Podcast Summary
Discussing the Importance of a Charter for People Living with Parkinson's: The group highlighted the significance of a charter for Parkinson's patients, sharing their personal experiences and emphasizing the importance of community and collaboration in finding solutions and support.
Learning from this episode of Movers and Shakers is that the group, which includes Paul Mayhew Archer, Nicholas Mostyn, Jeremy Panchman, Mark Maudel, Jidin, Lacey Solimar, and the podcast's host Rory Keithan Jones, discussed the importance of a charter for people living with Parkinson's. They revisited this topic due to its significance and the fact that they didn't reach an agreement during their previous discussion. The charter aims to provide guidance and support for listeners dealing with Parkinson's. The group shared their recent experiences, including Paul's deep brain stimulation surgery, Jeremy's unfortunate cruise experience, Mark's website development, and Judge's heli-skiing trip that didn't take off due to weather conditions. They also mentioned how Gillian's success in creating a charter for Parkinson's patients inspired them to revisit the topic. Overall, the group emphasized the importance of community and collaboration in finding solutions and support for those living with Parkinson's.
Recognizing the Importance of Individuals with Parkinson's and Developing a Charter for Improved Care: For World Parkinson's Day, a charter is being developed with priorities including information at diagnosis, regular access to consultants and nurses, support groups, a specialist team, and ultimately, a cure. Individuals and groups are emphasizing the importance of regular reviews by healthcare professionals and information access.
There is a strong desire and need for improved care for individuals living with Parkinson's disease. This was emphasized during a challenge issued at the Parkinson's UK AGM by the charity's boss, Caroline Russell. The challenge called for recognition of the importance and agency of those affected by Parkinson's and encouraged them to seize the day and make their voices heard. For World Parkinson's Day on April 11th, a charter is being developed, and the group has come up with five priorities. These include the importance of information at diagnosis, regular access to consultants and Parkinson's nurses, support groups, a specialist multidisciplinary team, and ultimately, a cure. The group has received numerous messages from individuals and groups about what they believe should be included in the charter, with a strong emphasis on information and regular reviews by healthcare professionals.
Empowering People with Parkinson's to Advocate for Their Needs: Create a charter to prioritize quality of life for those with Parkinson's, emphasize the importance of a timely diagnosis within 18 weeks, and hold organizations and governments accountable for meeting these needs.
People living with Parkinson's disease deserve to live well, and while a cure is important, it's equally crucial to prioritize their quality of life and access to proper care. The creation of a charter, inspired by charities like Pancreatic Cancer, can empower individuals to advocate for their needs and hold organizations and governments accountable for meeting those needs. A key component of such a charter should be enforcing the NHS's promise of a definitive diagnosis within 18 weeks from referral. Many individuals have reported waiting much longer, leading to hidden privatization and frustration. By emphasizing the importance of this standard, we can work towards ensuring timely and effective care for those diagnosed with Parkinson's disease.
Advocating for more funding and resources for Parkinson's research and support: The US is leading a national plan to improve treatments, support, and eventually find a cure for Parkinson's, which involves unifying federal and non-federal entities and includes an advisory council to submit recommendations to Congress. The long-term benefits for patients, families, and society justify the initial investment.
Making noise and advocating for more funding and resources for Parkinson's research and support is crucial, despite the perceived burden of the disease on society. Unlike cancer, where people either recover or pass away, leaving less financial burden, Parkinson's patients and their caregivers continue to require significant support due to the progressive nature of the disease. The US is leading the way with a national plan to end Parkinson's, which involves unifying federal and non-federal entities to create a comprehensive plan to improve treatments, support, and eventually, find a cure. This plan is modeled after the successful Alzheimer's plan and includes an advisory council with various stakeholders to submit recommendations to Congress. While some argue that investing in Parkinson's research may seem costly, the long-term benefits for patients, their families, and society as a whole outweigh the initial investment.
Imbalance between health spending and research funding for Parkinson's disease: Patient advocacy drives change in research funding and access to care for Parkinson's disease, but it's crucial to address underutilized resources within healthcare systems.
