Here at the SoPD we are politically neutral.
That said, I will report on events that directly impact the world of Parkinson’s disease research (without adding too much in the way of personal opinions).
Recent legislation introduced in the US congress could have major implications for subsets of the Parkinson’s disease community, as well as a host of additional medical conditions. The legislation is seeking to remove the orphan drug tax credit.
In today’s post, we will have a look at what the orphan drug tax credit is, and why its removal could be damaging for Parkinson’s.
The United States Capitol. Source: SpotHeroBlog
On November 2, House Republican lawmakers introduced a bill to reform the U.S. tax code. The complicated tax system probably needs a serious clean up, but the legislation will also terminate something called the orphan drug tax credit.
What is the orphan drug tax credit?
Today’s post is something a bit different from our usual fodder.
Here at SoPD HQ, we like to throw our support behind worthy projects. And we were recently contacted by Eirwen Malin regarding an idea that we were genuinely passionate about: Improving patient education
Eirwen is being supported by the Winston Churchill Memorial Trust and in the second half of the year she will travel to the USA and then later to Argentina to find new ideas for Patient Education.
In today’s post, we are handing over the keys to the car to Eirwen and we will let her explain the project that she is about to undertake. The goal of this post is to get feedback, ideas and thoughts about the plans for her project. We also encourage all our readers to follow Eirwen (contact details at the bottom of the post) as she undertakes this exciting endeavour.
Hello, this is me – Eirwen Malin. I’m not prepared to own up to quite how many years I worked in the Third sector in Wales but take it from me (and my photo) quite a lot. I worked mostly trying to influence policy and practice, advocating on behalf of a range of different groups and issues, researching, running demonstration projects, that type of thing. Trying to get the issues heard above the clamour and competing for funding which would hopefully make a difference.
In 2014 I was diagnosed with Parkinson’s and life changed a lot.
It took me a while to realise it but apart from threatening my physical voice, (it’s suggested that 75-90% of people with Parkinson’s have some sort of voice, speech or communication difficulties, see here for more information) having Parkinson’s gave me a new and more powerful voice. I could now speak with the authority of “lived experience”, which might help me make a difference for me and my fellow Parkies.
My own experience of diagnosis was not good. I’d been referred to a neurologist to “put my mind at rest”, so it was completely unexpected. I was not diagnosed by a PD specialist and had to be referred on to a clinic, I was told what I needed was information and then sent off to wait for an appointment with no phone number, website address, fact sheet, nothing!
While I waited, for nearly 6 months, I found masses of information, some of it well expressed and clear, some incomprehensible, some coming from authoritative sources, some from people who were living with the condition, some contradictory, some pseudo-scientific, some completely off the wall yet plausible, in short a potential minefield! Now I am a reasonably competent person, who quite enjoys and is able to read and make sense of research papers, understand the statistics, weigh up the arguments and generally make sense of what’s available. However lots of people with Parkinson’s will not be like me.
So, now I thought maybe I could use my new voice to shout out for the need for Patient Education.
I signed up as a volunteer facilitator for Parkinson’s UK’s Self-Management Programme.
It’s an excellent course, based on work long championed by Dr Kate Lorig at Stanford:
I have seen it help people to gain confidence and regain a measure of control over their lives. I would thoroughly recommend it, however, 6 half day sessions can’t provide the on-going information about medical, social and lifestyle adjustments that are required to live as well as possible with Parkinson’s. Sometimes one needs almost daily updates to manage the complex and peskily changing symptoms. After all the patient is the only one who is there 24/7/365! They must know where to find information and importantly what questions to ask. I meet far too many people desperately seeking guidance.
The opportunity arose to apply for a Winston Churchill Travel Fellowship, as the strapline says the idea is “Travel to learn – return to inspire”.
Established in 1965, following the death of Sir Winston Churchill, the Winston Churchill Memorial Trust hands out 150 fellowships each year providing a unique opportunity for UK citizens to travel overseas with the goal of bringing back fresh ideas and new solutions to today’s issues, for the benefit of others in the UK.
