International Nurses Day 2024
NewsTo celebrate International Nurses Day we wanted to reflect on the journey for neurology specialist nurses in the UK and Republic of Ireland. Nursing roles have evolved; specialist nursing is a part of this and has now been around for over 30 years. We spoke to a group of specialist neurology nurses to hear their thoughts on their role, and its value, both from their own perspective and that of their patients. Many thanks to Jemma Tann, Belinda Bardsley, Mhairi Coutts, Rachel Morrison, Joelle Massouh, Yvonne Leavy, Lucy Ruscoe and Ruth Stross for contributing to this article.
Nurses have an incredibly unique role which benefits not only their patients but their multidisciplinary team, their service, and the NHS as a whole.
'You came to my house to do a review, I told you my darkest secrets and you dealt with it with such compassion and kindness. I think that was the most positive thing i have done in my entire life'
Thank you letter sent from a person with a long term neurological condition
This International Nurses Day, we spoke to a group of neurology specialist nurses working in a variety of different long term neurological conditions to find out what they value about their roles, and the value they feel they bring to their patients.
'As an MS nurse of over 16 years, I have always felt that our role is absolutely critical in altering the trajectory of the disease. Poor understanding of this condition can lead to disastrous consequences. However, information, education and support provided at the time of diagnosis and throughout the disease continuum ensures that the person diagnosed with multiple sclerosis is equipped to manage their condition well and know when to respond, with a supportive team approach to care.
MS nurses help to keep people with MS well, leading active, healthy lives. By intervening at critical moments, we can help to avoid unnecessary hospitalisation and presentations to the emergency room, and we streamline care within the complex healthcare sector.'
Belinda Bardsley, multiple sclerosis specialist nurse, Melbourne, Australia, via 'MS nurse care in Australia' 2022
'Due to the complex nature of Huntington's disease, it can get challenging. I aim to build trusting relationships with my patients and carers and be there for them when they need me. HD is a rare condition, therefore I work closely with the Huntington’s Disease Association to raise awareness and education around HD with care agencies, GPs, social care and other professionals.
Within my team I take a leadership role, supervisions and taking part in service transformation. I am involved in the wider HD community, attending training, conferences and networking events and I am involved in guidelines working groups. I try and keep up to date with research (not easy) but I haven’t yet done any myself - I really admire those who do!'
Jemma Tann, community neurology specialist nurse and Huntington’s disease coordinator, Nottingham, England
We also heard their very real challenges to bring their best to a role which is being stretched further and further, or in some cases diluted down to the detriment of the care able to be provided. We want to highlight the incredible value that nurses and specialist nurses bring to our healthcare system, our services, and the many thousands affected by a neurological condition - and activate real change that can make a lasting difference to our nurses now, and those in the future.
Both across the UK and internationally, nurses are facing huge challenges in their roles at multiple levels: political, structural, educational and clinical. For nurses to be able to provide proactive, rather than reactive care, they need to have sustainable caseloads, which means an adequate nursing workforce, funding to recruit to vacant posts, and a way to successfully upskill new nurses into specialist roles. There also needs to be support from the wider service and healthcare system to enable necessary referrals, provide a multidisciplinary team approach to care and to allow patients to be escalated to the most appropriate professional when needed.
Adding clarity around titles, roles and the different forms of nursing specialism, as the European Specialist Nurse Organisation (ESNO)'s seeks to do this year, along with describing the impact of nursing specialism to strengthen the care of people with chronic diseases and/or linked to disability, vulnerability, and frailty, would further enable effective team working with nurses, practitioners and allied healthcare professionals all working to their particular strengths and skillsets.
'The nurse specialist role in the UK evolved in the 1970s and is often described as a combination of four elements: clinical, education, research, and consultation.
This description perhaps oversimplifies and negates the hidden work that nurse specialists perform, for example, in improving and redesigning services, clinical ‘rescue’ work, the coordination of care and brokering on behalf of patients to ensure appropriate and timely care.
Rescue work is performed primarily by nurses to prevent negative patient events, for example to ensure constipation is addressed and provide education to prevent reoccurrence.'
Call to action
We need more nurses - to share caseloads, allowing for proactive and personalised care which enables practice to better align with the nurse competencies and NICE guidance.
To enable this, we need to:
Invest in specific training and support lower band nurses in accessing this to both upskill those new in post and ensure quality nursing care in the future
Ensure NHS commissioners and managers have clear messaging around the value of retaining posts - and investing in new posts - for both patient and NHS outcomes, financial savings and a 'left shift' in services, in alignment with the neurology transformation programme
We need to better value our nurses and the wide-ranging skillset they offer.
