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OXFORD HANDBOOK OF
Neuroscience Nursing
SECOND EDITION
edited by
Catheryne Waterhouse
Education Lead, Head and Neck Directorate, Neurosciences, Royal Hallamshire Hospital, Sheffield, UK
Sue Woodward
Head of Clinical Education, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, London, UK
1
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The moral rights of the authors have been asserted
First Edition published in 2009
Second Edition published in 2021
Impression: 1
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Preface
We would like to introduce the second edition of the Oxford Handbook of Neuroscience Nursing. Although it is aimed at supporting student and novice nurses, it is highly likely that someone we know personally, a friend, work colleague, or family member, may be suffering with a neurological long-term condition, and this book should prove an invaluable resource to increase our knowledge of the complex conditions and symptom management about which generalists often know very little.
Reflecting on the advances that have been made in the last 10 years, while many things have changed largely due to improvements in diagnosis and advances in neurological care, some things have stayed the same. Healthcare continues to face big changes with an ageing population and increasing numbers of people surviving and living with chronic health problems. It is well documented that stroke is the single greatest cause of severe disability in the UK and as the prevalence of dementia, Parkinson’s disease, and other neurological conditions increases, there are growing demands on acute and primary care resources and finances.
The specialty of neuroscience is huge with multiple subspecialties that range from acute in-patient care to rehabilitation and eventually ongoing management in the home. Complications are common in many of these patients suffering with acute, chronic, or degenerative conditions, for example, dysphagia, aspiration, pneumonia, bladder and bowel problems, depression, and loss of well-being, and, when left undiagnosed and untreated, are associated with increased morbidity and mortality. These people require a mixture of treatments and individualized therapies that relate to a number of specialty areas of practice requiring knowledge of the disease and the person. Irrespective of the specialty in which you work, health professionals are crucial stakeholders in the multidisciplinary team and play a key role in helping to assess, implement, and evaluate evidence-based care across all patient pathways.
Caring for a person with a neurological disorder, whether that results from acute trauma or a long-term condition, is highly complex, emotional, challenging, and frequently involves ethical decision-making on different levels. We need compassionate, skilled, knowledgeable, and competent nurses to have the expertise to provide the right care at the right time, enabling people and their families to adapt to the devastating impact of their disease. We hope this quick reference book will give practitioners the reassurance that they are providing the best quality of care for their patients.
Symbols and abbreviations
% cross reference
22 act quickly
d decreased
i increased 0 warning
A&E Accident and Emergency
ABCD airway, breathing, circulation, and disability
ABG arterial blood gas
ABI acquired brain injury
ACh acetylcholine
ACTH adrenocorticotrophic hormone
AD Alzheimer’s disease
ADH antidiuretic hormone
AED antiepileptic drug
AEP auditory evoked potential
AHP allied health professional
ALS amyotrophic lateral sclerosis
ANS autonomic nervous system
ARDS acute respiratory distress syndrome
BAEP brainstem auditory evoked potential
BAPEN British Association of Parenteral and Enteral Nutrition
BBB blood–brain barrier
BE base excess
BIPAP biphasic positive airway pressure
BIS Bispectral Index
BMI body mass index
BMR basal metabolic rate
BP blood pressure
bpm beats per minute
Ca2+ calcium
CAM complementary and alternative medicine
CaO2 amount of oxygen carried by 100 mL of arterial blood
Senior Ataxia Nurse Specialist, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, South Yorkshire
Leah Lockhart Nurse Educator, North East, Yorkshire and Humber Paediatric Neuroscience Network, Sheffield, North East, Yorkshire and Humber
