care colleagues across South Wales.
Ruth is convinced that this success has been achieved by pooling resources and collaboration. She adds: “The whole is greater than the sum of its parts and teamwork is essential. So we really work together and support each other.”
What drives you to make a difference?
Ruth is driven by the inequity in the system that affects MND patients and their families. Seeing unmet need, she has advocated and worked tirelessly for the positive change that now sees nurses, doctors and therapists proactively meeting their needs rather than always being one step behind.
She demonstrates the spirit of compassion in everything she does, relentlessly seeking ways to meet the needs and wishes of patients and their families, living by the philosophy that the patient is the expert in their own lives.
Ruth is a great connector and communicator, able to open doors in health board headquarters across the region and somehow finds ways to get them to do what people need, steadily squeezing growing funding from a shrinking pot.
Under Ruth’s leadership the MND service has grown and become more sustainable. She appreciates the power of data and has used such evidence to promote her case of a more improved service with good effect. She is inspirational in her leadership and is a strong voice for excellence in care. Ruth challenges unacceptable care and will work for a solution within the system e.g. one bank holiday weekend a patient was told they would have no personal care for four days. Ruth ensured this was reversed! Ruth has also overseen the establishment of carers groups which are amazingly well attended and, through that, has developed a strong commitment to hearing the voice of the users in any service development plans.
A key component of Ruth’s role is to support colleagues to understand and accommodate the notion that people are the experts in the own lives; they are permitted to make unwise decisions and the role of the professional is to support them whilst understanding there may be a risk to manage.
How do you encourage excellence in care?
The best way Ruth knows to encourage excellence is by example. Neither her title nor badge contain the words ‘palliative care’, but the ethos of palliative care is writ large in everything she does. Her whole approach is defined by patient needs. Any nurse following Ruth’s lead in talking far more to her patients and their families, rather than colleagues, couldn’t fail but be encouraged to provide excellent care.
In fact, Ruth doesn’t just set this example, she also fearlessly stands up to those not driven by the same motivation.
To enable the proactive approach that has been instrumental in transforming the level of care for people with MND and their families in South Wales, Ruth has also employed a data-driven approach to understand what improvements need to be put in place. She has also established learning days to help increasing numbers of professionals get on board with her proactive, palliative approach.
Ultimately, Ruth believes, her role is to enable people to enjoy the best life they can in the time they have remaining. She has this message for what she believes her nursing colleagues should be focusing on: “Helping people have quality of life, no matter how dire the circumstances. There is always something we can do to make it better.”