Could discreet pumps, constantly providing adjustable doses of your top Parky drugs, be the future of 24-hour care? That's one of the suggestions made by advocates of a new range of pumps, one of whom, Professor Ray Chaudhuri (aka the Judge's neurologist), joins the Movers and Shakers in the Notting Hill pub. And if that's not a sufficiently bumper discussion, Prof Chaudhuri also discusses a new project that's he's developing: a Parkinson's dashboard to help make sure that new patients are asked all the right questions in the weeks after a diagnosis.
By Podot
Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.
Guest Biography
My research concerns Parkinson's Disease and in particular, pioneering work on defining non-motor symptoms and non-motor phenotypes of Parkinson's disease. I am considered a world leader in non-motor aspects of Parkinson's people-based research. To date, I have published over 350 peer-reviewed papers, several book chapters on Parkinson's Disease, restless legs syndrome and dystonia. I am also the director of Parkinson's Foundation Centre of Excellence at King's, Research Director and Assistant Medical Director at King's College Hospital.
For more information visit KCL.
AN EPISODE IN TWO PARTS
Prof Ray Chaudhuri
Levodopa pumps
So far as Parkinson’s is concerned, the first pump delivered the liquid agonist apomorphine through the skin and was commercialised in the 1990's. Then in about 2007 came the duodopa pump, a bulky thing which delivered levodopa into the small intestine.
Technology has moved on in leaps and bounds. Now we have state of the art small programmable pumps: produodopa (skin and 24 hrs infusion ) and lecigon (in gut).
Produodopa is made up of 2 ingredients, foslevodopa and foscarbidopa. Foslevodopa is a type of levodopa. It is a decarboxylation inhibitor which improves the performance of Foslevodopa and also reduces its side effects. A small pump is used to deliver a steady dose of Produodopa 24 hours a day from a syringe attached to a cannula.
Lecigon is an intestinal gel formulation of levodopa, and two enzyme inhibitors carbidopa and entacapone. It is delivered by a pump to the duodenum or upper jejenum (these are the first and middle sections of the small intestine). The pump can be programmed to deliver variable flow rates and bolus doses. It can also be removed and patients can bathe, shower or swim. They are extremely effective, even transformative. I have videos of patients before and after they went on the pump and the change is extraordinary.
These pumps are not curative however. We know that the principal charities have a very specific definition of cure which is: slow, stop or reverse and these pumps don’t do any of those things. But they are likely to be a game changer in the management of the condition.
The King’s Parkinson’s Fund
In advancing this project I am not in any way at all parking my tanks on the lawns of the two main charities.
Let’s go back to basics...
Parkinson’s disease is a progressive neurodegenerative condition which can develop at any age, but which mainly affects those over 60.
From 1990 to 2015, the number of people with Parkinson’s disease doubled to over six million.
This number is projected to double again to over 12 million by 2040. It is the fastest growing neurological condition in the world (perhaps any condition).
The condition has over 40 different symptoms, meaning it can be difficult to diagnose.
In the UK, someone receives the devastating news that they have Parkinson’s every two hours.
For a long time I have been particularly concerned by the curious obscurity of the non-motor symptoms of Parkinson’s.
Out at sea, only a small part of an iceberg is visible, with most of it concealed below the waterline. So too with Parkinson’s disease. Symptoms are not confined to the shaking, freezing, shuffling, and drooling which everyone can see. Additionally, there are numerous other distressing and restrictive non-motor symptoms hidden below the metaphorical waterline, requiring several different medications. These include:
anxiety
apathy
bone problems
constipation
depression
fatigue
gut problems
hallucination
impulse control disorders
insomnia
memory loss
mood issues
nightmares
oral problems
pain
sexual problems
sleepiness
...to name but a few.
These hugely affect the day-to-day quality of life of the Parky. I have been working for a long time on addressing the relief from these symptoms and I have decided to take my work to another level by founding this Fund, which is a sub-fund of the main King’s College Hospital Charity.
The first and most fundamental objective of the project is to roll out standardised diagnostic questions which a suspected Parky should be asked before the critical first meeting with the clinician, and on each subsequent review. The questions will address the five “vitals” that must be identified and managed namely:
motor symptoms
non-motor symptoms
vision, gut, and oral health
bone health and falls
comedication and comorbidities
These questions and their answers are the dashboard, which is the concept at the heart of this project. It is a fact that the majority of clinicians do not comprehensively ask questions of the PwP covering all five vitals. If they did, much delay would be avoided and risks faced by PWPs limited.
At the moment use of the dashboard is non-digital i.e. pen and paper. Our first project is to digitalise the dashboard within a wellness app. The most frequent and bitter complaint made by PwPs concerns the extreme delays experienced in getting to see a specialist physician both initially and subsequently. Digital diagnostic standardisation should result in a significant increase in efficiency by physicians and allied professionals, benefitting both patients and the NHS Consultations will shorten, as the key information will have been elicited from the PwP beforehand. Reviews will often be able to be held remotely.
The upshot will be that the first ask in the Movers and Shakers Parky Charter - speedy access to a neurologist both first time round and subsequently – will be promoted by the use of the dashboard. Given that apathy is a very common symptom of Parkinson’s the app will be designed to be extremely simple to use. If the PwP is sufficiently tech savvy the app will be downloaded onto their computer, tablet or smartphone and they will complete the questionnaire on the app at home, prior to the meeting. If they are not technologically savvy, PwPs will complete the questionnaire on one of the clinic’s tablets in the waiting area prior to the meeting. Either way, the app will generate a report for the clinician which the clinician will access before the consultation. The app will prompt the clinician to address the questions on the dashboard to the extent that they have not yet been answered.
In due course the app will be developed
to track symptoms passively with the data from such tracking being transmitted to the clinician, and
to provide an essential holistic package for the care of Parkies, including, for example, performative modules for physical exercise, oral care and speech exercises.
It should be launched no later than next Easter – look out for it!
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