All posts by speccy

how to write a thank you letter

Often, I am either asleep or anxious. I’m getting better at putting myself ‘out there’, less afraid of saying the wrong thing, confident in my knowledge and experience, but still, the anxiety sometimes wins. I either shut down totally or burble non stop. You know this.

Support, calming reinforcement, can come from the most unexpected places.

thank you from NIHRC

Of course it’s a form letter. Every organisation or individual who made a presentation will have received something similar. I hope everyone felt as good about it as I did. I hope FM and @imonlyslightly felt as good about it as I did.

I waved it at Spurs Fan and Dawnriser, beaming, as if it were written just for me. ‘Clear’, ‘articulate’, ‘able advocate’- he means me, he said that about me! I glowed with pride, and decided I could talk to any body, any time, no fear.

In truth, we can imagine that the reality of the thing was somewhere between his glowing remarks and my memory of the presentation, but for now, the reality is unimportant. How often do you get an official letter that actually makes you feel good? That’s not looking for money or blaming you for not being well enough to work?

A letter of thanks that gives a gift of confidence at the same time- I’m going to learn how to do that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

and now for the legal bit

It was a proper legal thing. A Human Rights Inquiry.

I was dreaming about it- and not in a good way, more in a wake up in a cold sweat sort of way.

I had armour (Kileen’s hand me down heels).

I had war paint (Claudia Winkleman is my eye makeup role model).

I was totally hyper andjustkeptontalkinginthecafebeforehand.

Then a phone call: would we like to be interviewed for local TV about rare disease? Of course we will. AAAARGH. What did I just agree to? What will we say?

We agreed key messages.

We were asked totally different questions. This meant thinking on the spot, on camera.( I haven’t seen what, if anything was broadcast.) I have no idea what I said, but I managed to get one of our key messages in. FM- our leader for the day- is experienced, calm and measured. We needed her.

The Inquiry was running late, which meant we got to watch others give their submissions. Calm, articulate, moving stories. All being recorded on video and by a court reporter.

Eventually it was our turn. We had name plates and water. We introduced ourselves, and I should have realised that I needed to calm down when I struggled to say ‘Progressive Supranuclear Palsy’. Why could I not remember about the deep breathing and happy place stuff when it would have been useful?

FM made our brief presentation. We were ready for the rest- they’d told us what questions to expect, and we had all the answers. We had all the answers prepared and written down in front of us. We may have been anxious, but we were the most prepared people in the building. We had this thing sussed; all we had to do was relax into the flow of it.

They asked different questions.

smiling giraffe, baffled

FM struggled to get a word in as @imonlyslightly and I seemed to believe we were taking an exam and, as is traditional, the question mattered less than our determination to tell everything we knew. We hardly drew breath- a result being few questions. They practically had to throw us out, still talking about the inequalities of rare disease, and patient and family expertise.

The commissioners retired to a darkened room for a tea break and we left, burbling all the way.

The court reporter is the one I felt sorry for.

moving beyond the silos

Northern Ireland is a teeny place. The region has a population of 1.8 million, many of whom know each other/ each other’s relations. In comparison, London has over 8 million people, Los Angeles has 3.8 million, the Greater Manchester conurbation has 2.7 million, Montreal has 1.6 million. For historical, political, and “that’s how we’ve always done it” reasons, we have complex systems for delivering our public services.

The regular reader will know of my developing interest in how healthcare is designed and delivered. I’m active in rare disease charities and patient ‘involvement’ groups. I speak about my own experience, and how the patient voice brings a different, necessary view on services. I’ve found twitter to be a remarkable source of information and connection. It was there I became aware of #ehealthNI14, an inaugural conference launching consultation on the NI eHealth and Care strategy. I asked if I could go. Yes, said the organisers, apparently pleasantly surprised that patients might be interested.

