Meet the new leads for the UK Parkinson's Excellence Network regions

1. What Made You Interested in Working in the field of Parkinson's?

"I've found Parkinson's interesting since being a Specialist Registrar in Geriatric Medicine. 

"There is such a range of problems faced by people with Parkinson's to try and help them with. I like the multi-disciplinary nature of the medicine and I enjoy the continuity of looking after patients potentially over many years.  

"It's also a very complex condition and the more we know about it the more I realise we don't know. 

2. Why take on a leadership role with the UK Parkinson's Excellence Network?

"I was looking for a new leadership role and this ticked a lot of boxes - meeting people within Wessex but also nationally. 

"I liked the idea of taking on a role that hopefully would help improve my service to patients, let alone across the region, with good support from Parkinson's UK. 

3. What is the biggest difference we can collectively make to further improve Parkinson's services in the UK? 

"This is a hard question. One of the biggest differences we can make is trying to ensure that a patient with the condition in one area of the country receives the same high standard of care elsewhere. 

"Helping people affected by Parkinson's and empowering them to self-manage their disease is also essential."

1. What made you interested in working in the field of Parkinson's? 

Sally: "When I was a Specialist Registrar in Birmingham I had the opportunity of working with Dr Peter Wallis, a really inspiring physician. He had a special interest in Parkinson's and I was fortunate enough to be able to attend his clinics and receive teaching from him and the rest of the Parkinson's multidisciplinary team.

"This experience sparked my own interest in the condition. I loved the continuity of care, of getting to know patients and their families, supporting them right from diagnosis through to more advanced Parkinson's. I also enjoy the team approach to Parkinson's care."

Sion: "As a trainee in Geriatric Medicine, I was drawn towards movement disorders for a number of reasons. It is a very clinical specialty with a strong multidisciplinary team ethos and the varied nature of the clinical presentations of Parkinson's is endlessly fascinating.

"Parkinson's is a long term condition, so you often get to know your patients and their carers very well, often working in partnership over many years to find pragmatic and holistic solutions to problems which are sometimes very complex."

2. Why take of a leadership role with the UK Parkinson's Excellence Network?

Sally: "Prior to moving back to Wales, I was involved with the West Midlands Excellence Network and experienced first-hand the benefits of linking with other Parkinson's professionals in the area - from sharing clinical knowledge, to helping each other with service development and advocating for our patients collectively.

"When the previous leader of the network within North Wales retired, it seemed the perfect opportunity to become more actively involved in this myself."

Sion: "Taking a leadership role is important in order to give our patients a voice and to have a stake in driving through improvements and maintaining standards.

"It is also a great opportunity to learn from colleagues in other parts of the country, allowing us to replicate areas of good practice locally."

3. What is the biggest difference we can collectively make to further improve Parkinson's care in the UK?

Sally: "Collectively, we can advocate for our patients and help to ensure that their issues are properly resourced. Many people with Parkinson's have communication or cognitive issues and are unable to get their voices heard. Through working together, we can help with this."

Sion: "There is still lots of work to do on the inpatient management of Parkinson's. Although it is a relatively common neurological condition, there is still a lot of ignorance about Parkinson's amongst non-specialists. Missed doses or incorrect timing of medications are a frustratingly common problem. The Get It On Time campaign has been fantastic but we need to support this by a continuous process of education and increasing awareness at our local hospitals."

1. What Made you interested in working in the field of Parkinson's?

"In my early training in Neurology in Belfast I was fortunate to work with the late Dr Mark Gibson (Consultant Neurologist) who developed the field of Movement Disorders within Neurology in Northern Ireland through the development of a Regional Movement Disorders service at the Belfast Trust. He encouraged me to pursue this area of Neurology and to develop it within the National Health Service. 

"Dr Gibson had an eye for detail and was an accomplished clinical teacher who inspired many generations of doctors in training who worked with him, observing his absolute dedication to his patients throughout their entire journey with a particular Neurological condition such as Parkinson's. I thoroughly enjoyed his clinics and meeting his patients and thus I began to develop my own interest in Movement Disorders. I shared his fascination with genetics and I realised that there was a significant genetic component to Parkinson's disease, particularly in those developing the condition early in life.

"I was fortunate to later be appointed the first Dublin Academic Medical Centre Fellow in Movement Disorders at the Mater Misericordiae University Hospital and St Vincent's University Hospital in Dublin, working with further inspirational and indefatigable teachers, Professors Tim Lynch and Michael Hutchinson who encouraged and enabled me to develop my interest in the genetics and management of Parkinson's disease and other movement disorders." 

2. Why take on a leadership role with the UK Parkinson's Excellence Network? 

"As doctors we learn from our patients and from each other. The Excellent Network offers the opportunity to try and develop NHS services further by sharing ideas and learning. Whilst we may find it challenging to bring about change as individuals, as a network, with a united voice we can ensure the future development of services for Parkinson’s within the NHS."

3. What is the biggest difference we can collectively make to further improve Parkinson's services in the UK? 

"I think we need to make sure that those with Parkinson's, no matter what their age or where they live can access the highest quality of care from the point of first symptoms, to diagnosis and beyond.

"I think this can only be achieved when those who are passionate about this condition work together with a common purpose and simple message-only the highest quality of care is good enough."

clare, as A Health Care Professional living with Parkinson's, how have you used your insights to help educate colleagues and support other people coping with the condition? 

Clare: "At a very basic level I have been working with our outpatient nursing and reception staff to develop their better understanding of the condition. This is part of a bigger initiative within Surrey & Sussex Healthcare NHS Trust to improve the experience of patients attending clinic who have Parkinson's.

