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Medical Technology Awareness Week Reception at the Houses of Parliament

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Parliament from inside the gatesThrough INPUT Diabetes I got a chance to get to see the Palace of Westminster for the first time AND talk about diabetes tech to anyone prepared to listen. Two birds, one stone, what could have been better. Well actually I attended another great event afterwards too – blog coming soon – , so three birds, one stone, if that’s a thing.

The Medical Technology Group’s event yesterday was hosted by John Pugh MP and part of the group’s Medical Technology Awareness Week. The event sought to get people together discussing technology used to help people manage their conditions. Type 1 Diabetes is clearly a condition which has benefitted from the tech available, in fact it’s hard to imagine a life now without it. Of course I realise how lucky we are to have all this, in fact I realise how lucky we are to be able to get insulin without issue.

Matt and I travelled up together and arriving at Parliament all suited up I cursed ignoring his advice to borrow a coat as ‘it’s bound to rain’, as it did, just as we were waiting at security under a torrential sky; so I entered Britain’s seat of power drenched and dishevelled. Through security tighter than Paris last weekend and into the main Westminster Hall and meet our friend Alistair (Samuelson) and all took a sneak peak at the MPs discussing things in the House of Commons.

On the day before I left I tweeted to several MPs from my local area: Mim Davies MP as she’s my local MP; Caroline Noakes MP as she’s a neighbouring MP and I knew she had an interest in Diabetes; Suella Fernandes MP as she’s the MP for where I work. Suella was not in London that day but I was amazed to get responses from Caroline and Mim – am I allowed to refer to them by their first name, what’s the protocol here?
tweetdavies

tweetnoakes

The event was held in the marquee overlooking the River Thames, a marquee I’ve seen so many times from the other side. Collecting my badge I heard my name mentioned, an MP was here to see me. Crikey! Already?

I spent a good few minutes speaking with Caroline Noakes MP about Amy’s diabetes tech, talking about how Amy’s pump is life changing and she’d never give it back. Caroline has an interest in Diabetes, I’ve seen this often in media articles and events, and it made explaining things a lot easier. Unfortunately though Caroline had to go to speak in the Further Education debate happening in the House so our chat didn’t last long but I was very grateful for the chance to discuss the life-changing tech Amy uses.

Off to find the insulin pump table provided by Roche where Matt, Alistair and I chatted with Lesley (INPUT) and Philippa, whom I know from the #DOC (Diabetes Online Community). Philippa had been before and this time was one of the speakers; she admitted to being nervous and I knew exactly how she felt from when I did the Nightscout presentations a few weeks ago. I knew Philippa would speak well, she’s a very level-headed, knowledgeable patient advocate and hearing her speak I felt quite proud of what she was doing and saying. The audience was engaged, people didn’t leave the room, they didn’t shuffle about and whisper, they were held there listening attentively to her story, to effectively Amy’s story, to the story of many of my friends. I thought she could do with some praise from the #DOCPhilippa speaks at Parliament

mimdaviesMy MP, Mim Davies, returned for a chat and we spent a long time talking about the medical tech which is life changing for Amy, how we get some of it from the NHS and how we self fund CGM. I couldn’t help but show her Amy’s glucose readings on my Pebble watch and go into (probably too much) detail about how Nightscout is an unfunded parent driven group with 15000 worldwide families using Open Source software. Mim seemed quite impressed with the whole thing. We chatted in general about Type 2 Diabetes as through my research I knew Mim had recently met with Jamie Oliver about the sugar tax proposal and I mentioned that this would cost people with Type 1 Diabetes more as sugary drinks are also life saving medicine when hypo.

I loved this event and would encourage you to go to it or similar if you ever get the chance.

Cycling from London to Paris for INPUTDiabetes – How it went

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London 2 Paris Logo + Input LogoWhilst the cycle ride from London to Paris had nothing to do with Type 1 Diabetes as such I was raising money for INPUTDiabetes so here’s a little bit of information about how it went.

Fundraising

Initially I set a target of £320, one pound for every kilometre of my trip. This seemed like a good idea for me as I guessed I’d have some tired dark moments where it would be an effort to turn the pedals and the thought of raising another pound for just one more kilometre would spur me on. Luckily this never happened.
Initially the uptake for sponsorship was slow and I was worried that I wouldn’t even make £100 but towards the event itself sponsorship poured in and exceeded my target.
I raised £511 which will turn into £623.75 including GiftAid.
A key thing is that I never felt under pressure to raise this money, I didn’t have to pressure people to donate just so I could reach a target set by a charity, as is the case with organised London to Paris rides. These targets are generally £1500 minimum sponsorship for a trip like this.

