During a captivating 2 days at European Neuro Convention, an event which took place at the ExCel London from 6th–7th June 2018, the European Medical Group spent time with one of the speakers, Dr Katherine Baker, to discuss the creation of the Parkinson’s UK Exercise Framework. Dr Baker was heavily involved in the creation of these new guidelines and she provided further details during her presentation at European Neuro Convention. The framework assists healthcare and exercise professionals in providing the best possible advice to people with Parkinson’s about exercise, which is a vital aspect of managing this progressive neurological condition. Dr Baker has extensive knowledge in the use of physiotherapy to manage Parkinson’s disease; she previously worked in a clinical setting as a physiotherapist, helping people with neurological movement disorders and the elderly, and now holds the position of Senior Lecturer in Physiotherapy at Northumbria University, Newcastle, UK. In this role she has contributed to numerous research projects about the efficacy and best practice of physiotherapy in Parkinson’s disease. During our discussion, Dr Baker gave us further insights into the creation and implementation of the Parkinson’s UK Exercise Framework as well her views on the evolving role of physiotherapy in the management of neurology patients more generally.
Physiotherapy in Parkinson’s
The importance of physiotherapy for the management of movement disorders, such as Parkinson’s, is becoming increasingly recognised as crucial to slowing down the deterioration of symptoms and enabling patients with the condition to enjoy good quality of life for a lengthy period. The disease has no cure and progressively worsens over time. The primary symptoms are movement issues, including with gait and balance, and tremor.1 The role of physiotherapy is therefore to prevent these problems becoming debilitating.
“I think the role of physiotherapy has definitely broadened over recent years,” said Dr Baker. “Whereas we used to be the people who picked up the pieces after a particular challenge or deterioration, we are now involved in a much more proactive approach. So, for a long-term condition like Parkinson’s, we’re very much involved from diagnosis, with a preventative, health-promotion kind of role.”
Dr Baker was inspired to work in neurological physiotherapy after observing the major impact physiotherapists had on the lives of neurology patients and the close bond that often develops between the two. She elucidated: “I was really struck by the way that they didn’t just give physiotherapy to people, they worked with people to problem solve and figure out how they could access the kind of life they wanted to live. I found that really inspiring and the relationships that were built between the physios and the patients was something I wanted to be part of.”
Parkinson’s UK Exercise Framework
Providing patients with the tools and knowledge to self-manage their condition is a major aspect of physiotherapy in conditions such as Parkinson’s. This is the ultimate purpose of the Parkinson’s UK Exercise Framework, published in October 2017, which aims to assist the care provided by both health and exercise professionals.2 The framework was developed largely due to feedback received from people with Parkinson’s about a lack of a coherent and consistent message about the types of exercise they should be undertaking. Dr Baker explained that this a major problem for those Parkinson’s individuals who lack the knowledge and self-confidence they need to incorporate an appropriate exercise regime on a day-to-day basis. Aside from helping with some of the physical symptoms of Parkinson’s disease, exercise is also important for improving the mental health and psychological issues that often occur in people with the condition.3
Aim of the Framework
The symptoms of Parkinson’s are also often barriers to exercise for many with the condition. Difficulties in dual tasking and mobility hinder many types of exercise and other symptoms such as stiffness can make physical activity painful. Additionally, the symptoms are often unpredictable, meaning it is difficult to plan ahead. The framework seeks to provide consistent advice rather than be prescriptive, ensuring the differing priorities of people with Parkinson’s and the varying symptom severities are recognised.
“We engaged with a lot of people with Parkinson’s around gathering examples of what exercise people would be using and the benefits that they associate with that kind of exercise,” explained Dr Baker. “We kind of had anything and everything really; we had people who had exercised all of their lives and then been diagnosed with Parkinson’s, so helping them to continue, sometimes in a modified way, with the activity they always enjoyed, whether that be cycling or yoga or anything else. Then there were people who had found exercise because of their Parkinson’s, looking for something to help them manage their symptoms, so they might benefit from a Parkinson’s-specific exercise group, one of the organised and tailored exercise approaches. But what really came through loud and clear was that there wasn’t a one-sized-fits-all approach; it was really about what people liked to do. For example, it might have been what they liked to do with their family and what motivated them for the exercise to become a habit, because it is so important for it to become part of their day-to-day and it wasn’t something that they tried once and didn’t do again, because that can be quite disheartening I think.”
She continued: “So we’ve tried to avoid building into the framework prescriptive messages like ‘do this particular class’ but instead give messages around the kinds of exercise that we know are helpful and then give examples of how you might get these benefits, such as lots of stories about what others have done to try and cater for that individual need.”