"I aim to ensure that our care staff understand that this is not just a disease that causes tremor and stiffness, and that an expressionless face may not mean someone is angry or miserable, that requests for the toilet may require speedy assistance, that patients may not be able to hurry and they need to be given plenty of time. 

"In addition I have taken the opportunity, where possible, to share my story in the hope that others may understand a little more from my experiences.

"Within my community I have organised, with the support of Parkinson's UK, a 'Living well with Parkinson's' event that attracted huge interest from both people with Parkinson's and healthcare professionals locally. This year's event is scheduled for April." 

iain, What made you interested in working in the field of Parkinson's? 

Iain: "I think the thing that really got me interested was working with an inspirational clinician at the early part of my training in geriatric medicine. I had heard she was good, so volunteered to attend some clinics to see for myself!

"I was welcomed with open arms, had my own list of patients and importantly time to see them in detail and really learn from them about their condition and how to manage it. I learnt so much in that year that still sits with me today.

"Then as I progressed in my training I again came back to Parkinson's in one of my later posts as a registrar and this time was struck by the potential complexity of Parkinson's (mostly I think by having a better appreciation of the non-motor symptoms)." 

2. Why take on a leadership role with the UK Parkinson's Excellence Network?

Clare: "I realise that I am in a relatively unique position of being a health care professional with a neuroscience interest and also the experience of living with the condition. With that in mind I hope that my unique perspective can add value to those already working hard to make a difference for people like me. I guess I also have a selfish motivation to ensure that the services in my area are as good as they can be, for me and my ever growing network of local friends living with this challenging condition.

"I am passionate about ensuring that patients have confidence in their care and hope that I can use this platform to continue to ensure the patient remains at the heart of all we do.

"Sharing the leadership role with Dr Iain Wilkinson is a huge privilege and I hope together we will make a strong team, gaining new knowledge from others in our region."

Iain: "I have been aware of the excellent work that Parkinson's UK does for people living with this illness but not really aware of the work in of the Excellence Network until recently. Prior to working in Parkinson's, I was clinical lead for a region-wide hip fracture improvement program that brought work teams together to learn with each other and improve their performances. I felt that this was/is a way forward for region wide Parkinson's care improvement and so when I saw that this post was available and had been free for a while it was too good an opportunity to let pass by!"

3. What is the biggest difference we can collectively make to further improve Parkinson's care in the UK?

Clare: "Apart from driving a huge fundraising agenda that will support the research and development of more treatments and ultimately a cure, the biggest difference we can make is to all work collaboratively. Keeping ourselves abreast of new developments, supporting research, sharing best practice, standardising our approaches, and helping one another to deliver the very best evidence based and compassionate care.

"We need to be a strong and united public voice supporting initiatives that we know make a difference for people with Parkinson's; basic stuff like driving the exercise agenda, ensuring medication is given on time, ensuring self administration of medication is supported where appropriate in hospital, that there is MDT support in all Parkinson's clinics, and that all patients have access to Parkinson's specialist nurses and community resources.

"Often overlooked is the growing need for robust support for our carers, and acknowledgement of the impact that this cruel condition has on them and the social isolation it often creates."

Iain: "I think collectively we can improve our team working and remove some of the silo patterns of working we see. A big part of this I think is knowing your team members and making sure your aims are all aligned with the patient at the centre of your care - whichever organisation you happen to be employed by - ultimately the patient does not care! It is our job to work in a cohesive team. From this then springs better communication and a better experience for the patients we work with."

1. What made you interested in working in the field of Parkinson's?

"I qualified as a Registered Nurse in 2000, starting my first job in Neurology and developed a personal interest in Parkinson's right from the start.

"I continued working in Neurology and Neurosurgery and after many years became the Ward Manager for the Neurosciences Unit in Oxford. My interest in Parkinson's continued to grow and I was fortunate to experience first-hand the perioperative care of people undergoing deep brain stimulation as well as other surgical interventions for Parkinson's and non-oral drug therapies.

"In 2011 I moved away from the acute setting and set up the first Community Neurology Specialist Nurse Service in Oxfordshire. Although I set up and led the service supporting people with long term neurological conditions, I was able to continue with my passion for supporting people with Parkinson's by working clinically within the team as a Parkinson's Nurse.

"Working in the community and seeing many of our patients in their own environment really helped me recognise and understand the daily challenges faced by people living with Parkinson's and the impact it has on their families."

2. Why take on a leadership role with the UK Parkinson's Excellence Network?

"I am very excited to be taking on this role and hope to continue the work initially lead by Dr Michele Hu. I see the Network very much a team effort, as everyone who is part of the Excellence Network has one mutually shared goal – to deliver the best possible care and support for those living with Parkinson's.

"As well as keeping up to date on the research field, I see the Network as a great opportunity to share ideas, look at what currently works well in practice and how we can build on this. I am particularly keen on bringing together disciplines from the multi-disciplinary team and learning about how their roles help support patient centred care. Listening to people living with Parkinson's and their families is also a crucial part of this.

"My role is to lead and support the local Thames Valley Network and communicate and share ideas and practice between the local and national Excellence Network groups."

3. What is the biggest difference we can collectively make to further improve Parkinson's services in the UK?

"Recognising and acknowledging all the fantastic services that are currently out there for people with Parkinson's, as this forms a good foundation to build on and help map out the future.

"There will always be restrictions due to resources and budgets, but with good communication and access to networking, lots can be achieved and shared both locally and across the UK to help improve the quality of life of those living with this long-term condition."