Volunteering for Parkinson’s UK

John Telford, RSN DT member tells us about volunteering

  1. The RSN – Making a difference Nationally!

The Research Support Network exists to get people living with Parkinson’s engaged with research. For some years now Parkinson’s UK has recognised that the membership is a vital resource – and not just a passive one either. So a very fruitful collaboration has been developing with members and the charity’s Research Team.

For the RSN, one of the forms this takes is the RSN Development Team. This is a team of volunteers and staff who meet at the London office about 4 times a year but who also keep in touch by telephone or Skype/Lync conference calls when needed. This way a lot of work has been progressed.

RSN Development Team, John Telford, third from the right

Research Interest Groups

What sort of work? Well one of the strands is the development of RSN groups throughout the country. This is likely to become a self-reinforcing process; the more local and regional RSN groups there are, the more the power of the volunteer can be harnessed and channelled – more awareness-raising, more involvement and participation in research and more locally accessible research talks and events. There can also be more information-sharing through, for instance, the sharing of newsletters and person-to-person contact between groups.

There are now established and budding RSN groups in Yorks and Humberside, Newcastle, Cambridge and Cardiff as well as the East Midlands and Edinburgh. There is potential for Research Interest Groups of members and researchers wherever there is a research establishment. The Edinburgh and Yorks and Humberside groups now have newsletters like we do and we expect more to appear before too long. You can see what they are producing via their pages on the Parkinson’s UK site – go to http://www.parkinsons.org.uk/content/research-support-network and scroll down a bit.

2.  A new on-line presence: ParkyRSN

By the time you read this, the new members’ RSN web site, http://www.parkyrsn.org.uk/ will have been launched. It is a site specifically to support members of the RSN and has blogs, discussion forums and a lot of information. It is not run by National Office and is there for whatever you want to do with it. The more it is used the better it will be! It is administered by members of the RSN Development Team. We want it to be the place to go for all RSN and research matters. For instance, if you want to find out what research talks are taking place anywhere in the country you will be able to find them listed there. You can also raise any research topic you are interested in and engage with others in discussing it.

3. Participation and Involvement

You may have noticed more and better information coming to you about opportunities to participate in studies and clinical trials. You may also have noticed a few communications about being involved in the setting up and management of trials in which your role would be to represent the point of view of patients and people living with Parkinson’s. This is because it is now established that PwP’s should always be included in the team that designs and runs projects funded by Parkinson’s UK. This has now been piloted and so the long held aim of a one-stop-shop where volunteers can be put in touch with projects either as subjects or as members of the project management team is much closer to being achieved.

 4. Drug Repurposing

This is a two-prong approach that the RSN DT initiated. I hope you saw the items in The Parkinson and elsewhere asking whether you had ever experienced a drug that you took for another condition having a noticeable effect on your Parkinson’s symptoms. Those who said Yes were sent a questionnaire asking for further details – especially what drug it was. At the same time a set of volunteers spent some hours looking through all the posts in relevant parts of the Parkinson’s on-line Forum – thousands of them! – looking for any reference to drugs and other substances that people spontaneously reported had improved their symptoms (or made them worse). Did we discover a single magic bullet hidden there that could make life so much better for Parkies? I am afraid not. But we did find that some drugs that are taken for certain non-Parkinson’s conditions do have some already known beneficial effects on Parkinson’s symptoms and now we are about to investigate whether ‘best practice’ with these is widely enough publicised amongst clinicians.

The Parkinson’s Research Directorate is at the same time doing a lot of work, as is the Cure Parkinson’s Trust, to find candidate drugs used to treat other conditions which may also have a more profound therapeutic effect on Parkinson’s, slowing it down or reversing it, rather than merely improving symptoms as our study was aimed at.

So the RSN Development Team is actually achieving a few things. It is there to support you as RSN members. Do <write in>/<comment below> if there is something you think it should work on!

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