I wasn’t able to attend the whole event, but what I did get to was very interesting. There was a real enthusiasm to move our systems forward, and to recognise the voice of patients. Next time, I’m hoping that patients will be encouraged to attend, that the event will be obviously open to patients from the outset. Wouldn’t it be great if patients were co designing and co producing the conference? And all healthcare conferences? The door opened a little this week, and there seems to be a willingness to keep it opening. I am not the only one who will keep on pushing.

with @Noirin0Neill, @JBBC &@DrStevenKinnear
with @Noirin0Neill, @JBBC & @DrStevenKinnear

The formal talk that I found most challenging and inspirational was that from Nigel Millar, Chief Medical Officer of Canterbury, New Zealand. He explained how, seven years ago, financial and demographic change meant the need to re-examine the healthcare system for their area (about 0.5 million people). They agreed new priorities, new ways of working together and new systems. Get this, the system is designed not to waste patients’ time- and that’s how things are measured. “We saved 1.5 million days of patients waiting for appointments”. Healthcare communities (including 60% of GPs) developed agreed pathways for conditions and then allied health information for patients. Urgent care can be provided by teams in the community, people are being kept out of hospital. There is one budget, so the priority is to problem solve, rather than pass over the issue for another budget to pay for. The push for rapid development came after the 2010 earthquake. I understand that he is cheerleading for his own system, but it was wonderful to hear about a system that was designed around what matters to the patient. Because that allows the system to deliver safer, more effective, more efficient care, and a better experience. It’s more expensive to keep on getting things wrong than it is to design them with the right priorities in the first place.

this is not gospel!
do not take this as fact- my impressions only!

The Northern Ireland system is complex, but less so than it used to be. Conference speakers talked about how they still operate in silos, but that the developing technology is beginning to break those down. Historically the system keeps specialisms separate and information held by geographically based Trusts apart. “Moving a few miles down the road and expecting to have your information come with you? What nonsense!”- those days are, at least going, if not yet totally gone.

I look forward to the next time. I’m sure I won’t have to wait a year to get back in a room with some of the patient experts and healthcare leaders I spent time with this week. Particular thanks to @soo_cchsc and @HmmMoorhead for making it happen for me.

 

it’s the engine noise

It would be wrong to suggest that the old man and herself spent every weekend of the 1970s at a noisy, smelly event, but motorsport was a big part of my childhood. Sitting in the back seat of the Cortina, or in a caravan on top of a hill, while high speed rally cars passed a finishing line and slowed down. The old man pressed the buttons on the clock, herself wrote the time on the big sheet and on the navigator cards, and off the cars went to do it all again on another stage. The Circuit of Ireland, the Ulster Rally, Donegal Rally, Bushwhacker Rally, Knockalla hill climb and many, many more. Our family routine, for years. Since this was what we did, I decided to be interested in what was going on. I complied scrapbooks and knew who all the drivers were. Billy Coleman was my favourite: I even wrote to Jim’ll Fix It about him. Maybe it was as well that one didn’t work out.

rally car, hill, beach

So, really I ought not to have been surprised by the film Road about the motorcycling road racing Dunlop family, from Co Antrim. Two generations of world class racers. Two sets of brothers. A dangerous sport, with many fatalities. I’ve often wondered about the Dunlops. About what it’s like to be a woman in that family. What the film showed me was that while the particulars of the sport are not familiar to me, the community is. Joey Dunlop, playing about with his mates, working at an engine, touring the country at weekends- that just put me in mind of the old man and his cronies, laughing in a garage, giggling at an evil plan to wind one another up. Getting older and wiser and outing the brother from his room so they could play on the Scalextric racing set that Santa brought. The world of the Dunlops isn’t the alien reality I’d imagined. It’s oddly familiar to me, though an extreme version.

Road begins with a quotation from Milan Kundera: The man hunched over his motorcycle can focus only on the present instant of his flight; he is caught in a fragment of time cut off from both the past and the future; he is wrenched from the continuity of time…in other words, he is in a state of ecstasy; in that state he is unaware of his age, his wife, his children, his worries, and so he has no fear, because the source of fear is in the future, and a person freed of the future has nothing to fear.The film demonstrates the truth of that for those four men; Joey, Robert, William and Michael.

Everybody in Northern Ireland is familiar with some bits of the Dunlop stories, but that didn’t stop me being glued to the screen. I was gripped, anxious and elated. I was tearful, and I wanted to embrace the all of the Dunlop families.

 

I would have watched the film even if Lovely Liam hadn’t been narrating, but his voice tell a wider story. He’s from just down the road from the Dunlops, but brings an international dimension. This is about one family, one minority sport, yet tells the story of families, brothers, and what we all do to survive.

 

 

 

You won’t have to have had a childhood surrounded by loud engines and motoring magazines to appreciate Road. In the UK, it’s available on BBC iplayer. Also released on DVD/ other formats I don’t know anything about.

photo of Knockalla hill climb, the most beautiful of all hillclimbs, from http://flickrhivemind.net/Tags/knockalla/Interesting