Blog: Early findings from the Understanding the Scope and Value of the Parkinson’s Nurse Research Project

Parkinson’s is the second most common neurodegenerative condition in the UK, affecting over 145,000 people. As part of their healthcare team, People with Parkinson’s (PwP) may be offered the support of a Parkinson’s specialist nurse. These nurses can be the main point of contact for PwP and their families and carers, providing support with managing medication, information, and support, but models of service delivery are different across the UK. The Understanding the Scope of Parkinson's Nurse Specialists (USP) study at Northumbria University, funded by Parkinson’s UK, sets out to establish the scope and value of specialist nursing for PwP by asking: what works, for who, and in what circumstances.

So far, we have surveyed 1232 Parkinson’s nurses, PwPs, and their friends, family, and carers. We are now starting in-depth interviews with a sample from each group to get a comprehensive understanding of experiences and practices. As we do this, and before we prepare formal findings for dissemination, we would like to share some early findings. 

Themes arising from our early analysis include communication, knowledge, medication, and relationships, all of which are perceived by participants to make a positive difference to PwP and their carers when the service is working well. 

Communication

Communication is reported as a key element in the partnership between the nurse, the PwP, and their friends, family, and carers. We  found three factors that appear to have a bearing on successful communication between nurses and PwP: continuity, closeness, and care. These three factors are relied upon to gain access to this service (as well as on-going multiple referrals back out), to obtain individualised knowledge of their condition, and to gain emotional support. This ultimately creates positive impacts on health and wellbeing for PwP and their carers.

• Continuity relates to long-term relationship building and repeated contact with a named nurse.
• Closeness stems in some part from this continuity but also from knowledge gained by the nurse of the individual and their condition, giving the nurse a holistic understanding of the PwP.
• Care is clear and authentic to the PwP and the carer. It is expressed to be felt in the time a nurse takes with or offers to a PwP and their carer, their understanding of the person and their individual needs and challenges, and the knowledge shared by the nurse. 

Knowledge

There are multiple ways that nurses’ knowledge appears to be important including:  

1. That the nurse has a comprehensive understanding of Parkinson’s and its impact on different aspects of health and wellbeing. This allows for the sharing of wide-ranging information on aspects of Parkinson’s symptoms and stages, medications, lifestyle, and self-management advice.
2. That because the nurse understands referral and signposting routes, within and outwith the NHS, and can advocate on behalf of PwP, PwP and their carers can access numerous additional supportive services. 
3. That this reflects a successful long-term relationship between the nurse, the PwP, and their carer, where the PwP feels known and understood.

Diagnosis is indicated as a particularly stressful time for PwP and their family, with there being a lot of information to take in about a complex long term condition. How, when, and in which format knowledge is shared at diagnosis (and thereafter) can have a notable impact on wellbeing.

Relationship

Many of those surveyed shared that they felt that a relationship is best established at diagnosis. However responses indicated that wherever in the Parkinson’s journey the relationship between the PwP and the Parkinson’s nurse is founded, it was perceived as central. If a relationship is formed (and is successful) it is viewed by both PwP and nurses favourably and attributed by them to positive outcomes. Conversely, where a relationship is missing it is perceived to be detrimental. 

An additional element here is the extension of the relationship to include the carer of the PwP. Friends, family, and carers often communicate with and for the PwP, accessing support and sharing their own knowledge with the Parkinson’s nurse to ensure best possible outcomes for the PwP. The (in)formal carers who have answered the surveys had clocked up well over a thousand years of caring experience between them – their support is perceived as critical and their relationship with the nurse valuable.

Journey

Parkinson’s is progressive and is experienced in multiple stages, therefore having the support of a Parkinson’s nurse through the transition of stages  is perceived as beneficial. PwP and their carers note that continuity of a positive supportive relationship over ‘the journey’ of this long term degenerative condition reduces stress, increases knowledge, and supports access to appropriate and timely treatment.

The early findings appear to demonstrate that the Parkinson’s nurse often acts as the keystone for the PwP’s overall care, linking multiple aspects of support together – including extensive referring within and outwith the NHS (60+ different referral routes were shared in the surveys). 

When the relationship works well, and a consistent and complete service is offered, PwP shared that they feel treated as a whole person with their full life needs recognised, producing positive outcomes for their overall health and wellbeing.

To prescribe, or not to prescribe

Prescription has arisen as a particularly strong theme of knowledge and practice. Just over half of the nurses surveyed were prescribers, although nearly all indicated that they are expected to prescribe. Parkinson’s medication is complicated and is rarely taken in isolation. The medication needs of PwP can be extensive, and nurse prescribers shared that they prescribed for Parkinson’s medication and many other aspects of general health and wellness. 

The survey results suggest that due to the trust established in the close relationship with the PwP, alongside their extensive specialist knowledge, medication is a central component of a Parkinson’s nurse’s role on multi-professional teams. Their input often enables faster and more attuned medication changes. 

Nurses who do not prescribe were still likely to advise consultants, as they often have more time and appointments with the PwP, as well as a greater personal knowledge of the PwP (who may also find time with their consultant overwhelming and may struggle to share pertinent information in these appointments as a result). Similarly, nurses provide advice and liaise with GPs regarding other medications unrelated to their Parkinson’s, albeit oftentimes linked.

Contributions to best outcomes

Ultimately, all these discrete elements work together where the service works well to produce positive outcomes for patients and services.

Next steps

As we move into the interview stage of data collection, we will dive deeper into all these issues and produce further quantitative and qualitative analysis to produce formal findings. 

Adopting a realist approach, we will establish what works, for who, and in what circumstances and present our findings in this form. Future plans for dissemination include further blogs and conversation pieces, webinars, conference presentations and academic papers and publications. We look forward to sharing this all as it is ready.

Research Team:
Dr Annette Hand, Principal Investigator, Northumbria University
Dr Angela Bate, Co-Investigator, Northumbria University
Professor Katie Brittain, Co-Investigator, Newcastle University
Professor Amanda Clarke, Co-Investigator, Northumbria University
Dr Katy McEwan, Research Fellow, Northumbria University
Russ Bradford, Parkinson’s Concierge
Charlotte Allen, Parkinson’s Concierge