How much did it cost?

£200.
Yep, that’s all.
If I’d gone on an organised event I would have still had to pay £100 up front.
The price included all travel costs, all accommodation costs and some food but not all. It doesn’t include any extra bike bits (pannier, rack) or clothes you might need to buy.

How did the trip go?

Honestly I don’t think the trip could have gone any better: the routes worked and we never got lost; our bikes didn’t break; the accommodation was superb; we all had a great time.
One unknown for me was how I would feel on days 2,3 and 4 having to get up and get back on the bike for several hours. Each morning though I woke up fresh and ready to get cycling again, excited about that day’s ride.
For more information take a look at the new blog I created all about the trip, particularly the Trip Reports area.

Fancy trying it yourself?

If you can cycle 50 miles at 10mph you can do this trip too. None of us trained to be able to ride the full distances day after day – see this training page for more info – and as you’ve got all day to cover the distances the pace can be quite slow.
I’ve created a new blog which details all the routes, the planning, the costs and reports about each days’ rides here: London to Paris Cycle Ride.

Why I am Cycling to Paris for INPUT Diabetes

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London 2 Paris Logo + Input Logo
Disclaimer: this post is all about fundraising – sponsorship link is here.

The beginnings of a trip

In preparation for doing last year’s 100km Nightrider charity ride with group of work colleagues we naturally formed a team bond, of people who just enjoyed cycling together. After the Nightrider event we decided that we’d cycle somewhere in 2015 as a team. It had to be a bigger challenge than before whilst not being so silly we’d never make it.
Many months later and the rough idea was formed: we would cycle from London to Paris taking in much of the Avenue Verte, south of Dieppe. With routes planned the trip works out at 320 kilometres, over 4 days, split into two days of 100km, one of 65km and the last of 55km.
This ride would be an aided ride, quite different from the normal London to Paris route where people are guided by a company who plan the route, the hotels, supply food, have support vehicles which carry your belongings and charge a fair bit for doing this.
This trip is a cheap trip, I’m organising the routes, we’re carrying our own gear and it’s going to be fun too. It’s costing less than £250 all in.

To fundraise or not to fundraise

Originally the plan was to get some sponsorship but after a while the group decided to just treat this as a holiday. I on the other hand decided to respond to Lesley from INPUTs question from the previous year “I wondered if you’d like to raise some money for INPUT, we don’t need much to keep going”.
So with that thought in my mind I decided that INPUT Diabetes would be my charity of choice for this trip.
If you’d like to sponsor me the sponsorship link is here.

Why not raise for a bigger charity?

Quite simply, I already have.
As a family we’ve already raised thousands for JDRF and as a national peer supporter I devote a fair amount of my free time to Diabetes UK.
Selecting INPUT was in some ways a difficult decision, given that there are so many smaller worthy charities I’d like to raise money for – DRWF, T1International, Diabetics with Eating Disorders, Seahawks – all of whom never seem to attract the fundraisers the way bigger charities like JDRF and Diabetes UK do.
These smaller charities need such a smaller amount of money to keep going and provide such a valuable service for the people they support.

A little more about INPUT

Unashamedly stolen from their website here’s a little more about INPUT Diabetes.
We aim to help any person who could benefit from insulin pump therapy, and has motivation to use it, to access it through the NHS. Our mission is to support patients by advocating for easier access to diabetes technology across the UK – from insulin pumps to smart glucose meters and continuous glucose monitoring.

INPUT the charity we’ve never needed

We’re the lucky ones, we’ve never needed to use the services of INPUT and although I’ve asked them the odd question we never needed their help, but so many others do. Raising money for them is more about recognising the great job they do advising people of a way forward to get an insulin pump, helping them through decisions about pumps and CGM.
Seeing Lesley at JDRF Discovery Days tirelessly trying to help others is a lovely sight, she’s such a great advocate for pump therapy. Hearing another one of INPUT’s team, Melissa, talk about the Diabetes UK Big Event was also great as spurred me on to looking into using CGM as soon as possible.

And finally…

Just in case you missed it…my sponsorship link is hereLondon 2 Paris Logo + Input Logo