APPG Research Dinner


#1
I recently attended a dinner at the House of Lords, hosted by Baroness Gale, Chair of the All Party Parliamentary Group for Parkinson's. Guests included members of that group, together with Parkinson's UK staff, members of the charity who have an interest in research and leading research professionals. The evening was very emotional, interesting and illuminating, a passion for finding a cure was evident.

I gleaned from the evening that one major issue is the length of time it can take to get from getting funding to receiving approval for any research project from the various bodies and that there is an urgent need to simplify the system.

Conversation also centred on the need for the new Health Bill to have built into it an enviroment that encourages research, which make perfect sense.

Much of the discussion regarding research was around drugs, medication and the pharmaceutical industry, but I wondered whether research was being done into non-intervention treatments, which I was reassured of, an example of such research is the Wii and the benefits of exercise, for which there is a project currently being done.

The news that the Government will be setting up a safe and secure system where researchers will be able to access valuable patient data, their treatment and journey through the system was welcomed, but I wonder just how easy this will be?

One other topic was the Brain Bank - of which I learned there is more than one. Would it not make sense to have one central brain bank? Would it be feasible to have an 'opt out' system for the donation of brains?

I have just touched on some of the discussions and conversations and although it was not a long evening it was extremely intense and I came out tired but hopeful and to some degree reassured that we are going in the right direction and that Parkinson's UK staff are focussed and working hard to improve our situation with the aim of 'Finding a Cure'

#2
Hi JennyM,

Thank you so very much for reporting to us what happened at this dinner.
I so wished the process would be simplified and much speedier than it is!

Natasha

#3
Last night I had a most enjoyable evening at a dinner held in the House of Lords to talk about Parkinson’s and research. Hosted by Baroness Gale there was a mixed audience of parliamentarians, researchers, clinicians and most importantly people with Parkinson’s and their partners. There were three short speeches interspersed with an excellent meal. David Burn and Kieran Breen talked about clinical research and the Parkinson’s UK research strategy. I talked about what it is like for me having Parkinson’s and how I have been involved as a patient in research in different ways. There were lots of questions to all of the speakers. We pressed home the importance of taking a lead in exploiting David Cameron’s announcements on research and the use of NHS data. We also pleaded for a speeding up of the approval process for clinical trials and getting new drugs to market.
It was I thought a very successful evening that brought onto the national stage people with Parkinson’s newly involved through the research support network. I’m sure we will see more of them in the future advocating for research pushing us towards a life free of the symptoms of Parkinson’s.

Posted on behalf of Liz Wolstenholme - Chair of the Board of Trustees, Parkinson's UK

#4
thankyou so much for that update,im glad u had a lovley time at the dinner,and learned so much ur self.when i wnet to puk conference,i was able to speak out about my pd and how it effects me,and i think this is a great opputuinty to be able to do that.we had resurchers speakin there also,and agin so intestin ,all of it.so agin thankyou for sharin ur expernce with us about ur evenin to x:smile:

#5
Yes, I too was lucky enough to go to that dinner. It was an excellent evening and, as a lay person with Parkinson's I felt the 'tone' was just right. It was formal but friendly and not at all intimidating. There were scientific references but nothing that could not be understood by non-scientists. In fact the speakers focussed more on the processes and bureaucracy which surround and can inhibit or delay research. There was an emphasis on co-operation between researchers, statutory and voluntary bodies leading to improvements for people with Parkinson's. I sat next to a neurologist who is currently undertaking research into a new drug treatment for the Cure Parkinson's Trust as well as being a specialist in deep brain stimulation. Fascinating. Thank you Parkinson's UK for giving me the opportunity.

#6
My husband and I also had the priviledged to attend this rather
grand event organised by Parkinsons UK Parliamentary Lobby Team at the
House of Lords last Tuesday evening. The event was aimed at raising
awareness within Parliament of the challenges the charity face in
overcoming bureaucratic and funding hurdles to research and other health
related obstacles to best practice for PWP.

As we all know there are many changes currently taking place within the
NIHR, MRC, HRA and NHS systems and it is imperrative that Parkinsons UK
strive to make their voice heard when it comes to the content of the
Health and Social Care bill which is currently being debated in
Parliament.

We listened to some very stimulating speakers. Liz Wolfenholm, a
Trustee of Parkinsons UK, kicked the whole thing off with her personal
story of Parkinsons diagnosis and treatment path, which resonated very
strongly with most of those present who live with PD, we saw many
parallels.

Prof David Burn was very upbeat about the future of research into
Parkinsons. Whilst recognising there are many bureacratic obstacles to
effective research in this country he remained confident that the
message was getting through and he was hopeful that changes to the
current regulatory processes were possible with continued lobbying and
pressure from the research community and charities. As is the case with
PD one size doesn't fit all and such robust regulatory processes are not
always appropriate to all research trials where the potential to cause
no harm is evident. One such example was given by Liz who had recently
heard on the radio about a piece of research that suggested blue tinted
glasses could help visual disturbances experienced by some PWP - she is
currently conducting her own personal research into this, by trying a
blue filter paper, but would like it to be possible for researchers to
persue this innocuous phenonenom further to prove or disprove the
theory. However, the regulatory processes involved make it unlikely
this will ever happen.

Kieran Breen, Director of Research for Parkinsons UK is always easy to
listen to with his soft Irish accent and gave us many facts and figures
about current research projects being funded by the charity together
with an overview of the research strategy for the next five years and
the impact the charity aim to make on ensuring that every penny spent on
research is value for money.

Much was said about involving patients in the research process and the
last few years has seen some progress in this direction. However, I
still believe there is a fair way to go to establish a good model for
patient involvement in trial design and research strategy, I am hopeful
that the passion and energy expressed during the evening will be
sufficient to make it happen. I can always be called upon to talk about
Parkinsons and research for hours so was more than pleased to be given
an oppportunity to add my voice to those of others present to raise
awareness of the issues PWP face on a day to day basis.

The only slight disappointment to the evening was that about six people didn't turn up so there were gaps on each table which made conversation a bit disjointed if you were sat next to an empty chair. Mitigating circumstances were that the Health Bill was being discussed elsewhere in Westminster whilst we dined so perhaps their interest lay there. Those MP's that did attend asked some probing
questions of the speakers and we can only hope they will represent our
concerns when they get the opportunity.

#7
Thanks for all your accounts of the evening - it is really good to hear your perspectives on the event. After the evening, we have been following up with the MPs and Lords who attended. It has definitely helped raised awareness on research, as well as on Parkinson's more generally. A number of the peers and MPs have since tabled parliamentary questions for us, and are supporting our calls for a neurology tsar amongst others (see http://www.parkinsons.org.uk/about_us/news/news_items/all_news/neurology_time_bomb_warning.aspx). Watch this space!

Drew, Parliamentary Officer