Dan Keller 0:09
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Parkinson's disease has many facets, including motor and non-motor symptoms, cognitive issues, social and emotional aspects, and how best to get by in daily life and activities that one enjoys. Oftentimes, a person with PD finds him or herself visiting several health professionals, including physical therapists, speech-language pathologists, and neurologists, and can often feel frustrated when there is a lack of communication between the different disciplines within a care team. With a multidisciplinary team approach often found at Parkinson's Foundation Centers of Excellence, healthcare professionals are specifically trained to help with all aspects of the disease and work together to make life easier for the person with PD. Teams typically involve movement disorder specialists, who are neurologists with extra training in movement disorders like PD; nurses; physical, occupational, and speech-language pathologists; and social workers; but other healthcare and allied health professionals can participate routinely or as needed. I spoke with Dr. Rob Skelly of the Royal Derby Hospital in the United Kingdom and asked him about the makeup of his team and how they approach treating their patients. What is multidisciplinary working as it applies to Parkinson's disease, and should it really be called interdisciplinary? These people do interact, don't they?
Dr. Rob Skelly 2:19
That's right. So the multidisciplinary service that we have at my hospital consists of a consultant physician, a Parkinson's nurse, an occupational therapist, and a physiotherapist. We have a clinical psychologist, a dietitian, and we also work quite closely with a consultant in old-age psychiatry and a consultant in palliative medicine. So your question was about multidisciplinary care and interdisciplinary care. So we meet regularly as a team. We have a meeting once a week after the main clinic of the week. That meeting, where all the team members gather and discuss cases, I think that really makes it an interdisciplinary service. Not all the members of the team are there every week, but certainly the consultant and the Parkinson's nurse and at least one therapist is present.
Dan Keller 3:18
How do the different disciplines provide care over the course of the disease?
Dr. Rob Skelly 3:23
When I talk to other people about organizing Parkinson's service, I often break the disease down into four stages to think about: the diagnostic phase, when the diagnosis is being made and delivered, and perhaps there are some issues there with adjusting to a new diagnosis of Parkinson's; I talk about a maintenance phase where people are getting used to their medications and things are usually going quite well for them at that point; then there's a complex phase where various issues are arising, maybe with mental health or difficulty with movements; and finally, a palliative phase. And I think in each of those stages of illness, it's important that there are services available for people with Parkinson's.
Dan Keller 4:13
Is there evidence that there's better outcomes when you use this sort of approach?
Dr. Rob Skelly 4:18
There is some evidence from Holland that multidisciplinary care for Parkinson's is more effective than care provided by a consultant neurologist. But I think to say that the kind of care that we provide, where we have a full multidisciplinary team—to say that that kind of care is better—I'm not sure that the evidence is there, but we certainly have faith in that model.
Dan Keller 4:42
What's the difference between your full multidisciplinary team and, I guess, an abbreviated one?
Dr. Rob Skelly 4:49
I think the main difference from the ones that have been studied and published is the involvement of therapists, so a physiotherapist and an occupational therapist. I believe they're important members of the team and certainly add to the care that's provided. So going back to one of the questions you asked me earlier about what the roles are of these people in Parkinson's and different stages of illness: I think even in early stage, just after diagnosis, a physiotherapist, for example, can encourage people to exercise more and advise them on appropriate exercise, and there's increasing evidence that exercise can be beneficial for Parkinson's and may even delay progression of other symptoms. And I think an occupational therapist can be helpful, particularly in the more complicated stages when they can advise about difficulties with certain activities of daily living. So for example, they can look at the way people manage everyday functions like getting in and out of bed, making a cup of tea, getting dressed, managing on the toilet—that kind of thing. An occupational therapist is very skilled in those areas, and they also can help with monitoring of mood and assessment of cognition. So I think the full team really adds to the care of a person with Parkinson's.
Dan Keller 6:12
Does the full team get together on a regular basis?
Dr. Rob Skelly 6:16
We have a weekly meeting where many of the team gather, and then we also have team meetings about three or four times a year where we set aside a couple of hours to meet and discuss things to do with the development of the services. Even a good service can always improve. So we look at issues with care and see if we can make things better for the people with Parkinson's that we serve.
Dan Keller 6:41
Who's the band leader? Is there someone who kind of keeps this cohesive and moving?
Dr. Rob Skelly 6:47
I think if I had to pick one member of the team, I'd say it's the Parkinson's nurse who helps really coordinate things and keep people working together.
Dan Keller 6:57
Are there potential barriers to implementing a full team like you have?
Dr. Rob Skelly 7:02
I think the way care is organized will depend to quite a degree on the way that services are funded, and that's going to vary a lot from country to country. So I think in the UK, we have services provided by a National Health Service, which is free at the point of delivery and is paid through general taxation. And I understand services are provided differently in other parts of the world. Certainly, most people that pay for health services want to see the evidence of efficacy before they will provide funds for those things. So I think it is important that research is done to help bolster evidence that this kind of model is effective and cost-effective.
