Dear all

I have been meaning to post for some time about The World Parkinson Congress, but having just read much of Paula’s thread about “finding all accelerators” I feel compelled to air my own views on some of the issues raised.

Of course MJFF are trying to help us patients. In most people’s minds, MJFF provides the biggest and brightest hope for the future. I think this is why people get so passionate and emotional about the organisation – it’s because we feel so emotionally attached to it. It is a relationship which can be likened to one with your close family. It is the ones closest to you that bring you the most joy and the most pain as well. Profound stuff!

I think that all the passion displayed in Paula’s thread is constructive except where it becomes personal. However, somewhat like the fact that we need to convert science into tangible treatments for Parkinson’s, the key is to convert some of this passion into a tangible resource.

As we know, PwPs and advocates can be a significant resource in Parkinson’s – it does not have to be all talk. We can provide funding, media profile, a data set, political pressure and we can increase understanding of the condition. We can take part in clinical trials. We can communicate our needs to the industry. We can lobby regulators. We can stimulate an informed debate on methods of best practice and we can provide significant insight into the vagaries of symptoms from hour to hour and day to day and differences in the symptoms from person to person etc etc..…I could go on, but these are all ways that PwPs can make a difference.

I think there are two outputs which come from the PwP resource:

1. Making the difference itself – in accelerating the progress of medical science, patience is not a virtue, but patients most certainly are.
2. And I think this is the one that most people just don’t get – when you’ve had Parkinson’s for a few years it is very difficult to retain a sense of worth. Everything that you were once good at falls by the wayside. It is therefore, only natural that you should turn to engage in the very thing that is throttling you – your PD. PD represents an area in your life in which you can retain a sense of purpose. It is somewhere you can go to recapture fulfilment in your life; by doing something positive; something to be proud of.

Once you have found a means of establishing this new form of usefulness, it is like a drug and you want more of it. There is nothing wrong in this, it is a constructive emotion. The problem comes when the doors appear closed to PwPs contributing to progress in whatever guise that may be.

I also think that there is often confusion on the matters with which PwPs can and should be involved. Most of us are not scientists and therefore, it is ridiculous for us to engage in purely scientific debate. Nevertheless, once that scientific debate is over, the results of it should be communicated in a straightforward manner to those who may eventually be affected by it. In other words, PwPs need to be involved in the scientific agenda NOT necessarily the science itself.

Greg Wasson and I (and others) have been putting forward this kind of case to the organisers of the WPC. We are representing the patient perspective (or rather the impatient perspective!).

I have to say that for once I am really excited about the way Eli Pollard and much of the WPC hierarchy have taken our comments on board.

For those of you that don’t know, the WPC is taking place in Glasgow, Scotland from 28th September – 2nd October 2010. I am hoping that this forum will be a huge opportunity for the patient community to be recognised as a constituent element of the resource required to cure Parkinson’s.

So here are some of the things we have been working on to try to achieve this at WPC 2010:

1. Fundamentals of PD offered on Day 1 as a snapshot of what’s going on in PD today and to entice people to look forward to delving into the meatier parts of the meeting once it starts
2. Living with PD Posters (as opposed to Scientific Posters) open to people working on projects that engage PwP’s and their companions to take charge of their PD and to share the programs and projects (local, regional, national, and international if it’s via the Internet) with other delegates. These posters will be produced into a take away book or something downloadable from the WPC website and will help spread ideas to inform and inspire others.
3. Early morning sessions set aside for a variety of specific groups including patients, These early morning sessions will be a time for the PwP community to come together constructively during the meeting to discuss seminal issues and prepare for the day. These will take place BEFORE the opening plenary each day.
4. Program will offer a number of sessions that will have a PwP give an introduction, for example in certain basic science and clinical science sessions, a PwP will introduce the topic and why it’s important to patients and where the scientific community should focus their discussion in order to respond to this.
5. Pending support and sign-off from the government members needed to make this work, there are tentative plans to help facilitate a pre-Congress session in collaboration with the Scottish Parliament to look at Long Term Conditions (LTC) and the role governments around the world are playing in planning for issues of delivering effective and reliable health care for people living with a LTC. There will also more than likely be a further session on how the PD Community can work together in pursuit of a cure.
6. A session on PD Advocacy. What people are doing, where, why and how they are making a difference.
7. A session looking at why the UK and European Pharma to Patient communication is so restricted and an informed debate on the pros and cons of this.
8. Despite the above we will be having a forum where PwP’s can ask questions about medicines and Pharma in general from a panel of experts.
9. We also propose to have a number of outputs for patients from sessions so that the Congress is not just a Congress but something that lives on afterwards and develops ideas and relationships for the PD community as a whole but especially PwP’s
10. And finally we hope to make a big media splash by engaging PwP’s in an event of some kind so as to ensure we raise understanding and awareness of the condition. The economic burden of PD is set to rise dramatically and we should use this to lobby for investment NOW

I am sure I have forgotten some of this, but that’s it for starters!


There is still time to influence the WPC schedule, so please, if anyone has any ideas, please log them under this thread. I am afraid I cannot promise I will respond to any of these, but I do pledge to read them all.

Hope this information is of some use.

Tom wonderful to hear from you and the update. I guess it's time to start paying closer attention to the WPC.

I have just been procrastinating but wanted to have a good SPIT conversation with you so don't miss, get in touch...lol

i see we still think identically. I very much appreiciate your efforts Tom. Drop your thoughts anytime.

paula

I have amended point "10" of my initial post so that it is no longer complete gibberish!

Thanks Paula for your reply. Glad that we continue to be totally aligned.

Hi,
It is a great agenda for the meeting. I just have a few suggestions
How many PWP would be attending this meeting?
If its a small number, a couple of morning sessions of "breakfast with a speaker" would be nice. 15-30 min of time, one or two speakers with 4-5 PWPs.

I suggest : Patient posters spread out all three days of the meeting.
One or more booths where PWP are available if anyone is interested in chatting.
and to share any information we have,
May be a registry of patients willing to participate in clinical trials???????

girija

We are hoping for a few thousand patients, but we still hope to have early morning sessions.

Yes - posters will be there for 3 days at least.

There is going to be a Renewal Room like last time with Patient Advocates on duty to hand out practical and experience-based advise to others. This will be the place for PWP's to meet to chat.

As for the registry - a matter close to my heart - it's a good idea to enlist people at this event. We (The Cure Parkinson's Trust) have recently applied for a $1mill grant to set up a database which will cover this and many other uses of PwP data.

Tom

Tom,

This sounds wonderful. Thanks to you & Greg (and others) for working so hard and putting forward the patient perspective. I love the ideas you're working on for the WPC.

Jean B

being very emotional this morning, Tommy, your post makes me cry...The potential for progress seems achieveable now. My husband and I plan to attend the WPC in scotland in 2010. I am already searching for air fares.I did attend the WPC in Washington; cannot remember the year now, madelyn