In the current climate anything that saves money for the government could be a vote winner. And just doesn't stop at Parkinson's. Many long-term diseases cost the government more in care and then research and cures.
I like both the idea and the strategy for a coalition of Charities engaging lawmakers and of focusing on improving both care and a cure. Within days of being elected in 2019, our local MP visited our monthly Drop In Cafe but sadly has not responded to subsequent approaches (busy bloke I guess). This is in contrast to his predecessor (Anna Soubry) who, after a rocky start, was actively engaged with Constituency events and badgered Ministers about issues we raised. As a retired Civil Servant, I must emphasise the need for Charities to present a united front if we want to be taken seriously by Departments. I was frankly dismayed when people felt the need to create a separate Charity for research into a cure. In my view this resulted in a diversion of giving from “Care” to “cure”, rather than additional donations from the public. And loss of charitable contributions for PDNS has resulted in these posts being absorbed into wider roles within a cash strapped NHS.
Keep on making this point Rory. We just got our proposal to introduce a game changing timely diagnostic test for PD to hospital labs rejected by a funding panel. We will keep going, but research needs funding and there just is not enough money.
Use SM and every influential powerful contact you have to get at power to make change happen. Set up online petition and get it viral. Get film maker to make drama about it. Doorstep Ministers and Civil Servants. Find onside journo / s ( mr paxman must have 1 mate left) ... all power and glory to your fight.
Well said Rory
In the current climate anything that saves money for the government could be a vote winner. And just doesn't stop at Parkinson's. Many long-term diseases cost the government more in care and then research and cures.
I like both the idea and the strategy for a coalition of Charities engaging lawmakers and of focusing on improving both care and a cure. Within days of being elected in 2019, our local MP visited our monthly Drop In Cafe but sadly has not responded to subsequent approaches (busy bloke I guess). This is in contrast to his predecessor (Anna Soubry) who, after a rocky start, was actively engaged with Constituency events and badgered Ministers about issues we raised. As a retired Civil Servant, I must emphasise the need for Charities to present a united front if we want to be taken seriously by Departments. I was frankly dismayed when people felt the need to create a separate Charity for research into a cure. In my view this resulted in a diversion of giving from “Care” to “cure”, rather than additional donations from the public. And loss of charitable contributions for PDNS has resulted in these posts being absorbed into wider roles within a cash strapped NHS.
Keep on making this point Rory. We just got our proposal to introduce a game changing timely diagnostic test for PD to hospital labs rejected by a funding panel. We will keep going, but research needs funding and there just is not enough money.
Use SM and every influential powerful contact you have to get at power to make change happen. Set up online petition and get it viral. Get film maker to make drama about it. Doorstep Ministers and Civil Servants. Find onside journo / s ( mr paxman must have 1 mate left) ... all power and glory to your fight.