Dan Keller 7:44
How does the patient interact with all these people? Do they see them as needed, or see lots of therapists on every visit? And then what do the therapists do—get together and discuss the case?
Dr. Rob Skelly 7:56
Yeah, that's a good question. I think our ideal model, from a service provider point of view, was to encourage people to see the physiotherapist, occupational therapist, nurse, and doctor all on the same visit. But we got feedback from our patients that sometimes that was quite a tiring day for them, particularly the more elderly people that were coming to the clinic. So we're quite flexible with that nowadays, and we often break it into a two-day appointment. So on one day, people have assessments by their physio and the occupational therapist, for example, and they come back then maybe a week or two later and have an appointment with the nurse and the doctor. The therapy assessments are then available at the second visit, so the doctor or nurse knows what's going on.
Dan Keller 8:47
You're in the United Kingdom. Are these services readily available in most places?
Dr. Rob Skelly 8:53
I think all the services I've mentioned—the different members of the multidisciplinary team—I think patients throughout the United Kingdom can access those services. But the degree to which the services are well-integrated and where teams meet together, that does vary quite a lot from place to place. And I would say maybe only 15 to 20% of services in the UK are well-integrated like the service that I come from.
Dan Keller 9:21
You had mentioned the four stages, the first of which was diagnosis. So it sounds like the team approach should start very early in the disease.
Dr. Rob Skelly 9:31
I think that's right. And I think, as I indicated, certainly early physiotherapy is something that we're very keen on. And for certain patients, particularly those who are maybe struggling to adjust to their new diagnosis, then support from an occupational therapist or a psychologist can be important too. All those team members are important in providing education for patients and their carers. And I think information is power, so that really helps people if they've got a good understanding of their illness, which is, as we know, a chronic illness—an illness that's going to be with them for the rest of their lives. So it's really important that they have a good knowledge of Parkinson's, of the symptoms, of the treatments available, and the people available to help them.
Dan Keller 10:15
It sounds like their interaction with the team would vary depending on the stage of the disease: a lot at the beginning so they can get all the education, and then I would assume it drops off for a while and peaks again. So how often should they see them or interact with them?
Dr. Rob Skelly 10:32
So we recommend that people see the team at least once a year. Some patients are seen more frequently than that, and there's a tradeoff really to be made between being able to provide good monitoring. So for example, patients coming back fairly frequently every, say, three or four months or every six months—that's a good service for people, and I think people with Parkinson's would be reassured by that kind of monitoring. On the other hand, we find that if we did that for everyone—if we saw everyone every three or four months—then when someone was in crisis and needed to be seen next week or tomorrow, then we wouldn't be able to see them because we'd be snowed under with routine follow-ups. So there's a little bit of a tradeoff to be made there. So we recommend at least once a year for monitoring purposes, and so that we can see people more urgently if that's necessary.
Dan Keller 11:26
Is there anything important to add that we've missed?
Dr. Rob Skelly 11:30
I would say, from a perspective of a person with Parkinson's, it's important that if you're being looked after by professionals who perhaps don't work very closely as a team, it's important that you become a team member and you help communication between the other members of the team. So for example, you can do that by keeping copies of reports and letters and showing those to other members of the team that might not be up-to-date with what's happening. So for example, if a physiotherapist has seen you and recommended certain exercises, then that might be relevant to an occupational therapist who's seeing you, or the consultant, the neurologist, or geriatrician who's seeing you.
Dan Keller 12:21
Very good. Thanks a lot. To find out more about multidisciplinary care, visit parkinson.org/professional-resources. Here you will find a guide to educational resources segmented by discipline, including webinars, fact sheets, and courses relevant to both members of a multidisciplinary team and people with Parkinson's and their care partners.
As one of our signature health professional courses, the Parkinson's Foundation hosts the Allied Team Training for Parkinson's, or ATTP program, an intensive three-and-a-half-day course designed to increase knowledge about Parkinson's disease and build capacity for comprehensive, patient-centered care. Intended for health professionals involved in all aspects of caring for people with PD, ATTP has trained more than 2,300 health professionals on the importance of interdisciplinary care. If you're a health professional seeking to further your education about care challenges and management of PD, visit parkinson.org/attp to view future training sites, including ATTP Minneapolis in the fall. Scholarship opportunities will be made available for eligible applicants from the Heartland area.
Members of the Parkinson's community can also help spread the word about this professional development opportunity in their communities, encouraging clinicians they see to consider attending. If you're a physical therapy or nurse educator interested in preparing the next generation to better care for the growing population of people living with PD, we encourage you to apply to our Physical Therapy Faculty and Edmond J. Safra Visiting Nurse Faculty Program at the Parkinson's Foundation. For more program information, please visit parkinson.org/professional-education.
As always, our PD Information Specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life. Today, to that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
