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

#expressyourselfie

Social media have transformed aspects of charity fundraising. We all know about no make up selfies and the ice bucket challenge. All over the place, charities are hoping to benefit from a viral craze in their favour, if only they knew how to make it happen.

Herself had the rare neurological condition Progressive Supranuclear Palsy. (‘Progressive’= it’s only going to get worse. Shit happens. Tough. ‘Supranuclear’= it’s the messages from the brain not getting through to the bits of the body that move, see, cough, communicate, balance. ‘Palsy’= paralysis. Overall, a progressive paralysis that we can’t do anything about. See you in a year. Bye. ) As muscles stop moving, faces lose their expression, another form of communication is lost.

herself

 

Herself died 3 weeks after this photo was taken. This was a huge effort- sitting up and dressed, ready to greet the family, to be entertained by tales of school  and impressed by new Irish dancing steps.  Her face, like the rest of her body, wasn’t doing what she wanted it to.

But my face moves. I can do all sorts of silly things with it ( except get rid of that extra chin, the pointy nose and the wrinkles). Most of us are blessed with the ability to express our emotions on our faces. We can also exaggerate, be dramatic, laugh and just have fun with those faces. Girl1 and Girl2 spend a ridiculous amount of time posing for selfies.

The PSP Association want to capture all these things in the #PSPAExpressionSelfie.

I think we can do that

 

Go grab your camera/ phone, be silly and have some fun. Appreciate the little things you can do.

Share your pictures, make all your friends and family giggle, react and post their pictures. Have fun!

 

 

To donate to the PSP Association, please text PSPA02 along with the amount you wish to donate to 70070 (PSPA02 followed by a gap followed by the amount eg. PSPA02 £2 to 70070).

#PSPAExpressionSelfie Working for a World Free of PSP & CBD – The terminal degenerative brain disease.

what do I do?

This week, I’ve been recovering. Yesterday was one of those days where I got up in the late afternoon, had a long hot bath, put on fresh pjs, and took my hot water bottle to the sofa, before going to bed. Once upon a time, I’d have been upset by that. Now, it’s just one of those days. Not even a surprise, after some of the busyness.

I regularly post about the importance of support groups. Ditsy and I cause chaos across the six counties as we meet old friends and new friends in a space for PSP chat. Families, carers, people living with PSP, gathering to together to share and support. Hugs and tears are frequent but optional. It takes courage to come to a support group for the first time, to cross the threshold. To admit a need. To display vulnerability to strangers. The strength of a support group is that we all know. We have all been that bewildered. We have all been that anxious. We have learned the strength we can gather from each other. It’s not about the dismissive ‘tea and sympathy'; it’s about creating a welcoming, supportive, space.  A diagnosis of PSP is baffling. It’s a progressive, terminal, neurological condition that few have heard of. Finding someone else who’s familiar with it is like finding an oasis in a desert. A resource. A relief. At last. We are not alone in this.

 with Ditsy & MrD
with Ditsy & MrD

1 in 12 of the population is affected by a rare disease, and Northern Ireland Rare Disease Partnership work to influence strategy and policy in the UK and the particular implementation in NI. Last week, a crowd of us gathered to plot, plan and create. We have things to do- redesign our website, meet the NI Assembly Health Committee, participate in a Human Rights investigation, plan a big day out at the DisabilityPride event, keep on talking to commissioners, present at conferences, be creative about telling the stories. We are all volunteers. We’ve all had to learn something about rare disease. We have differing skills and experience; we work collaboratively. There’s always more to do. We do what we can. We’re doing more than I ever thought possible without significant funding or staff. Volunteering is amazing.

Also last week, I gave a talk to the Board of the local Public Health Agency. I talked a bit about PSP, a bit about the rare disease partnership, and quite a lot about the importance of working collaboratively with patients. Our Health and Social Care systems have a legal requirement to promote Personal and Public Involvement, but too often it’s seen as an add on or somebody else’s job. So I brought my thoughts and my shopping into a meeting of the big wigs. I didn’t show off my new shoes, but I got the impression they don’t get presented with Dr Seuss images all that often. That’s the value of a different perspective.

 

the lorax

Does it make a difference?

I think it does.  To an individual, to isolated communities, to people who recognise that their voice can have an impact, to senior managers to remember that they’re talking about people, not just numbers or conditions.

It makes a difference to me. I have a reason to get out of bed. I have people to talk to. I have support and opinions and I can make the big wigs listen to me. (Pause for a moment to feel for the big wigs.)

I have a chronic illness. I lose days to sleep and vagueness. But the little bit I can do reminds me of the mouthy busy bod I used to be, and that’s quite fun. I’m me, not ME.