Alison Richmond Complex Rehabilitation Case Manager, NHS England and NHS Improvement, North East & Yorkshire Region Specialised Commissioning Team Sheffield, North East, Yorkshire and Humber
Nicola Smith
Clinical Nurse Specialist in Epilepsy, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, South Yorkshire
Rowan Sutherill Specialist Neuro-Dietitian, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, South Yorkshire
Kirsty Vickerman Specialist Psychotherapist in Neurology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, South Yorkshire
Elizabeth Woodhead Clinical Nurse Specialist in Multiple Sclerosis, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, South Yorkshire
Contributors to the first edition
Nadine Abelson-Mitchell
Senior Lecturer, University of Plymouth, Plymouth, UK
Sue Beevers
National Service Development Manager,
Scottish Huntingdon’s Association, Aberdeenshire, UK
Sonja Bellamy
Senior Staff Nurse, Northern General Hospital, Sheffield, UK
Mary Braine Lecturer, University of Salford, Salford, UK
Erica Chisanga
Epilepsy Nurse Consultant, Addenbrooke’s Hospital, Cambridge, UK
Louise L. Clark
Lecturer in Mental Health and Intellectual Impairment, Florence Nightingale School of Nursing and Midwifery, King’s College London, London, UK
Jan Clarke
Clinical Nurse Specialist for Motor Neurone Diseases, National Hospital for Neurology and Neurosurgery, London, UK
Gill Cluckie
Stroke Nurse Specialist, Guy’s and St Thomas’ NHS Foundation Trust, London, UK
Fiona Creed
Senior Lecturer, University of Brighton, Brighton, UK
Ben Dorward
Senior Pharmacist, Royal Hallamshire Hospital, Sheffield, UK
Alison Forbes
Parkinson’s Disease Nurse Specialist, King’s College Hospital, London, UK
Angus Forbes
Senior Lecturer, Florence Nightingale School of Nursing and Midwifery, King’s College London, London, UK
Lynda Gunn
Nurse Practitioner, Royal Hallamshire Hospital, Sheffield, UK
Heather Hale
Clinical Educator, Royal Hallamshire Hospital, Sheffield, UK
Paul Harrison
Practice Development Manager, Spinal Injury Unit, Northern General Hospital, Sheffield, UK
Acting Director of Services, Headway, Nottingham, UK
Roni Helliwell
Clinical Educator, Integra Neurosciences, Hampshire, UK
Stuart Hibbins
Lecturer in Children’s Nursing, South Bank University, London, UK
Karen Ibbotson
Macmillan Nurse (Neuroscience), Royal Hallamshire Hospital, Sheffield, UK
Chris Jacobs
Consultant Genetic Counsellor, Guy’s and St Thomas’ NHS Foundation Trust, London, UK
Susan Jacobs
Parkinson’s Disease Nurse Specialist, King’s College Hospital, London, UK
Katy Judd
Dementia Nurse Consultant, National Hospital for Neurology and Neurosurgery, London, UK
Ehsan Khan
Lecturer,
Florence Nightingale School of Nursing and Midwifery, King’s College London, London, UK
Alison Lashwood
Consultant Nurse in Clinical Genetics and Preimplantation
Genetic Diagnosis, Guy’s and St Thomas’ Hospital, London, UK
Stephen Leyshon
Primary Care Project Lead, National Patient Safety Agency, London, UK
Lindy May
Paediatric Nurse Consultant, Great Ormond Street Hospital for Children NHS Trust, London, UK
Jan McFadyen
Nurse Consultant in Non-Cancer Palliative Care, South Downs Health NHS Trust, Brighton and Hove, UK
Amrish Mehta
Consultant Neuroradiologist, Hammersmith Hospitals, London, UK
Celia Mostyn
Neurology Liaison Nurse Specialist, Great Ormond Street Hospital for Children NHS Trust, London, UK
Anne Preece
Professional Development Nurse, University Hospital Birmingham Foundation Trust, Birmingham, UK
Richard Warner
Multiple Sclerosis Consultant Nurse, Gloucestershire Hospitals, NHS Trust, Gloucester, UK
Policy influences on neuroscience practice
Introduction 2
NHS England: NHS Long Term Plan (2019) 4
NICE, Royal College of Physicians, and other guidelines 6
NHS RightCare: Neurology (2015) 7
Guidelines for the Provision of Intensive Care Services (GPICS), second edition (2019) 8
Benchmarking neuroscience practice 10
Neuroscience nurse specialists 12
Neurosurgeons and neurologists 14
Neurological Alliance 15
The role of the voluntary sector 16
Intellectual impairment and neuroscience 18
Palliative care 20
Carers 22
influences on neuroscience practice
Introduction
This chapter provides the reader with access to a summary of many relevant UK health policies that underpin and influence neuroscience nursing practice.
