celebrating and connecting

I was exhausted and looking forward to time in the Great Wilderness of the West (a remote caravan site on top of a Donegal hill). We’d lie about together, play board games, explore beaches and generally chill out. We’d also investigate various hostelries for a few moments of internet access. I blamed the children…

I could have stayed in the caravan for ever, but it was time to pack up for the winter. Spurs Fan and Jake came home, surrounded by bedding and laundry. The girls and I moved into a hotel with a swimming pool and heat. We were at regional Irish dancing championships, and I didn’t have to drive anywhere. I could relax, and reconnect with the outside world. There were hundreds of dancers & hangers on, all of us looking for wifi. Ok, some were looking for good performances and medals, but everyone wanted wifi. It didn’t work.

I was full of excitement and disbelief. After months of delay, the NI Rare Disease Implementation Plan was going to be launched. We’d been working and lobbying and gently encouraging. I’d resorted to a little twitter nagging. The occasional Health Minister was studiously avoiding his constituency office, in case Ditsy was still there, waiting to talk to him. I wanted to shout it from the roof tops. I wanted to jump for joy. We were being listened to and involved. Huge steps forward for rare disease in NI were being announced.

And I was miles from home, with dodgy internet access.

Late at night, I saw a picture of Chair, the Health Minister (back to full time), and one of our friendly neighbourhood geneticists. Not only do we have a plan, we’re getting a Genomic Medicine Centre, a fantastic resource for speeding up diagnosis.

christine, simon, shane

“It’s happening, it’s happening, I must send a message… oh, internet down again.” I was so excited, and had nobody to share it with. The other mums nodded politely as their eyes glazed over. The girls said ‘that’s good’ and went back to practising clicks and jumps and being fierce.

By the time I got back to reliable internet, my brain was too fogged to think, or communicate, or to read anything.

Eventually, I will makes some sense of what lies ahead for us. In the meantime, a little kitchen boogie is appropriate.


on not being a threat (revised)

I felt very comfortable waving a placard. I’ve done it many times over the years, but never in such a warm, dry place. A hotel conference room, with sausages and mini quiche to follow. I was inside, talking to the system rather than outside, shouting at it.


I seem to have spent the last few weeks talking to slightly different healthcare audiences. I’m glad to do that because it makes connections, it gets our stories heard, it takes rare disease and patient ’empowerment’ out of a strategy document and puts them front and centre. It’s something I can do.

I’m done now, though; body and brain both weary and in need of rest. If only it wasn’t for that pesky niggle.

Safe. Token. Cosy. Soft.

A gal could have her head turned at these events, what with all the gushing that goes on, with all the people who suddenly see a possible solution to their patient problem. Could you…? Would you be interested in…? Would you like to…?

‘If only we could have 100 of you’, said a well meaning chap, somewhat missing the point. There are many, many, patients and carers doing exactly what I do. They take time away from their families and try to influence. They try to get their voices heard, their opinions shared. They are volunteering for charities and participating in Public and Personal Involvement groups, just like me. And, somehow, the system doesn’t see us all yet.

This week some of the system saw me. Relaxed and chatty with 60 odd insiders. I too was inside. I looked like a useful being.

What they didn’t see was the experience, the tears and heartache. They didn’t see the anger and waste and loss. I didn’t share my clichéd ‘journey’. I wasn’t talking about the hours of learning to work in partnership, the online and real life courses, the mentoring, the relationship building. The sheer effort and frustration of learning to be effective was hidden. The investment by me (and in me) and others, patients, carers, committed public servants and fellow volunteers wasn’t apparent to them. I fell into their line of vision without apparent history or support and that looked easy.

It’s not. Any long term readers will know something of the chaos in my world and my head as I’ve tried to process being an unemployed, unhealthy, orphan. I don’t have the day to day demands that many colleagues have- my family are healthy and I’m not run ragged going to hospital appointments. I’ve been able to put time and energy into learning how to influence. Two minutes on ‘why I have a placard’ could never tell the whole story.

I’ve been talking and talking about the need to get patient voices heard, listened to and valued. That means all the patients. That means providing support- from respite and transport to coaching, shadowing, mentoring, as desired. There are no easy ways out.

Do the work; demonstrate the value.

One white haired, smiley woman cannot, will not, and should not fill each gap where patients should be.


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

it seemed like a good idea

Normally my great big ideas for change are moderated by lethargy, Spurs Fan or common sense. I’m very enthusiastic for a wee while and then I never think of it again.

Unless I meet an enabler during that time. Then, things could get expensive, radical or drunken.

Today I was fed up with my boring little old lady white-ish frizzy hair. I’ve had a bob for longer than I can remember. I wanted something different, something dramatic that didn’t involve a darker colour (roots issues) or any effort from me (laziness issues).

As it happened I had a hair appointment today.

I’ve now got white-ish, frizzy, lopsided hair.

Asymmetric, she said. The looks from other pedestrians on the way home said something else.

curly, aysmmetric, white hair
scary pic


Maybe I’ll grow into the bravery of it. It’ll be grand in a fortnight.