Nicki, an MS Trust Advanced MS Champion in Poole, Dorset, shares her experience of the role.
What are some of your favourite anecdotes from working with people with advanced MS?
Being in this post means I can be more responsive to the needs of my patients. I was able to urgently see a gentleman who was unwell at home and had been bed bound for 10 days. Following a detailed assessment, I was able to initiate a change in his medication for effective spasticity and pain management, arranged for carer input and worked alongside his wife to support her with positioning and stretches whilst he was not mobile. The rapid response, intervention and coordination of care prevented this gentleman from being admitted to hospital.
Why did you apply for the role of an Advanced MS Champion?
As a specialist neurophysiotherapist I had a wide variety of knowledge and skills that I felt I could bring to this new and exciting role. I was excited by not only having the opportunity to continue to develop my specialist MS knowledge, but also to focus on ensuring optimal care for those with advanced MS.
What are your favourite aspects of the role?
I find it rewarding getting to know those with MS and their families/ carers and being able to have a positive impact on their day-to-day life, even with the smallest of changes. I enjoy the challenge of meeting the complex needs of this patient group and having the opportunity to network with other services in the area, working towards shared goals. I love the fact I can be part of shaping the future for those with advanced MS.
What are the most challenging parts of the role?
Often people have very complex needs which cannot always easily be managed, leading to difficult conversations at times. As a practitioner these can be tricky but by having specialist knowledge and expertise in advanced MS, I can support patients through difficult decisions.
Why do you think more Advanced MS Champions should be placed across the UK?
It is estimated there are more than 40,000 people with advanced MS in the UK. These people will often have high dependence on others for care, have multiple complex symptoms with associated significant levels of disability. This can often lead to difficulties in day-to-day life and being able to access appropriate services.
Those with advanced MS deserve high quality care and the Advanced MS Champions programme works towards this. The Advanced MS Champion role is crucial in providing specialist, proactive and individualised assessment, and interventions, coordinating seamless care with multiple agencies and being a support network for the patient and their families.
Having worked in this role for the last 18 months, I have been able to see first-hand the benefits this role can have to the patient and their families and be a source of specialist knowledge for other professionals.