To work towards this we want to:
Ensure clarity and consistency around titles and roles to retain the skillsets needed within each service and allow nurse and practitioner roles to use their differing skillsets to complement each other and improve patient experience
Ask for the collective strength of the public voice - patients, families and colleagues - to highlight this value to government and policy makers, to encourage the top-down changes necessary to safeguard the role of nurses, and the nursing workforce, for tomorrow's NHS. Join our petition to ensure all posts agreed upon as nurse specialist posts are retained as such via https://chng.it/phk2QqCSSY
The UK multiple sclerosis specialist nurse association (UKMSSNA) have recently published competencies for MS nurses to raise awareness of the MS nursing role, ensure optimal and safe care for patients, and support each individual nurse in their career progression. Additionally, the recent epilepsy specialist nursing guidance agreed the clinical experience and educational attainment the nurse should have prior to moving into the field of specialist nursing. They have published a clear pathway through their competencies to set out the professional and educational criteria for the role.
'We need to lead, not to follow.'
'As nurses, we need to inspire others to follow in our footsteps, to continue to grow the profession and expand roles available. But to fly we need to be allowed to spread our wings. We need to reduce the constraints of deadlines, targets and doing what we always have done. With change comes innovation.'
Ruth Stross, head of nursing, Neurology Academy
Case study: Life as a neurology specialist nurse
I have been working in the NHS for 24 years now. I qualified as a nurse in 2005, so that's all I know! I have been a specialist nurse in the community since 2009 after a few years working in hospitals. I began this role as a stroke specialist nurse in the community stroke team in Nottingham. This was a wonderful time and I look back on this role so fondly. The satisfaction of supporting people at home after a difficult time but then seeing them improve day by day was really special.
I then worked in Derbyshire as a community matron before heading back to Nottingham where I was seconded to the community neurology service as the neurology specialist nurse. I worked alongside an amazing MDT with patients with many long-term neurological conditions (MND, muscular dystrophy, ataxia, and strokes to name a few), in their own home. I was blown away by how many people live with these conditions and the postcode lottery of support out there for them. I admire the resilience of my patients and families and I’d like to think I have helped make things a little easier for them.
I still do a little neurology, as it’s so hard to let go of my wonderful patients and I really enjoy neurology nursing but for the last two and a half years I have been working as the Huntington's disease coordinator / specialist nurse. I’m still based in the same team and I am so lucky to work with an incredible HD team and MDT.
This has been a real challenge as it was a condition I hadn’t come across much but I had lots of transferable skills. The rest has been a steep learning curve but I’m fortunate to have a great team behind me and to learn from. I don’t think I will ever stop learning.
My role in the community is to case manage people with HD and support the carers and families. Myself or the assistant practitioner carry out a holistic review with patients 3-6 monthly and I also run an HD clinic with neurology and sometimes psychiatry, once a month. We aim to also support patients or carers in between reviews if things get a little difficult.
A large part of my role is coordinating services in often very complex situations. I also provide education for patients and their loved ones, advanced care planning, signposting to ensure the right services are involved, symptom management/medication reviews, advising around benefits, continuing healthcare support and although we are not an urgent service, we can offer support around crisis.
Due to the complex nature of the disease, it can get challenging. I aim to build trusting relationships with my patients and carers and be there for them when they need me. HD is a rare condition, therefore, I work closely with the Huntington’s Disease Association to raise awareness and education around HD with care agencies/ GPs/ social care etc.
Within my team I take a leadership role, supervisions and taking part in service transformation. I am involved in the wider HD community, attending training, conferences and networking events and I am involved in guidelines working groups. I try and keep up to date with research (not easy) but I haven’t yet done any myself - I really admire those who do! I’ve not ruled it out (but it scares me).
I am very autonomous in my work. My week is incredibly busy and I’m constantly overloaded with emails and my to-do list is always full. It's not physically hard but emotionally and mentally. I am truly grateful to have the support I have. I couldn’t do this job without the wonderful, skilled clinicians around me. I am never bored and time flies by. If I’m honest, I love the challenge.
I sometimes find myself frustrated, knowing that there is something that could really help my patients and families, but we can’t access this or there isn’t the provision. I’d say this is the hardest part of my job. I have to focus on what I can do, with the HD team, this is to always be there, the consistent, the advocate, the support.
We will continue to case manage patients from as soon as they get symptoms and a diagnosis, to the end of life, they become very dear to us. Whilst we watch as HD is passed from family member to family member, their lives caring for family members with HD or having it themselves. If I can lighten that load, just a little, or just for them to know we are always there and will always try and help in some way, that brings me satisfaction.
I am excited for the future, to see the research results and drug trials, to continue to raise awareness of HD, to continue the fight to get specific guidelines in HD, to fight to close the gaps in care but mostly to be there for my patients and their families living with this disease.
Thank you for reading and happy International Nurses Day, I am inspired by so many!
About Huntington's:
Huntington's disease (HD) is a progressive neurological condition which affects your bodys' nervous system – the network of nerve tissues in the brain and spinal cord that coordinate your bodys' activities. Although there is, as yet, no cure, as a team we support patients to learn to manage symptoms more effectively to improve their quality of life.
HD causes difficulties with movement (movements may happen that you don’t expect, while doing what you do want to do becomes more difficult, cognition (difficulties with planning and thinking), and behaviour (changes in behaviour and personality).
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