At the end of a quite lengthy application process which has whittled over 1000 application down to about 150 Fellowships I feel very honoured, “Yippee”, to have been successful in the Medical Practice and Education category alongside a CEO of an NHS Trust, Doctors, Nurses, Researchers etc, Yikes!
My quest is to find new ideas for Patient Education. I am focussing particularly in the field of degenerative neurological conditions. This area is particularly tricky because I think it’s reasonable to say that even the experts still have much to learn and the multi-faceted nature of the conditions and their symptoms result in the need for a team of medical practitioners to support the patient making it even more difficult to provide consistent information. The patient has to know whats going on.
For my fellowship, I will be travelling to USA and Argentina.
Yippee, exciting trips, but once again Yikes, the journeys are long, I’ll get even stiffer, and I don’t do well in crowds or queues. It’s a good job that my partner can come and help with the stressful bits.
I’ve tried to cover as many perspectives as I can think of but I’d welcome ideas from readers. I’ll try to fit them in.
A bit more detail on the US trip July-August 2017.
A meeting with the Michael J Fox Foundation. I found lots of information on their website, it seems like a good place to start.
I’m hoping to visit New York University’s Electronic Media Patient Education Initiative but still waiting for confirmation
I’m excited to be going to visit Dance for PD in Brooklyn. They do some fantastic work getting people moving and I’m sure there is much to learn.
I’ll be talking with the charismatic David Leventhal and other staff to ask how they see their educational role. Most important I want to get feedback from their participants. I have developed a one-woman storytelling performance Sorting the Sock Drawer which I will use to stimulate discussion.
San Francisco area
I’m going to see Dr Kate Lorig (mentioned above) and hoping to talk to some people who will be at Stanford on a one-week course.
University of California San Francisco Parkinson’s Disease Clinic and Research Centre. Really clearly written information on their website that I wish I had found earlier.
By the way I’ll be packing my cheesecloth tunic and flares – it’s the 50th anniversary of the “Summer of Love” with apologies to younger readers who don’t remember!
I will meet Professor Cynthia McRae, a behavioural psychologist who focusses on the impact of non-medical symptoms such as quality of life, depression, loneliness, and other psychological factors that are often associated with Parkinson’s disease, but are not always included within medical research.
Professor Cynthia McRae
She said “If there is such a thing as a good place to have Parkinson’s then Denver is it!” and introduced me to the Parkinson’s Association of the Rockies. They have so much going on I shall spend some time with them. Once again I’ll be using my performance to stimulate a discussion.
A flying visit to spend a day with the Parkinson’s Voice Project, their mantra about people with Parkinson’s living “with intent” really speaks to me.
Pittsburgh and around
University of Pittsburgh Institute for Neurodegenerative Diseases to be confirmed
I will visit the Wheeling Hospital Parkinson’s Education Centre. Also at Wheeling I will be filling a gap in the schedule to speak with general medical practitioners to ask about issues for them in helping patients with neurodegenerative conditions
Finally Health Plan, in St Clairesville Ohio. Health Plan is a not-for profit health insurance provider that calls itself a health maintenance organisation. It will be interesting to get a business perspective on Patient Education.
Alongside the formal meetings I hope to just talk to people I meet, tell them what I am doing and get their views. In the end that might be as important as the planned programme.
Planning for Argentina in Oct-Nov still to be finalised.
So once again Yippee it’s going to be fascinating and exciting but Yikes I really do hope I can come home with the goods and help influence the provision of a better system of educating patients than I encountered. I feel the sense of responsibility to the Winston Churchill Memorial Trust who have invested faith and funds in my idea and my ability to deliver and even more so to my fellow Parkies diagnosed or not for whom I’d like to make a difference.
I’ll be posting activities, photos, videos of the formal meetings and the more touristy parts of the trips on facebook https://www.facebook.com/EirwenWCTF you can follow my activities, send me messages there os send messages via e-mail firstname.lastname@example.org