Taking the weight out of the waiting list - setting up a Home Based Care Pathway for people with Parkinson’s

Emma Edwards is a Mental Health Nurse by trade but has been a Parkinson’s Specialist Nurse for the last 10 years. She currently works in the community in Plymouth, alongside the Parkinson’s team lead, Dr Camille Carroll.  

As I write this, we are in the grip of a pandemic lockdown. My clinic-room appointments have been postponed and home visits have been restricted. Of course, I am concerned for the people on my caseload, most are whom are self-isolating or strictly social distancing. However, I am less anxious for those who were started on our new Home Based Care Pathway last year and in the early part of 2020. I’ll tell you why, if you have a spare moment between Zoom meetings or finding a face mask……

Back in 2018, Parkinson’s nurses, Consultants, people with Parkinson’s, their families and healthcare design engineers (who knew that job existed?) met and had a discussion through the medium of Lego. It was an odd, challenging and eye-opening meeting but what emerged was shared dissatisfaction regarding overly long waiting lists, missed opportunities to handle crises and a general lack of information on the illness. People living in rural areas found travelling tens of miles for review bothersome, and Parkinson’s nurses expressed frustration that having such big caseloads meant that being responsive to those most in need was challenging and stressful.

Learning through Lego that day was the foundation stone for developing a new way that the Parkinson’s teams in East Cornwall, Plymouth and West Devon would start working with a selection of people with Parkinson’s (PwP). More sessions and workshops followed, always with representatives from PwP and their families. After all, what’s the point of designing a new way of working, if the people that use it find it clunky and hard to navigate?

We all felt strongly that PwP should be at the centre of this new process, and this meant a diversion from healthcare instigated face-to-face reviews , and putting the PwP in charge of initiating contact.  For this to work, PwP needed the tools to make informed choices, and so the three strands of the Homebased Care Pathway emerged: giving PWP information to self-manage and evaluate their symptoms, knowledge of when and how to trigger a contact, and home monitoring with digital health technology.

Resources were developed into a pack which is given to each patient when they start the pathway. The pack contains guidance on how the pathway works and what to expect, cards on common PD symptoms so people can identify and track their condition, signposting for how to manage symptoms, a guide on Parkinson’s, details of local support and exercise groups to attend, and how to access a specially devised Facebook group. Patients start their journey with a training session led by the Parkinson’s nurse, who pulls all the information together and provides a reminder on how to avoid or best manage an acute crisis. Crucially, patients are given clear information on how to get in contact with their Parkinson’s team. If a review is needed, it is offered in a timely way (within 2 weeks) either with the Parkinson’s nurse or Consultant.

The final part of this pathway is being able to monitor motor and non-motor symptoms throughout the year. This is undertaken routinely by the PwP wearing a Parkinson’s Kinegraph (PKG) watch for a week (to measure movement in relation to doses of levodopa) and completing questionnaires which keep an eye on issues such as sleep and anxiety levels. These are sent out to the PwP every 6 months or so, and then reviewed by the local PD team on return. This may or may not flag up a need for issues to be addressed.

Video appointments hadn’t featured in our plans before COVID 19 raised its ugly crown, but is now becoming a useful, quick means of review for some and so we will probably carry this on for those that find it helpful.

In summary, my patients on this pathway are well-reviewed, up to speed on their condition and know how to access assistance in a timely way, not just from the Parkinson’s teams but from a range of external sources such as social media and local groups. There is ongoing tweaking of learning resources from the feedback we gain along the way, but so far it seems to be an effective way to replace routine follow-up clinical appointments for those in the early/maintenance phase of the condition.

If you would like to access further information on the Homebased Care Pathway, please either contact myself on emma [dot] edwards17 [at] nhs [dot] net , or have a look on Twitter @ParkinsonsHBCP.