Nurses have the potential to profoundly influence healthcare policy and help shape the care that will be provided in the future. Ultimately, our contributions and participation in various professional working groups at national and local levels can directly benefit the development of legislation, policies, and guidelines that can impact resource allocation and delivery of high-quality patient care.
The chapter also includes an explanation of a number of other key concepts that influence our day-to-day practice. While not government policy or directives, these concepts are equally important to grasp and are regularly encountered by neuroscience nurses, e.g.:
• Benchmarking
• Role of the voluntary sector
• Expert patients
• Principles of palliative care
• Carers’ issues.
NHS England: NHS Long Term Plan (2019)
The NHS Long Term Plan was developed in collaboration with a number of professional bodies including the Care Quality Commission (CQC), Public Health England, NHS Improvement, senior managers, clinicians, and patients. The aim was to move the focus in healthcare to a greater emphasis on preventive medicine and assign more control in terms of quality of care and funding to the patients to close the gaps in services. The NHS Long Term Plan brings together a number of pieces of legislation laid down since 2000, specifically:
• The NHS Plan (2000)—focused on increasing staffing numbers, reducing waiting lists, and introducing new targets and standards
• The NHS Improvement Plan (2004)—committed to directing services towards preventative health strategies, reducing inequalities, and prioritizing care of people with long-term conditions
• National Service Framework for Long-term (Neurological) Conditions (2005)—primarily aimed at services for adults with long-term neurological conditions, such as epilepsy, multiple sclerosis (MS), Parkinson’s disease (Pd), stroke, and spinal cord injuries, although it was relevant to people with other long-term conditions such as diabetes and rheumatoid arthritis. Published by the department of Health (dH), the National Service Framework (NSF) aimed at improving standards of care and setting goals and targets for NHS trusts to meet
• Our Health, Our Care, Our Say (2006)—legislation to try and shift services away from hospital-based care towards primary care services
• High Quality Care For All (2008)—directed goals towards improving quality of care and patient safety
• Healthy Lives, Healthy People (2010)—long-term vision for future public health services, emphasizing preventive management
• Equity and Excellence: Liberating the NHS (2010)—saw the abolition of primary care trusts and strategic health authorities with the aim of devolving funding and decision-making to general practitioners (GPs)
• NHS Five Year Forward View (2014)—recognized the wide variability of services across the country, highlighting health inequalities, the increasing costs of new drugs and treatments, and increasing challenges when trying to meet the needs of elderly patients and people suffering from mental health problems.
Goals of the long-term plan
1. Making sure everyone gets the best start in life, e.g.:
• Reducing stillbirths and maternal and neonatal deaths by 50%
• Supporting mothers at risk of premature birth
• Tackling childhood obesity
• Improving mental health services
• Supporting children with learning disabilities
• Improvements to child cancer treatments
2. Delivering world-class care for major health problems:
• Reducing heart attacks, strokes, and dementia
• Preventing premature deaths
• Earlier diagnosis of cancers
• Improved interventions for mental healthcare
3. Supporting people to age well:
• Increasing funding for primary and community care
• Co-coordinating and integrating primary care services to enable people to live at home longer
• Introducing rapid response teams to reduce unnecessary hospital admissions
• Improvements to dementia care
• Improvements in patient choice in relation to palliative care.
At a local level, sustainability and transformation partnerships (STPs) and integrated care systems (ICSs), local councils, and voluntary agencies are directed to develop action plans to enable them to meet the long-term goals proposed in the NHS Long Term Plan, highlighting five priority areas:
• Putting the patient at the heart of care organizations: ‘doing things differently’ is the new mantra: handing over control to patients to manage their own healthcare needs; development of ‘primary care networks’ and ‘integrated care systems’, a joint initiative between GPs, and community services to provide joint services.
• Empowering the workforce to deliver the NHS of the future: aiming to increase the numbers of doctors, nurses, healthcare professionals, and apprenticeships; providing opportunities for professional development of knowledge and skills.
