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Exploring and understanding the scope and value of the Parkinson’s Nurse in the UK (The USP Project)

Parkinson’s affects around 145,000 people in the UK. Guidelines recommend that people with Parkinson’s should have regular access to:

  • clinical monitoring and medication adjustment;
  • a continuing point of contact for support, including home visits when appropriate;
  • and reliable information about clinical and social matters of concern.

Often, these resources are provided by a Parkinson’s Nurse Specialist (PNS). PNSs have been in post for 30 years, however, there is limited evidence to show their effectiveness. More information is needed to provide an evidence base for Parkinson’s nurses.

This study

We want to understand the role and scope of these specialist nurses, the similarities and differences between the different models of nursing and how they impact on the lives of people with Parkinson’s and their loved ones.

Our research is designed to improve our understanding of the scope and value of specialist nurses working in the field of Parkinson’s. It will have significant relevance to the NHS, Parkinson’s UK, people with Parkinson’s and their loved ones and will have the potential to inform future practice and processes.

The study is supported by funding from Parkinson’s UK.

Want to take part?

If you would like to take part in our research, please click the relevant area below, depending on whether you are a specialist nurse, a person with Parkinson’s or a family member or carer of a person with Parkinson’s. There you will be able to view more information about what taking part in this study will involve.

Keep up to date with us via our twitter page @ParkinsonsUSP

Information for specialist nurses

As part of a national study looking at the scope and value of the Parkinson’s Nurse, we would like to talk to you about your experiences as a Parkinson’s Nurse.

As a specialist nurse working in what is, or what was, traditionally a Parkinson’s Nurse Specialist role, your knowledge on appropriate care and support for people with Parkinson’s is hugely important and will contribute to an evidence base for the value and scope of Parkinson’s Nurses.

Participation will involve completing a survey designed and developed by the research team, the PDNSA and the Parkinson’s Excellence Network. You will be able to exit the survey and return to where you left off by clicking “save and continue later” and providing your email address. We will follow up with 15 specialist nurses between January and September 2020 to explore some of the questions further in face to face or telephone interviews. If you are happy to be interviewed, please indicate this at the end of the survey and provide your email address.   

Before taking part, we encourage you to read more detailed information on this study on this Participant Information Sheet

If you would like to take part, please click here.

Information for people with Parkinson's

As part of a national study looking at the scope and value of the Parkinson’s Nurse, we would like to talk to you about your experiences of your Parkinson’s Nurse.

As a person with Parkinson’s, your knowledge on appropriate care and support for people with Parkinson’s is hugely important and will contribute to an evidence base for the value and scope of Parkinson’s Nurses.

Participation will involve completing a survey designed and developed by the research team, people with Parkinson’s and their family members. You will be able to exit the survey and return to where you left off by clicking “save and continue later” and providing your email address. We will follow up with 15 people with Parkinson’s between April and December 2020 to explore some of the questions further in face to face or telephone interviews. If you are happy to be interviewed, please indicate this at the end of the survey and provide your email address.   

Before taking part, we encourage you to read more detailed information on this study on this Participant Information Sheet

Survey for people with Parkinson’s coming soon! Keep checking this page for updates.

Information for family member/carer of people with Parkinson's

As part of a national study looking at the scope and value of the Parkinson’s Nurse, we would like to talk to you about your experiences of your Parkinson’s Nurse.

As a family member or carer of a person with Parkinson’s, your knowledge on appropriate care and support for people with Parkinson’s is hugely important and will contribute to an evidence base for the value and scope of Parkinson’s Nurses.

Participation will involve completing a survey designed and developed by the research team, people with Parkinson’s and their family members. You will be able to exit the survey and return to where you left off by clicking “save and continue later” and providing your email address. We will follow up with 15 family members/carers of people with Parkinson’s between April and December 2020 to explore some of the questions further in face to face or telephone interviews. If you are happy to be interviewed, please indicate this at the end of the survey and provide your email address.   

Before taking part, we encourage you to read more detailed information on this study on this Participhttps://northumbria-cdn.azureedge.net/-/media/corporate-website/new-sitecore-gallery/news/documents/pdf/information-sheet-survey-converted.pdfant Information Sheet

Survey for family members/carers of people with Parkinson’s coming soon! Keep checking this page for updates.

Updates about the study

Click here to read more about how the survey is progressing and when we will be sharing the results.

About us

We are part of the Department of Nursing, Midwifery and Health at Northumbria University, Newcastle. Below is a little bit of information about everyone involved in our study.

