strike a pose

-Will you talk about the work you did?

-I will.

-Would you be available to chat to any journalists that turn up?

-Surely.

None turned up.

neuro

6 weeks later…

-Are you still ok to talk to a journalist?

-Yes, of course.

-She’s from the regional Sunday tabloid.

-Oh, um, well, ok. That’s grand.

 

panic, panic, panic

 

The interview happened by phone last week. I was in pjs, despite having hardly slept with anxiety. I’d written pages of notes of what I wanted to say (what good things can happen when the system listens to patients and works with us). The journalist knew what sort of a story she wanted (ill woman with young family and her tragic, doomed, mother). We proceeded to the dance.

The article will appear eventually. The nonsense is over. The journalist and editor will do what they need to do to sell their paper. My input is over and all I can do is wait for it all to appear, and vanish.

 

It turns out there is always more.

The photograph they had wasn’t ‘good enough’ (we may have different criteria for that). A photographer is on the way. The house is tidy. I am dressed. My face has been drawn on. I’m hunting out the extra anti mad tablets.

How did I end up here? I’m so much more comfy being anonymous in pjs.

 

 

 

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.

changing the story

As is the way of these things, my little people are getting bigger. Early each year I’m puzzled by changed age groups in sports and dancing. How can Girl1 be ‘Under14′ and Girl2 be ‘Under13’?

Under14 dancing has different requirements- and I don’t just mean the jig set dance (nope, me neither). I mean the make up. Girl1 went dancing on Saturday before a competition, except there was no dancing. There was a beauty parlour in the back room, with Girl1 and her mate as the subjects. The bigger girls wheeled out make up bags and curling tongs and set to work. Great fun was had, with the dance teacher occasionally popping her head round the door and demanding more blusher. The girls looked great, wondered if their eyebrows had been coloured in because they felt weird, and danced just as well as they normally do.

Have you spotted the problem yet? This level of attention to appearance is now a requirement. I’m going to have to help do it. Me, in charge of somebody else’s make up and fancy hair do. A whole new story opens up.

irish dancer

Our stories change over time. I used to talk about education and employment for ex prisoners, then I could do nothing, not even talk about doing nothing apart from lying on the sofa. ME took much from me.

Eventually I started to tell my mother’s story, as the one thing I could do about her illness, and I realised that my themes of isolation, loss, grief,  families as experts in rare disease, bewilderment & lack of support were common to many other stories. Like herself, her story was unique, but the issues it illustrated were common to many.

Unfortunately, they still are, and I’m still telling stories to try and change that.

Why stories and not graphs and stats and charts and plans? For the same reasons I rarely use text in presentations: I’m the different voice in the room; why would I want to look the same? If I get the chance to talk to health service managers, it’s because I have something different to say. An alternative viewpoint merits alternative presentation- one that looks like ‘me’ rather than ‘how the system works’. (Also, I don’t have graphs or charts or plans.)

So, imagine my delight when I discovered that ‘how the system works’ doesn’t work anyway.

What the leader cares about (and typically bases at least 80% of his or her message to others on) does not tap into roughly 80% of the workforce’s primary motivators for putting extra energy into the change programme.”

Scott Keller and Carolyn Aiken (2009)

The Inconvenient Truth about Change Management*

Me and my story will potter on, sometimes talking about my mum and rare disease, sometimes talking about ME, sometimes talking about transformed relationships- always talking about valuing of the patient experience and time.

“Health statistics represent people with the tears wiped off”

Austin Bradford Hill

I talk about the people and the tears.

stylish girls
stylish girls

How do you tell your story?

What difference does it make?

 

 

* from Module 2 Building Alliances for Change, School for Health & Care Radicals 2015 #SHCR