We are proud to announce that two major figures in treating and raising awareness of Parkinson’s Disease have launched a new charitable fund - King’s Parkinson’s - which is designed to bring this debilitating ‘Cinderella’ condition in from the cold.
Professor K Ray Chaudhuri, Director of King’s Parkinson’s International Centre of Excellence and our very own "Mover & Shaker" Sir Nicholas Mostyn, have joined forces to fundraise and focus awareness on better research and treatment for Parkinson’s. Its guiding principles can be encapsulated in just two words: Iceberg and Dashboard.
One major problem for people with Parkinson’s (“Parkies”) is the lack of regular consultations with clinicians. Evidence given to the Movers and Shakers' podcast suggests that many people have to wait more than a year to see a neurologist. These delays inflict intense emotional pressure on Parkies and harm their long-term prospects, as essential aspects of care are not dealt with promptly. This is why our very own Charter rightly has as its first demand, a plea for speedy access to neurologists both first time round and subsequently.
The KP Fund’s logo is based on the image of an iceberg. Only a small part of the iceberg is visible, with most concealed below the waterline. The same is true of Parkinson’s symptoms. Non-medics will perhaps notice the Parky shaking, freezing or shuffling but be unaware of numerous other distressing and restrictive non-motor symptoms:
The KP Fund will encourage physicians and allied health specialists to provide consistent, evidence-based holistic care of Parkies using recognised standards. These should promote national and international consistency in diagnosing non-motor aspects of Parkinson’s by standardising, as far as possible, the evidence considered, the analysis of that evidence and the diagnosis given, as well as the ensuing care plan.
Such care plans would encompass not just the well-known motor symptoms of Parkinson’s Disease, such as tremor, rigidity, freezing and shuffling, but also the less visible issues, such as gut, bone, and oral problems. The condition inevitably produces a range of unpleasant symptoms which can require several different medications.
Professor Chaudhuri has outlined this sort of strategy in his recently published Dashboard for Parkinson’s.
The KP Fund’s first project will be to develop standardised diagnostic questions which suspected Parkies should be asked before their first meeting with the clinician, and on each subsequent consultation. This way the bottom-of-the-iceberg symptoms will not be overlooked. This is integral to the five “vitals” in the dashboard .
Such consultations may be held remotely, at the clinician’s discretion.
The second project would be a digital adaptation of the dashboard within an app which patients can download to their smartphone or computer. The Parky will respond to the initial questions via this app which will transmit the data to a portal which the clinician can access before the consultation. Given that apathy is a very common symptom of Parkinson’s the app will be designed to be extremely simple to use.
The consultation will generate further data from observations and tests, and this too will be securely stored in the portal. The data will include the clinician’s diagnoses and recommendations for treatment of the Parky.
In due course, the app will also be able to track symptoms and the data from this will likewise be transmitted to the portal.
Via the app, patients will be able to access the doctor or health care professional for a remote discussion if the clinical appointments are fixed too far in the future, as is often the case. In this way, self-management will be promoted.
The result should be that clinicians can see Parkies in consultations which are shorter and more frequent than at present, yet which provide a greater range of accurate detail. Thus, the vital first meeting between the neurologist and Parky should be able to take place within weeks, rather than months or years.
One important derivative of this project will be the accumulation of a body of evidence about what living with Parkinson’s is really like for many Parkies. Such a body of evidence will be objectively reliable, in contrast to current evidence which tends to rely on anecdotal accounts. This evidence will be key to developing holistic treatment programmes for the full spectrum of symptoms, including especially the neglected non-motor symptoms. These holistic programmes will include advice to the Parky on diet, exercise, and social support. In due course the Parky should receive them via the app.
The KP Fund will therefore be raising money to pay for the technical work to complete these projects as well as to increase professional knowledge about the non-motor symptoms of the condition in other ways. KP will also fundraise to promote the training of trainees in the fields of non-motor research in, and care pathways for, Parkinson’s disease.
The KP Fund will not diminish the work being done to find a cure. However, for current sufferers the objective should be to alleviate current problems.
The KP Fund was launched internationally on 20 June 2024 at King’s College, Strand Campus, Strand, London, WC2R 2LS.
The Movers & Shakers are excited to hear more!
1. A sub-division of the main King’s College Hospital Charity.
2. The Parky’s personal data will only be accessible by the clinician, by any Parkinson’s nurse treating the Parky, and of course by the Parky via the app. This arrangement will comply with all data protection laws.
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