The Exercise Hub: Bringing exercise to the forefront of care

What need was there for the Exercise Hub?

Beccy: I know I was keen to make contact with others involved in exercise. Though I work exclusively with people with Parkinson's, I work by myself. So I don't have the opportunity to meet and share ideas with other physios to see what they were doing for their patients.

I contacted Parkinson's UK to see if it would be possible to be put in contact with other physios. I was thrilled that one of them was Bhanu as she has so much experience in this field.

Bhanu: Over the years, I've been involved with a number of special interest groups for physiotherapists including the Association of Chartered Physiotherapists Interested in Neurology, AGILE and the Association of Physiotherapists in Parkinson's Disease Europe. However the groups specifically for professionals with an interest in Parkinson's we pulled together in the early 2000s lulled as NHS priorities changed.

Through my work with Parkinson's UK, I knew that there were increasing numbers of physiotherapists running exercise classes for various local branches so it's clearly an area of interest. It seemed logical that this would be the focus of any Parkinson's-specific initiative to develop and share good practice.

Both through our own contacts and with some help from Parkinson's UK, we managed to find professionals from across the UK who were delivering exercise to people with Parkinson's in a group setting and/or in 1-2-1 consultations and were keen to promote and shape how it is provided. Beccy's enthusiasm ensured the Exercise Hub was created.

One thing we were determined to ensure was that the Hub should have an active purpose and not just be a talking shop. So it was made clear from the start that if you were going to be involved, you would be expected to contribute!

What did the group want to look at?

Beccy: Once we established a core team, we held our inaugural Hub meeting via Google Hangouts to talk about where we wanted to focus our energies. Recurrent themes seemed to be around exercise prescription, what evidence there was about exercise for people with Parkinson's and how to measure effectiveness.

We developed a survey to get information related to all areas as we wanted to find out where others were at and what they were doing locally. But it's been a challenge as we know ourselves that clinicians are so busy at the moment with competing demands.

However we would like to get more feedback so that we have the most robust information to work with. So if you want to share your experiences about any of these areas, please let us know! Fill in our Google form survey.

What have the team been working on?

Bhanu: We've been involved in Parkinson's UK's development of an exercise framework.

As clinicians, we know how beneficial exercise can be for people with Parkinson's but it can be very difficult to know what you should be advising people to do particularly with changing symptoms over time. Similarly people with Parkinson’s who are keen to exercise aren't sure what to do for the best.

Therefore I have been working with Parkinson's UK and core members of the Exercise Hub to create key overarching principles for exercise and Parkinson's as well as a more detailed guide about appropriate exercise strategies to address specific issues.

The wider group, which also includes a number of people with Parkinson's who exercise, has been helpful as both a sounding board to ensure that what's being developed will work in the real world and a source of information about different exercise approaches and the research evidence behind them. 

We're all excited about this work as it really does reinforce the idea that exercise is on a par with medication as a way of managing symptoms. The first draft of the exercise framework was presented to a group of key professionals and people affected by Parkinson's in April and it was well received.

Work is now being undertaken to incorporate the feedback from that day and create versions that can be disseminated more widely to both professionals delivering exercise interventions and people affected by Parkinson's along with supporting resources such as videos to help with its implementation.

More details about these will follow in the next few months so keep your eyes peeled!

What have you got out of the group? 

Bhanu: I think by nature, physiotherapists are do-ers and so working with others with a similar mindset is always a pleasure.

There are a few of us who have become known for our work with Parkinson's and while it's nice to be held in such esteem by others, it doesn't really help things change on the ground.

Knowing that we have a group who are committed to raising the profile of exercise in Parkinson's and ensuring good practice is shared certainly gives me hope for the future.

Beccy: Personally it's been so fantastic getting to know other people who are as passionate about what they do as I am. I've learnt so much already and I certainly don't feel as isolated as I did before.

Get involved

We're more than happy for others who are interested in exercise to get involved. So if you want to join us at the Exercise Hub, email [email protected] and ask to be added to the Exercise Hub Basecamp group.