tourism and rare disease- Parliament and PSP

Once I got over the horror of an early start, a flight, trains, and all the security, I got very excited. I was like a child in a toy shop. I was at Parliament, surrounded by history, politics, pomp and weirdness. It was fascinating; so much symbolism, so many statues, and all of it political.

The Central Lobby has four huge mosaic panels representing the saints of England, Wales, Scotland and Ireland. We entered from St Stephen’s Hall under St Patrick, so I noticed how long he’d been there. Since 1924. Recent, indeed. Significantly, this was after the war of Independence, the Treaty and the creation of the Northern Ireland state- this parliament no longer ‘ruled’ the day to day of most of Ireland when St Patrick went up. Symbolism wins.

Do even the English remember Mansfield or Seldon? Their statues are there alongside the Pitts, Fox, Burke and Henry Grattan- 180 years later, what parliamentary figures would be commemorated in this way?

Westminster Hall is a remarkable space; completed in 1099, it’s a medieval building in everyday use. Brass plaques in the floor mark events such as the lying in state of monarchs, or a speech from Mandela.

We weren’t allowed into the House of Lords. But the Irish accent isn’t the threat it once was, and Ditzy and I make a good white haired, big eyed, team. So the guard let us in to gawp at the splendour. Walls of 22 carat gold leaf, designed to make the wood panelling of the other house seem plain and common place, worthy of the lower classes.

Another chap, with velvet and gold plate ornament, gave us passes to the gallery, and we got to watch MPs doing their thing. Amongst the smarm and the awkward questions, there was a question about access to drugs for rare disease. I was so excited to understand what they were talking about. The biggest disappointment of the day was the notice for those accessing the gallery, who are

... not allowed to clap, or applaud, or to make any other kind of demonstration or disturbance.

I was unusually quiet and well behaved, despite bobbing up and down as much as some of the MPs, just so I could see who was there. I didn’t see Dave, but his side kick, Nick the Deputy Prime Minister was in action. Three of the 18 Northern Ireland MPs were there, but chose not to join us for our reception.

The sight seeing was a side event to the day. The reception ( wine, canapés, chatting, shoe laces) was the big deal. We were there to help raise awareness of Progressive Supranuclear Palsy, the rare neurological condition that took my mum, Dudley Moore, and many others.

Three quarters of people with PSP are misdiagnosed. There is no treatment and no cure. People lose their ability to balance, walk, talk, see, swallow, or communicate. Cognitive processing can be impaired. It is a slow disintegration. The event on Tuesday was to launch a tool to communicate some of that. Scott’s grandad had PSP, and Scott came up with the simple, genius idea of using a fraying lace to demonstrate that disintegration. That is Ed’s Lace, the reason for us all being gathered together.

I met PSP people I feel like I’ve known for years- the power of social media- and many others. There was a great community, almost family, feeling. Even without laces, we are bound together by shared experience. We know. And when Sheelagh spoke, she had us all in tears. We know. We embraced the recently diagnosed, but not newly ill. We know.

A small number of MPs attended, listened and learned. The knowledge will stay with them, hopefully influencing their behaviour. Awareness raising and relationship building are vital, but are only a start. We need our politicians to be taking action, to be creating solutions for the problems of supporting PSP and other rare disease patients,  to be questioning why NHS England doesn’t think it needs a rare disease implementation plan, to be making sure that effective drugs get to the people with rare diseases who need them.

Thanks to the fabulous Hannah Daykin for some of the pictures: watch her family’s video. Keith and Sheelagh’s video is here. These are all amazing people, properly awesome, and I was delighted to spend time with them on Tuesday. Also, I met Peter on Tuesday, and now this song makes me cry too.

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4 thoughts on “tourism and rare disease- Parliament and PSP”

  1. Fiona, it is ages since I have come along, though I have followed your adventures from afar. So glad you had a great time in Parliament, and trust you to charm them into letting you into the Lords on a closed day. Just loved this post: full of joy and drive and direction.

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