Improving Parkinson's disease support services

The care of people with Parkinson’s (PwP) has been an understudied area of research until now. Researchers at Northumbria University are conducting new research into current care models, triggers for care home admissions and care experiences of PwP, family members and healthcare workers. Their findings have informed policy, best practice guidelines and care models, helping to boost care and quality of life for PwP and their carers.

Parkinson’s is a chronic neurological condition that affects 1 in every 350 adults in the UK and between seven to 10 million people worldwide. It is a life-changing disease that causes a range of physical and psychological symptoms, but primarily shaking, decrease in movement and stiffness. As the condition worsens over time, people with Parkinson’s (PwP) need live-in care, which is usually provided by family members. 

The intensity of care required by PwP can lead to carer strain and without the right support they may need to be placed in care homes. Regrettably, PwP in residential care often experience worse outcomes than they would at home due to a lack of awareness about the condition and the care required. 

Dr Annette Hand, Professor at the Department of Nursing, Midwifery & Health at Northumbria University, is leading a longitudinal study that aims to uncover the care needs of PwP. Findings have already led to changes in guidelines, practice and care outcomes for patients and carers. They have also advanced clinical service design and delivery and made a significant difference to the health and wellbeing of PwP, their family members and carers.  

One of the study’s most noteworthy discoveries was that carer mental health worsened as a result of caring. Based on this knowledge, researchers recommended carers receive professional support and signposting to Parkinson’s UK support services. These recommendations have driven changes to support resources and healthcare tools. Dr Hand, for example, is using the findings as a basis for updating a number of Parkinson’s UK support resources, including the booklet ‘Looking after your resident with Parkinson’s’. In addition, SystmOne (electronic patient healthcare records routinely used by GPs) has been amended to prompt local specialist Parkinson’s teams to ask about carer issues, identify areas of carer strain and ensure referral for a carers assessment and other support options has been actioned. 

Importantly, this pioneering study is influencing policy, professional standards and guidelines. Dr Hand has shared her research findings with the national Parkinson’s UK Excellence Network Underserved Group, where she serves as a member, and is presenting them at various UK events. Meanwhile, Parkinson’s UK has used the research findings to create Parkinson’s Connect, a support service being rolled-out to the whole of the UK to help improve care for PwP and their families. Family members are already noticing how the extra support is making a difference to them in their caring roles.

The impact of the research goes further, strengthening professional education and training. The Parkinson’s Academy, for example, has invited Dr Hand to join the faculty to share and explore research evidence with health and social care professionals, potentially leading to changes in practice and improvements in patient and carer outcomes.

The study is funded by Parkinson’s UK and is supported by Northumbria Healthcare NHS Foundation Trust and UK Parliament.