After taking these issues into account, the framework was produced in a three-tier format according to disease stage and symptom severity. The first of these is called ‘Investing in exercise from diagnosis onwards’, which places an emphasis on establishing the habit of regular exercise early after initial diagnosis to slow the progression of Parkinson’s. The framework makes it clear that this is the optimal time to establish physical activity routines, particularly if the symptoms are mild at this stage. It is strongly recommended that the exercise is enjoyable and sociable, incorporating activities that require a number of participants.
The next stage is named ‘Staying active’ and is aimed at individuals who are beginning to experience movement problems as a result of Parkinson’s, such as stiffness and balance. The framework places a greater emphasis on exercises that promote strength and flexibility, such as yoga. It also outlines that the exercise should be channelled to improve non-motor symptoms that are likely to emerge at this stage, including psychological factors like mood.
Finally, the third tier, ‘Managing complex (physical) challenges’, is for people whose symptoms have deteriorated to an extent to which everyday physical activities have become problematic. The exercise included at this stage should therefore ‘pay attention to specific physical functions that focus on daily activities such as getting up out of a chair, turning, or walking safely’, in addition to helping to maintain general fitness and strength. There is a much greater focus here on home-based exercises as well as Parkinson’s-specific sessions; for example, supervised balance and mobility challenge classes. There are a range of examples given within each tier, ensuring that the framework caters for differing patient needs.
While it is too early for any formal evaluation to have been completed about the impact of the framework so far, Dr Baker commented that there has been positive feedback from healthcare professionals who have utilised it to help those with Parkinson’s, ranging from clinicians to physiotherapists. The fact that people diagnosed with Parkinson’s can now receive a consistent message about their exercise, both from their doctor and for themselves, appears to be the key to this apparent success. “As a professional you can give your advice and then advise people to go and have a look and see what might work for them, and that’s been seen as a big positive. But the structure of the framework being easy to follow and transparent and flexible is the positive feedback that we’re getting so far,” said Dr Baker.
The overarching theme of the framework is the promotion of supported self-management and patient centricity, and these are concepts Dr Baker is particularly passionate about. In her view, the key to physiotherapy is understanding a patient’s individual needs, as well as being able to empathise with the issues they face. “I think the more understanding there is, the better relationship we have, the better we can work together to find a way forward,” she commented. “Physiotherapy doesn’t work unless it’s patient-centred, and it’s just finding ways around some of the obstacles to that.”
The concept of patient centricity is a major aspect of the research Dr Baker is undertaking with colleagues at Northumbria University, an institution with a strong reputation for its work on Parkinson’s disease. For example, Dr Baker was part of a team that developed a technique involving the use of auditory and visual cues to help individuals with Parkinson’s to walk by improving their balance and gait.4 She informed us that the team works very closely with a group of people living with Parkinson’s; this helps the researchers to choose topics that are most closely aligned with the needs of this cohort.
Emphasis on Self-Management
Overall, she is pleased that there is now a greater acknowledgement in the clinical setting of enhancing patient centricity with techniques such as physiotherapy, in comparison to her earlier career in that area. “I certainly think there’s a much greater emphasis and focus on more person-centred approaches and really trying to empower patients towards more of a self-management model,” she commented. “But we just need to be really careful to stress that this has to be supported self-management and not just handing the book over to people to go away and get on with things. But I’ve certainly seen that shift happening and it’s a really positive thing if it’s done well.” To ensure further progress is made in this direction, Dr Baker emphasised the importance of providing physiotherapists working in this area with flexibility and autonomy so that they can individualise care as much as possible.
It was illuminating to speak with Dr Baker about the Parkinson’s exercise programme and her work in physiotherapy for people with Parkinson’s. Parkinson’s disease was a major topic at the recent European Academy of Neurology (EAN) Congress, which took place in Lisbon, Portugal from 16th–19th July. This event will be reviewed in the upcoming edition of the EMJ Neurology eJournal, along with Editorial Board interviews, peer-reviewed papers, and much more, and will be published in August. As with all of our eJournals, this will be available for free as an open-access publication on our website. You can subscribe here for free to receive instant news of its publication.
- Mazzoni P et al. Motor Control Abnormalities in Parkinson’s Disease. Cold Spring Harb Perspect Med. 2012;2(6):a009282.
- Parkinson’s UK. Parkinson’s Exercise Framework. Available at: https://www.parkinsons.org.uk/information-and-support/parkinsons-exercise-framework. Last accessed: 27 June 2018.
- Parkinson’s UK. Parkinson’s and Mental Health. Available at: https://www.parkinsons.org.uk/information-and-support/parkinsons-and-mental-health. Last accessed: 27 June 2018.
- Northumbria University. Northumbria University researchers help people with Parkinson’s to walk. Available at: https://www.northumbria.ac.uk/research/case-studies/northumbria-university-researchers-help-people-with-parkinsons-to-walk/. Last accessed: 27 June 2018.