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.

in which I have no principles

The English Houses of Parliament are fascinating historical institutions.

houses of parliament

I’m inclined to rant and rave about how they actually work, although opinions on the upper house have been overtaken by the horror of Dave and his mates. A general election looms, so be warned, bloggy buddies. Outrage may drag my brain from the foggy depths to complain  comment here in an articulate fashion.

The Conservative party did not win the last election. They have had no mandate for  demonising the sick as ‘scroungers’ or privatising parts of the National Health Service. They have simply ignored all protest, while lying, cheating and manipulating their way to bigger bank accounts. Perhaps it was always thus. Those in power look after themselves.

The House of Lords is where those with hereditary privilege or granted ‘honour’ review legislation and hold the works of the lower house to account. Or something.

As a white, educated, European I recognise my own privilege in the world, but that of the ruling class is of a different character altogether. Champagne, anyone?

Woolly jumper, lefty, pinko, naïve ?? All of those things. Also, curious.

Oh yes, I’m off to parliament on Tuesday.

How could I resist? I know folk who have turned down invitations to royal events because they do not support the status quo. I am less principled, or simply more nosey. I’m not going to be invited to a garden party, or get an honour. I’m taking my chance to look round me when I get it.

Wordpress doesn't like this pic the right way round
WordPress doesn’t like this pic the right way round

 

The PSP Association are having an awareness raising reception in parliament, and Ditzy and I are going on a day trip. There will be many emotions: “Look what you made me do, Ma”, “Pops, how did I end up here- are you watching”,  “Can I lie down yet?”,  “This is where they have their tea?”, and much exhaustion.

I’m so excited, I just can’t hide it. (Ditzy and I may be wearing these outfits.)

on not following instructions

“When all else fails, read the instructions.” The old man used to view instructions as a last resort, each set a challenge for him to best.

Sometimes I’m good at receiving instruction; often I too will think I have a better way of doing things. Why would you not do it the easy way? Or the obvious way?

Then there are the things I’ve been doing the wrong way for so long that I’ve forgotten there is a right way.

Today I was reminded that there is a right way to wash bras.

A clue for the uninitiated- it’s not in the machine.

The hassle and the expense pain me.

A new undergarment, ripped to shreds on first contact with the washing machine. I can’t even bring it back to the shop.

Bad words.

40 shades of spring

We had our first overnight in the caravan at the weekend. We cleaned and sorted and tried to remember what lived where, ah sure it’ll do rightly where it is now. There was exploring in the forest, investigating on the beaches and wondering if  we needed a fancy new TV. (Sadly, no.) It was wonderful to be there, away from the city and the everyday. We are remote- no handy pub, or walkable to shop. No internet. Although we are on a caravan site, it feels like there are just the five of us, the odd sheep and some rabbits. It is calming just to look out at fields and bog. Down the hill, in any direction, we find beaches. I love me a beach.

Across the country, battered crocuses are giving way to triumphant daffodils. We have made it through another winter. Technically it may have been spring for 6 weeks, but it never feels like the season has turned properly until the middle of March. The greening, the brighter evenings, and the fresher air all lift our spirits and give us reason to celebrate.

This afternoon I’m off to join the girls as they dance in the parish hall, as part of the celebrations of the green, St Patrick and all things Irish. There will be stew and ballad singing, face paint and chaos. I enjoy the thought of it, but the reality will drive me mad. A crowded hall and hundreds of excited children- what’s to like?

I’m wearing a little green. My foot will tap to the music. I’ll be delighted to see people and I’ll chat and laugh. My girls will do their thing and I’ll beam. I’m celebrating the green, the good drying weather, and the community.

A special St Patrick’s singalong treat…

And because I can’t resist, again…

Beannachtaí na féile Pádraig oraibh
(St. Patrick’s Day blessing upon you- copied from HH, any mistakes are hers ;) )