• Harnessing the power of innovation: improving access to digital technology for patients and staff, enabling them to access services and health information. The ‘NHS App’ is seen as a digital ‘front door’ to patient information enabling staff to access patient records.
• Getting the most out of taxpayers’ investment in the NHS: there is an expectation that health professionals work to identify different and more collaborative ways of working in order to reduce duplication in how clinical services are delivered and where possible reduce costs and spending on consumables, drugs, equipment, and administration.
• Health promotion: increased investment into combating the obesity epidemic, especially in younger children; smoking cessation, reducing alcohol consumption, and avoiding type 2 diabetes.
Further information for health
professionals and the public
Bernard, S., Aspinal, F., Gridley, K., and Parker, G. (2010). Integrated services for people with longterm neurological conditions: evaluation of the impact of the national service framework. Final Report, SPRU Working Paper No. Sdo 2399. Social Policy Research Unit, University of York. M http://php.york.ac.uk/inst/spru/research/summs/ltnc.php department of Health (2005). The national service framework for long-term conditions. M http:// www.dh.gov.uk/ en/ Publicationsandstatistics/ Lettersandcirculars/ dearcolleagueletters/ dH_ 4106704 department of Health (2006). our health, our care, our say: a new direction for community services. M http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/Browsable/dH_4127552 NHS England, NHS Improvement. (2019). Implementing the NHS long term plan: proposals for possible changes to legislation. M https://www.longtermplan.nhs.uk/publication/ implementing-the-nhs-long-term-plan/
NICE, Royal College of Physicians, and other guidelines
The National Institute for Health and Care Excellence (NICE) was set up in 1997 to review evidence and ensure best practice is implemented throughout the health service. Guideline development groups and clinical experts look at clinical evidence of effectiveness and cost-effectiveness before issuing policies and guidelines.
NICE published guidelines
NICE has published guidelines on a range of neurological conditions, e.g.:
• dementia: clinical guideline (CG) 97 (2018)
• Epilepsy: CG137 (2012)
• Head injury: CG176 (revised 2014)
• MS: CG186 (2014)
• Pd: NICE guideline (NG) 71 (2017).
There are also guidelines on other topics relevant to care of neuroscience patients, e.g.:
• Faecal incontinence: quality standard (QS) 49 (2014)
• Nutrition support in adults: CG32 (2006)
• Urinary incontinence: CG148 (2012).
All guidelines are available for download through the NICE website: M http://www.nice.org.uk.
As an independent body working within a limited financial framework, difficult decisions often have to be made about which medications and treatment pathways to support. Periodically, appeals are made against the decisions of NICE regarding NHS funding of drugs by patient groups and professionals; NICE has to balance the benefits in terms of overall costs and the impact on quality of life versus extension of life and possible side effects, known as the incremental cost effectiveness ratio or ICER.
The Royal College of Physicians and other guidelines
Some guidelines have been issued by other organizations such as the Royal College of Physicians (RCP), e.g. guidelines for stroke care which is now in its fifth edition (RCP, 2016).
The Scottish Intercollegiate Guidelines network (SIGN) has also issued guidelines for stroke care, epilepsy, and head injury management.
Further information for health professionals and the public
Royal College of Physicians (2016). National Clinical Guidelines for Stroke. Prepared by the Intercollegiate Stroke Working Party. London: Royal College of Physicians. Scottish Intercollegiate Guidelines Network: M http://www.sign.ac.uk
NHS RightCare: Neurology (2015)
The NHS RightCare initiative was launched in 2015 directed towards making quantitative and qualitative improvements in healthcare outcomes by reducing unnecessary variation in patient treatment options and patient experience. In particular, patients with progressive neurological conditions frequently experience delays in diagnosis and treatment, services tend to be fragmented, and access to specialist neuro-rehabilitation services is invariably challenging. In order to make demonstrable and consistent changes, STP teams consisting of effective change leaders, primary care partners, analysts, and ICSs were put in place to support local NHS services. Their aim is to ‘Get it Right First Time’ (GIRFT), ensuring that the right person has the right care, in the right place, at the right time.