There is a significant imbalance between the amount spent on caring for people with health conditions, such as Parkinson's disease, compared to the amount invested in research to find cures. Advocacy from patient communities plays a crucial role in bringing this issue to the attention of politicians and driving change. The creation of committees with the backing of government agencies, like the secretary of health and human services, can lead to substantial increases in research funding, as seen with Alzheimer's disease. However, it's essential to demand and advocate for the resources and care that are already available but not being fully utilized within healthcare systems, such as the NHS. By raising awareness and pushing for quicker diagnoses, access to specialists, and a "Parkinson's pass" for priority care, we can improve the lives of those affected while continuing the search for a cure.
Proposed Solution: Parkinson's Pass for Continuous Access to Benefits: A Parkinson's Pass could grant individuals with a confirmed diagnosis continuous access to benefits, saving resources, reducing burden, and improving mental health.
The process of yearly assessments for Parkinson's patients seeking disability benefits can be demoralizing and time-consuming. The inconsistency in expert opinions and the continual flow of new assessors make training a challenge. A proposed solution is the implementation of a Parkinson's Pass, which would grant individuals with a confirmed diagnosis continuous access to benefits without the need for regular reassessments. This pass could also include other perks like blue badges and free prescriptions. Such a system would not only reduce the burden on individuals but also save resources and improve mental health and well-being. It could serve as a model for handling other chronic conditions. Jeremy's suggestion, which received the most votes in the discussion, was that all citizens should have the right to access a specialist neurologist.
Five key choices for improving care and support for individuals with Parkinson's disease: The group proposed seeing a specialist for diagnosis, receiving proper information, securing government funding for research, access to a Parkinson's nurse, and a multidisciplinary team as key choices for improving care and support for individuals with Parkinson's disease. They also acknowledged the importance of advocacy and funding for research.
The group came up with five key choices for a charter to improve care and support for individuals with Parkinson's disease. These choices included seeing a specialist for diagnosis, receiving proper information, securing government funding for research, access to a Parkinson's nurse, and a tie between better training for all and multidisciplinary teams. The group discussed the potential addition of a Parkinson's ID card as part of a multidisciplinary team, which could include a Parkinson's nurse. The group also acknowledged the importance of advocacy and funding for research, with the example of Motor Neuron Disease receiving significant government funding. The group's fifth choice was not yet decided, but the potential addition of a Parkinson's ID card and multidisciplinary team seemed promising. Jeremy, who had previously advocated for a simple leaflet, had backed three of the charter's ideas and was open to the new suggestions. The group recognized the importance of addressing Parkinson's disease with energy and determination, given the symptom of apathy associated with the condition. The shockingly low amount of government funding for Parkinson's research, compared to the amount raised by charities, further emphasized the need for advocacy and action.
The Power of Individual Agency in Raising Awareness for Neurological Conditions: Individual agency and speaking up are crucial in raising awareness for neurological conditions like Parkinson's and MND. Passionate advocacy can lead to significant change, as seen with MND awareness and Rob Burrows' story.
While there is a significant investment in space research, there is a lack of funding and awareness for neurological conditions like Parkinson's and Motor Neuron Disease (MND). The discussion emphasized the importance of individual agency and making noise to bring attention to these conditions. Caroline, a participant in the conversation, suggested that just waving reports around politely hasn't led to results, and what's needed is someone like Jeremy, who is known for his anger and passion, to lead the charge. The turning point for MND awareness came when people like Rob Burrows and his friend Kevin spoke up about the condition. The podcast emphasized that while they can provide support and open doors, the individual's agency is crucial in making a difference. The podcast ended with a promise of an episode on the more embarrassing aspects of Parkinson's led by Paul. The show is sponsored by the judge's old chambers and private donors, produced by Nick Hilton for PODO, and their theme music is by Alex Stobbs. Please subscribe, rate, and review the podcast and share it on Twitter at @moversand6.