Dr Annette Hand

Annette is an Associate Professor of Nursing, Midwifery and Health at Northumbria University and the Clinical Lead in Nursing for the UK Parkinson’s Excellence Network. Annette has worked with the Parkinson’s Northumbria Team for over 21 years, and for the past 15 years she has worked as a Nurse Consultant in Parkinson’s Disease.  She has worked on and has been involved with multiple research studies and publications in Parkinson’s including identifying non-motor symptoms, examining sexual dysfunction and understanding care needs in Parkinson’s. Annette obtained her Doctorate in 2018; her thesis focused on understanding carer stain and its relationship to care home placement for people with Parkinson’s.

 

Dr Sonia Dalkin

Sonia is a Senior Lecturer in the Faculty of Health & Life Sciences at Northumbria University. She is also co-lead of the Healthy Ageing Research Programme for Fuse (The Centre for Translational Research in Public Health). Her research interests and expertise include realist research, which involves asking not only ‘if’ services or interventions work, but also ‘who do they work for, in which circumstances and why?’ Sonia has over 10 years’ experience in realist research and now provides training in the approach throughout the UK and internationally. Sonia’s research is mostly focused on health and social care service models and systems, with specific interests in community delivered services.

 

Dr Angela Bate

Angela is a Health Economist and Health Services Researcher with an interest and practical experience in undertaking economic evaluation, healthcare commissioning and priority setting, discrete choice experiments, qualitative and ethnographic research. Angela's PhD entitled "Managing Scarcity: understanding and developing healthcare commissioning" utilised quantitative and qualitative research to interrogate approaches to primary care commissioning. Before joining Northumbria University, Angela worked at Newcastle University for fourteen years and has also previously worked at York University (Centre for Health Economics), Aberdeen University (Health Economics Research Unit), and freelance for The Department of International Development (DfID), The British Council, and Save the Children UK. Angela's main research interests are around the use of economics in commissioning health services. Angela has published widely in this area as well as leading and contributing to a numbers of national funded research council, Department of Health, and NIHR research grants.  

 

Prof Amanda Clarke

Amanda is a Professor of Nursing, Midwifery and Health at Northumbria University. Prior to working at Northumbria University, Amanda worked in the School of Nursing and Midwifery and the School of Health and Related Research at the University of Sheffield and the University of Aberdeen in the Centre of Academic Primary Care. She was awarded her Doctorate in Sociology in 2001 at the University of Sheffield. Amanda has taught extensively across undergraduate and postgraduate nursing programmes and her research interests focus on the health care of older adults; specifically, developing ways to offer older adults education, information and support in the management of long-term conditions and when thinking about, and planning for, the end of their lives.

 

Dr Katie Brittain

Katie is a Professor of Ageing & Health in the Department of Nursing, Midwifery & Health at Northumbria University. Katie is a Social Gerontologist and has an educational background in Sociology.  This has enabled her to pursue her research interests in the social impact that illness can have on the lives of older people. Before joining Northumbria University, Katie worked at Newcastle University for sixteen years. During her time as a researcher she has researched and published widely around the impact of ill health on older people and carers. More recently her work has focused around how aspects of the physical, social and technological environment pose challenges and opportunities for older people and their wider community.

 

Dr Sarah Brown

Sarah is a Research Fellow at Northumbria University. Her research interests include realist research and the management of long-term conditions. She completed her PhD in Public Health and Wellbeing at Northumbria University in 2019. Her thesis focused on understanding care and support planning for people with long-term conditions.

 

Charlotte Allen

Charlotte was diagnosed with Parkinson’s at age 36. She owns two companies and is a co-founder of Parkinson’s Concierge; a Loyalty Membership Scheme offering discounted rates and specialist offers for people with Parkinson’s. Charlotte devotes her time to creating awareness of Parkinson’s. She wanted to be involved in this research project to promote awareness of what Parkinson’s Nurses do and the impact they have on people with Parkinson’s and their loved ones.

 

Russ Bradford

Russ was diagnosed with Parkinson’s at age 40. He is a co-founder of Parkinson’s Concierge and devotes his time to raising awareness of Parkinson’s, particularly in younger generations, and helping people with Parkinson’s to make savings on their outgoings. Russ wanted to be involved in this research project to promote the work of Parkinson’s Nurses and their role in helping all people affected by Parkinson’s.

 

 

Contact us

If you have any questions or would like any further information about the study please contact:

The USP Team

Northumbria University

H213 Coach Lane Campus East

Coach Lane

Benton, NE7 7XA

Email: USP.Team@northumbria.ac.uk

Tel: 0191 243 7502

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