There’s been a bit of a hullabaloo in the UK media this week about how lobbying companies may influence political discourse. Prompted by a question on Twitter, I was reminded of my limited, yet varied, experience of attempting to influence politicians directly.
I’d become aware that there was going to be an event to mark Rare Disease Day at the home of our political Assembly, Stormont. I emailed all of my local representatives and all of Herself’s. I wrote about her condition, that rare diseases don’t mean rare care needs, and how I hoped they’d all come along to chat, and to learn. Within the hour, one of the politicans had phoned me (I hadn’t provided my number) to talk about the event, his personal interest in the issue, and ways of targetting the politicians on the Health Committee. Wow. Someone was interested in the issues his constituents raised. Someone was prepared to work for me. I was hugely impressed. He was new to the assembly then; he’s now a force to be reckoned with, still working for the real people. (I’m not deluded; I know he’s only a politician and so will disappoint me sometime.)
The following year there was a similar event. While I was primarily there to represent families and patients with PSP, I took some time to accompany a friend to speak to a senior politician about the needs of those with ME/CFS. L is very knowledgable and experienced in all aspects of ME/CFS care, or lack of it. I nodded and put in my tuppence worth to support her informed and reasoned arguements. The tall man looked down at us, metaphorically patted us on our heads, and asked us to send somebody “professional and articulate” to talk to him, as there was no point in talking to “amateurs”. He suggested a lobbyist we could use.
Guess which of these two has the most influence in health issues in Northern Ireland?
Colleagues spoke to him recently, and he wasn’t dismissive or rude in any way. Rumour has it that he listened. He must be being groomed for higher office.