Neurology Central

Striving for ‘best health’: driving up the standard of services for Parkinson’s disease patients in the UK

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Neurology Central speaks to Professor David Burn, Clinical Director at Parkinson’s UK – the UK’s Parkinson’s support and research charity – to discuss the recently launched Parkinson’s Excellence Network, and the future of Parkinson’s disease treatment and care in the UK.

You’ve recently published a detailed Institutional Profile of the UK Parkinson’s Excellence Network in Future Science Group’s Neurodegenerative Disease Management [1]. For the benefit of Neurology Central’s members, can you tell us about this initiative and what it aims to achieve?

The Parkinson’s Excellence Network is a really exciting and innovative collaboration, which has been driven by the views of individuals with Parkinson’s in the UK. When these individuals were surveyed, they listed the top three things that they would wish for,one of which was improved service quality. The patient is driving the change and it’s being harnessed and choreographed by the expertise and resources of Parkinson’s UK to help empower patients for self-management.

The third part of the network is the professional group who see people with Parkinson’s week in and week out, and by that I mean doctors, nurses, physiotherapists, pharmacists – everybody in primary and secondary care working together to deliver better treatments. The idea is that the three points of the triangle are going to come together and drive up the standard of service for individuals with Parkinson’s across the UK.

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As a clinician involved in the care of patients with Parkinson’s disease, how does your experience in the clinic influence the decisions you make as Clinical Director at Parkinson’s UK?

I think what it makes me realize more than anything is that everybody is an individual and that Parkinson’s is a condition that affects individuals in very different ways so you can’t really generalize; for example, you can’t say one size fits all in terms of pharmaceutical treatments. It’s very important to have an individual approach and it’s also really important to realize that sometimes we see patients in clinic and I realize, sadly, that some of them are too frail or unwell to come back to the clinic.

I hope that what we are seeing in the clinic is a representative number of people in my area with Parkinson’s. However, there are others out there where the services are not reaching them as optimally as they might.  But overall I think my clinical experience gives me a good sense of the sort of things that people with Parkinson’s want to be done better. And, in particular, it makes me realize that you have to treat everybody as an individual.

Have there been any cases or individuals who have particularly inspired you?

There are no one or two cases, or individuals, but I’ve been with many of my patients since I was a consultant in 1994, so there are several individuals who we’ve been on a fairly long journey with, together with [the patient and]their families. I’ve got to know them as friends as much as patients and you always think ‘what if it was me?’

The way you see people react– the fortitude they have, the positive attitudes they have and the way in which they refuse to be beaten, and some of the innovative ways they come to avoid that situation of being beaten –is obviously something we then try to learn from. They’re all quite inspirational to be honest, and we have little examples of that pretty much every week.

As Professor of Movement Disorder Neurology at Newcastle University (UK) your current research project is focused on predicting dementia in individuals with Parkinson’s.What is the primary aim of your research, and how do you hope your research will impact those diagnosed with Parkinson’s?

I think one of the biggest, or the biggest unmet need for managing patients with Parkinson’s is the development of dementia, which sadly happens in too many individuals. What we’re planning to do with the Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation – Parkinson’s Disease project (ICICLE-PD), which is funded by Parkinson’s UK, is to determine which clinical predictors would put patients at higher risk of developing dementia [2].

This project involves establishing simple tests so that when we develop and identify drugs that are likely to make a difference, particularly at slowing down the onset of the dementia, these drugs can be used in those individuals in a cost-effective and very early way. This will help ensure that they’re not being given across the board to people who don’t require them and are being targeted to those who do.

In 5 years time where do you hope to see the standard of Parkinson’s care?

I would like to see the standard as such that when we do an audit across the country we’re finding no hot spots from patients, whose views will be heard loud and clear in the Excellence Network – where there are no consistent tales emerging of poor service – and where we feel that the UK is leading the world in terms of care for people with Parkinson’s in a multidisciplinary sense.Closely harnessed to that I would like to see more patients with Parkinson’s being offered the chance to take part in research projects, because as we know from our chief medical officer’s mantra – which I fully subscribe to – best research means best health.

Bio:

??????????????????????????????????????????David Burn is Director of Newcastle University’s Institute of Neuroscience (UK), Director of Newcastle Biomedicine’s Clinical Ageing Research Unit and a Senior National Institute for Health Research Investigator. David is also Clinical Director at Parkinson’s UK and the UK Parkinson’s Excellence Network and runs the Movement Disorders service in Newcastle upon Tyne.

David’s research interests include dementia associated with Parkinson’s and progressive supranuclear palsy. He was a member of the Special Interest Committee Task Force of the International Movement Disorder Society for Diagnostic Criteria for Parkinsonian Disorders (2002–2003) and the Parkinson’s disease Dementia Task Force (2004–2006). He was appointed NIHR-DeNDRoN Associate Director/National Lead for Parkinson’s disease in July 2010.

He was Clinical Reviews Editor for the Movement Disorder Journal from January 2007 before taking on an Associate Editorial role in January 2010.  David is an Officer (Treasurer-Elect) of the International Parkinson and Movement Disorder Society, having previously served as Chair of the MDS Congress Scientific Programme Committee (2011–2012). He has published in excess of 220 articles on movement disorders in peer-reviewed journals.

Find out more about Parkinson’s UK research, including how to apply for funding, at parkinsons.org.uk/research. Visit the UK Parkinson’s Excellence Network to access the latest news, resources, events, and training and funding opportunities for health and social care professionals working in Parkinson’s care.

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Disclaimer

The opinions expressed in this interview are those of the interviewee and do not necessarily reflect the views of Future Medicine Ltd.

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