The NHS RightCare principles
• diagnose issues in patient management and identify improvement opportunities with data, evidence, and intelligence.
• develop solutions, guidance, and innovation.
• deliver improvements for patients, populations, and systems.
To facilitate implementation, a series of measures have been devised:
• development of data packs and resources to support delivery partners and local healthcare systems. Provide practical guidance on how to address the key challenges such as demographic factors, deprivation, and age when commissioning services for people with progressive neurological conditions.
• RightCare toolkits for patients with MS, motor neurone disease (MNd), Pd, multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration. Toolkits contain long-term condition scenarios and case studies to enable sharing of best practice, including:
• Focus packs
• ‘Where to look packs’
• Primary care level packs.
• In order to develop resources and provide the greatest improvements and changes to service, RightCare promotes collaborative working with key stakeholders and voluntary agencies such as the Motor Neurone disease Association, Multiple Sclerosis Trust, Parkinson’s and Sue Ryder Foundation.
• A knowledge management service that will enable people to share knowledge and experiences, thereby avoiding repetition and optimizing interventions.
Further information for health professionals and the public
NHS England (2019). NHS RightCare. M https://www.england.nhs.uk/rightcare/ Thomas, S. (2019). NHS RightCare and neurology. British Journal of Neuroscience Nursing, 15, 128–9.
Guidelines for the Provision of Intensive Care Services (GPICS), second edition (2019)
over the past 10 years, significant progress has been made in improving the care of people who are critically ill. Particularly since the introduction of major trauma centres, the demand for critical care services has increased due to the numbers of cases of polytrauma, out-of-hospital cardiac arrest, head-injuries, and raised expectations of patients.
GPICS builds on the 2015 publication of the guidelines for the provision of intensive care services in the UK.
First published in April 2015, the second edition of GPICS is regarded by the Intensive Care Society and intensivists as an excellent reference source for the planning, commissioning, and delivery of adult critical care services in the UK. Clinicians have used the evidence-based standards and recommendations as a tool to improve local services and improve patient care. GPICS is now used as an instrument to peer review and assess acute services and is used by the CQC to benchmark against other services.
The comprehensive document consist of six chapters that are underpinned throughout by the need for excellent patient care with a greater emphasis on outcomes, ensuring that patients are always cared for in a safe, high-quality environment by sufficient numbers of suitably trained and experienced staff.
Main areas identified for consideration
• Critical care services—workforce:
• Medical staffing
• Nursing establishment
• Training
• Advance critical care practitioners
• Allied healthcare professionals
• Critical care services—process:
• Capacity management
• Critical care outreach
• Infection control
• Rehabilitation
• End of life care
• organ donation
• Legal aspects of capacity and decision-making
• Critical care services—clinical care:
• Neurological support
• Respiratory support
• Critical care services—additional components:
• Clinical commissioning
• Critical care networks
• Audit and quality improvement
• Research
• Critical care services—emergency preparedness:
• Major incidents
• Business continuity
• Fire
• Levels of critical care:
• Includes equipment, clinical information systems, and environment.
Classification of critical care patients
The terms ‘high dependency and intensive care’ have been replaced by a classification focusing on the level of care required by the patient rather than their location.
Level 0
Patients whose needs can be met through normal ward care in an acute hospital
Level 1 Patients at risk of their condition deteriorating, or those recently relocated from higher levels of care, whose needs can be met on an acute ward with additional advice and support from the critical care team
Level 2 Patients requiring more detailed observation or intervention including support for a single failing organ system or postoperative care and those ‘stepping down’ from higher levels of care
Level 3 Patients requiring advanced respiratory support alone or basic respiratory support together with support of at least two organ systems. This level includes all complex patients requiring support for multiorgan failure
Further information for health professionals and the public department of Health (2004). Neuroscience Critical Care Report: Progress in Developing Services London: department of Health. M http://www.doh.gov.uk/nhsexec/compcritcare.htm
The Faculty of Intensive Care Medicine and Intensive Care Society (2019). Guidelines for the Provision of Intensive Care Services (GPICS), second edition. M https://www.ficm.ac.uk/ standards-research-revalidation/guidelines-provision-intensive-care-services-v2
