There are many specialisms within the field of practice, from those which are linked to long- term neurological conditions such as stroke to life-limiting neurological conditions including Huntington’s disease and neurotrauma from a brain or spinal injury.

Due to the variations between specialisms, one of the core elements of care for any neuroscience nurse is the person-centred approach.

Most people with long-term neurological conditions can live fulfilling lives, whether this be in a hospital or care setting, and central to their fulfilment is the understanding of their wants and needs.

The fundamental approach of person-centred care has become core to care delivery due to the increased emphasis from regulators such as the CQC and the Health and Social Care Act 2008.

While the person-centred approach applies much more widely than being bespoke to the care of people with neurological conditions, the variations between the ways in which conditions present in service users reinforces the requirement for person-centred care. Within a single care setting it would be rare for the symptoms and behaviours of a condition to present in the same way across patients and service users.

This is both a challenge, due to the nature of each individual requiring thorough and detailed ongoing assessments, and an opportunity for neuroscience nurses to deepen their knowledge about one or a cluster of related conditions.

The opportunity, or sometimes requirement, to learn more about a single condition often leads to the specialisms and within care settings to a greater degree than hospitals, this has provided regionalised and provider- wide concentrations of specialist support.

At Exemplar Health Care, a specialist-nursing care provider for adults with complex needs including those arising from neuro-disability, there are units within their 27 homes which are dedicated to a single condition such as Huntington’s disease and dementia. This has allowed the units to focus on the person- centred approach while equipping the

care staff, from specialist consultants and qualified nurses to care assistants, to develop a deep understanding of the conditions their residents are living with.

Julie Schofield (pictured below) at Exemplar’s Fairburn Mewshome in Castleford shares her journey from care assistant to unit leader specialising in Huntington’s disease.

What is an average day as a unit lead specialising in Huntington’s disease like?

I don’t think there are many of us in health and care settings that have an average day but there are several tasks that I do day-to-day and are the cornerstone of my work.

My priorities including managing service users’ needs, writing and reviewing care plans, encouraging service users to engage with health professionals such as myself and the wider multidisciplinary team involved in their care, and managing challenging behaviours.

How do you work with the wider multidisciplinary team to manage challenging behaviours?

Working within a wider team is part of our day-to-day and we have close relationships with the GP, neurologist consultant, SALT (speech and language therapist), physio and nutritionist.

In addition to this, my unit specialises in care for residents with Huntington’s disease and we have close links with the Huntington’s Disease Association to support our knowledge of care and research related to the disease.

As well as working with external partners, within Exemplar we have a consultant psychiatrist, Dr Peter Marshall who has introduced Skype reviews to improve accessibility to timely, specialist psychiatric assessments.

Prior to a Skype interview, the person needs to consent and be assessed as having the capacity to consent.

The sessions are available to all residents in our homes that have been referred to the Behavioural Support Mental Health Team (BHMSHT) or Huntington’s Disease Helpline.

Referrals to the BSMHT are for problems viewed as urgent by colleagues such as myself, who are within the home setting with the resident, where a sudden, significant deterioration has occurred or there has been a significant increase in risk.

The Huntington’s Disease Helpline is for less urgent problems, where my colleagues and I may be becoming concerned that a resident is deteriorating, but interventions that we have previously practiced and had success with, have so far not had the desired effect.

Our network internally and externally allows the team to monitor difficulties, update care plans and refer to wider healthcare support as required.

Over time, the core team on my unit have been able to spot areas of concern before they have become problematic due to the knowledge that we have gained through experience and the close bonds we’ve been able to develop with residents through person-centred care.

The personal relationship cannot be underestimated when caring for adults with life-limiting neurological conditions – developing trust and having an opportunity to build a bond with a resident prior to a decline has often offered them reassurance when we have had to request additional support and intervention to manage their challenging behaviours.

How has your role changed during your neuroscience nursing career?

My career in care began in 2006 as a care assistant and at this time, I wasn’t specialised in neuroscience care.

I was initially frightened by Huntington’s disease but due to a combination of wanting to understand more and the Huntington’s Disease Association website, I was able to understand why some of the challenging behaviours I was witnessing were happening.

I progressed from care assistant to team leader before becoming a nurse and after several years I was promoted to unit leader.

What has inspired you to progress in your career?

All the service users I’ve worked with have been inspiring in their own ways. I’ve got to see such a small portion of their lives and even though many have experienced failed placements before I’ve met them, their personalities have always shone through.

As well the joy our residents have brought, I’ve been lucky to work with some brilliant nurses across my career and build a great team at a local level.

What would you say to someone who is considering developing a neuroscience specialism?

For me it feels as though the specialism chose me and, in some ways, I think that it is best for the initial interest to evolve organically.

It’s no surprise that some of my fellow healthcare professionals have developed theirs based on family experience with a neurological condition and no matter what triggers the inquisitiveness, the desire to learn more is what I believe should be at the heart of any specialism.

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