AN ACCOUNT OF THE APPG GROUP FOR PARKINSON’S DINNER AT THE HOUSE OF LORDS ON 13 DECEMBER 2011
In early November this year I was surprised and very pleased to receive an invitation from Parkinson's UK to a dinner at the House of Lords. The dinner was hosted by the all party Parliamentary group for Parkinson's and was concerned particularly with research into Parkinson's. I'm not sure why I was invited but I was very pleased to accept. It was agreed that I should take Val Hamblin, the chair of the local Parkinson's group as my support person.
Drew Lindon, the Parkinson's UK Parliamentary Officer, made all the practical arrangements including hotel accommodation. Val and I travelled to London on 13 December, settled into our hotel and presented ourselves in the hotel lobby, as directed, to pick up the taxis which were taking us to the House of Lords. We were dropped on the pavement just outside the security barriers and had to walk through part of the grounds of the House of Lords. On entering the building we went through airport-style security and were issued with passes.
We followed directions to the Atlee room and after drinks moved into the dining room where we all had allocated seats. I believe there were 42 people sitting down to dinner. There were six or seven tables each with a mixture of volunteers, researchers, parliamentarians, medics and staff from Parkinson’s UK.. At my table there were 4 volunteers – 2 with Parkinson’s, 1 carer and 1 branch support person,- 2 members of the House of Lords – one with a distinguished medical background, the other renowned for her work for people with disabilities and with a family connection with Parkinson’s- an MP whose Father had Parkinson’s and another neurologist who is a specialist in deep brain stimulation but is also involved with research into a particular drug on behalf of the Cure Parkinson’s Trust.
Our hostess was Baroness Gale, a Labour life peer from Wales whose father had Parkinson's disease. She welcomed us all and said that she would like to have the speeches interspersed with the meal. The first speech was a personal account by Liz Wolstenholme of her experience of Parkinson's. Liz is the chair of the trustees of Parkinson's UK and spoke very movingly about how the condition has affected every aspect of her life since she was diagnosed in 1994. She mentioned the large number of professional people that she saw and the bureaucracy that affected the ways in which these people could help.
The speaker after our first course was Prof David Byrne from the Institute for ageing and health. He is based in Newcastle University. He spoke of the difficulties researchers experience in getting clearance of their research and in negotiating all the red tape that surrounds research. There are particularly stringent regulations when any patients are recruited for trials by researchers. This can cause significant delays in any progress. There were further speeches by Kieran Breen from Parkinson's UK, the senior neurologist sitting at my table and from Lady Gale. After each speaker there was an opportunity for questions or comments. There was a good response from the floor and a very friendly atmosphere.
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We had been given a briefing paper before the event which highlighted issues surrounding research. In particular the paper emphasised the need for cooperation between the various regulatory bodies, and the need to encourage a culture of research in Britain. There would be significant benefits if Primary Care groups encouraged their patients to participate in trials and if the newly established Health Research Authority would cooperate with Parkinson’s and other charities in establishing guidelines for this.
There was mention of the value of the brain bank, of the important work done by DeNDRon (Dementias and Neurodegenerative Diseases Research Network) and of the tension which surrounds the sharing of NHS patient data with other organisations. I spoke to someone involved in research into a drug currently being used in diabetes but of possible use to people with Parkinson’s. This research has been commissioned by the Cure Parkinson's Trust. Because the drug in question is currently being used for diabetics it would not be necessary to arrange and wait for lengthy safety trials before using it for people with Parkinson's.
Over coffee some of the parliamentarians drifted away as the House was still sitting and some of the other guests moved around. I had an opportunity to talk to a number of different people all of whom had a concern and a connection with Parkinson's
My understanding is that the evening was planned with the intention of communicating to the parliamentarians the importance of both speed and clarity when drafting regulations embodied in the new bill. Parkinson's UK was not asking for more money but was pointing out the difficulties which currently inhibit research and asking for these to be addressed. From my perspective it appeared that all the points had been given an airing and that there had been a good response. There was a very broad spectrum of people attending and it is to be hoped that they all took away with them the understanding that research is not just about the science but that the processes and bureaucracy involved have a significant impact and therefore affect the quality of life of people with Parkinson's.
I thoroughly enjoyed the evening and feel privileged to have been included. I felt the tone of the event was just right. It was friendly and inclusive but very clearly planned to influence both politicians and researchers in order to achieve the best possible results from the research as quickly as is safely possible. Personally, my ‘quality of life’ was improved by the experience and I am confident that on a more general level the event will have stimulated discussion and co-operation between individuals who might not otherwise have met. This might generate outcomes which may be beneficial for many people affected by the condition.
Caroline Maxwell
19 Dec 2011.