Monday, 28 November 2011

The European Parkinson's Disease Standards of Care Consensus Statement

After months of careful planning and a great deal of hard work, the European Parkinson's Disease Standards of Care Consensus Statement was launched last Tuesday 22nd November 2011 at the European Parliament in Brussels. The day itself was delivered with military-like precision, under the watchful stewardship of the General Secretary of the EPDA Lizzie Graham. I believe that it is fair to state that without such careful planning the day would not have been so successful.

Even though the EPDA itself has been in existence for quite a few years now, I believe it was their very first foray in to the European political arena, so on the morning of the event itself everyone was on tenter-hooks with the ever present worry that not enough MEP's and Commissioners would attend to make the event a success. However, as the time drew near all the places at the tables were soon taken up and the presentations started, with John Bowis, a former MEP and EPDA patron, moderating. The event itself was hosted by MEP's Linda McAvan and Frieda Brepoels, together with two high-profile European Commission officials in public health and health innovation policy, Maria Iglesia-Gomez and Paul Timmers. 

For me personally, the message really hit home with the patient testimony of Branko Smid from Slovenia, when he made an appearance at the start without the aid of the continuous feed of levodopa in to his stomach - basically his lifeline which enables him to walk, talk and engage with the outside world. By doing so, he had demonstrated in the most shocking way possible the effects of Parkinson's in its rawest form without the control of drugs. In a very short space of time, Branko had become withdrawn, depressed and unable to control his body, in spite of the reassurances of his wife Tatijana. As Branko had lost the ability to talk, a prepared speech was read out on his behalf by Chui Mann from the EPDA. To do what Branko did requires a great deal of courage and trust, it is not something which I could ever contemplate, and he has earned my deepest respect.

Also taking part in the discussions were Professor Bastiaan Bloem from the Radboud University Nijmegan Medical Centre in the Netherlands, who discussed the treatment of Parkinson's Disease, which was followed by a short patient testimony from myself on the consequences of the treatment of Parkinson's on my career in Banking, and the impact the illness has had on family life.

The Consensus Statement draws attention to the economic and social costs of the impact of Parkinson's where the population is not only growing, but also living longer. Its aim is to set in motion what the European Policymakers need to do to deliver a standardisation of care across Europe for People living with Parkinson's and has been launched to coincide with the 2012 European Year for Active Ageing. It is for anyone who is involved in the world of Parkinson's, be they healthcare professionals, research organisations, drug companies, PwP's, family members and friends, as well as patient organisation's. Together with further information regarding the launch, the Consensus Statement can be downloaded at:

You can also find reference to it on Twitter from Paul Timmers (Director, ICT addressing Societal Challenges) at:

EIP twitter account @EIP_AHA

No comments:

Post a Comment