Why support the RHN?

Whilst trundling down the country at not-particularly-high speeds I had a lot of time to think about why the RHN (Royal Hospital for Neuro-disability) matters to me so much. Yes it’s helping Danny of course and giving something back for that feels natural, but for me there’s something more to it than that.

Firstly, the atmosphere there is totally different to any other hospital. Being independent from the NHS does make a big difference because it doesn’t seem to feel bogged down in bureaucracy and policy. Don’t get me wrong, I’m a staunch supporter of the NHS and the Princess Royal Hospital in Bromley saved Danny’s life for which we’re eternally grateful. It’s the simple things though. For instance, there is a patient smoking room attached to the main building. If this were an NHS facility you can bet your life that someone, somewhere, would have made it their mission to remove that facility and force the patients and residents to wheel themselves out to a shelter at least 6 meters from the nearest door, whereas the impression I got straight away was that someone at the RHN said “the people here have it hard enough as it is without forcing them to go cold turkey or brave the elements”. Whilst their services could exist elsewhere, the atmosphere just wouldn’t be the same if it were part of the NHS.

Secondly, what happened to Danny has made me realise that each and every one of us is a lot more vulnerable than we’d perhaps like to think. At the risk of sounding very depressing we’re potentially only an illness or a moment’s lapse of concentration resulting in a car accident from needing the support of an organisation like the RHN. It’s not a particularly altruistic motive I know, but I want to support them (and other organisations like the Anthony Nolan trust for instance) because I feel a lot better knowing that they’re there and they’re in good shape in case I’m ever the one who needs their help.

If you haven’t already donated please spare a couple of quid to support what is a great organisation doing a great job. I’ll do a write up of my experiences of the moped ride itself in the next few days!

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So while Paul, Alice and Brendan drove the van holding 7 mopeds from Fareham down in the South of England all the way up to John O’Groats at the very North of Scotland. A very long 15 hour drive! I (Matt), Michael, David and Joey had a quick 1 and a half hour plane ride from Gatwick to Inverness and an express coach to John O’Groats, arriving around fiveish. Here we all are:

A quick 1 hour walk to the youth hostel later and we were settled and waiting for the van team. They arrived a few hours later, exhausted and bearing food, which Joey cooked up into a massive vat of spagbol.

An early night ready to get up early in the morning to start the trip!

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Loading up

Tomorrow we all head up to Scotland, 4 of us by plane and the other 3 are driving the support van containing the mopeds up. Having spent the entire day finishing fixing them (we discovered yesterday that 2 of them didn’t like rain) here they are ready to be loaded into the van (along with our banner behind them).

Three of our riders. From left: David, Paul and Brendan, fingers crossed that it’ll all go well and there’ll be no problems.

Having spent much of their free time over the last couple of weeks fixing up 6 cheap and broken down mopeds, Brendan and Paul are exhausted as they finally finish working on and loading the mopeds into the van.

The mopeds are all in, and ready to be driven up to John O’Groats at 5am tomorrow morning.

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The Mad Hatter part 2

Today was founders day at Danny’s hospital, it seems to be an excuse for everyone to dress up oddly and have the nurses make foolish entertaining performances. The theme this year is characters from Disney films, so Danny joined in my dressed up as the mad hatter.

Founder’s Day is our annual summer event which celebrates the
founding of the RHN by Dr Andrew Reed in 1854. It is a day when
all strands of the RHN come together as a community and enjoy
activities and entertainment under a theme

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The Mad Hatter part 1

As the team gets ready for the moped ride, Danny is busy getting ready for founders day – trying on his mad hatter hat.

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Live Tracking

A few more days to go, our latest announcement is that we plan to use Google Latitude to publish live progress of our ride – we’ll rejig the website so its smack bang in the middle of the front page during the ride, here is a preview.

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Less then two weeks to go and everything is in full swing! We’ve got most of the mopeds ready and done some speed testing on them – the fastest one we have (remember, they are all 50cc) has a top speed of 45mph but on a test ride we only averaged 20mph because of its poor acceleration, traffic conditions, etc.

The plan is currently to travel up to Inverness on Thursday the 23rd of June, stay overnight and start the ride early on Friday morning, we estimate the journey down to Land’s End will take three or four days, though we’re aiming to get to complete it in three days through sheer force of will.

We’re still looking for help with accommodation en-route, food, petrol, etc and of course, the main reason we’re doing this is to raise money for the Royal Hospital for Neuro-disability, so cash donations are important too.

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Seeing Danny again

I hadn’t seen Danny for well over a month, since the end of February when he was still in the Princess Royal ICU, so I wasn’t sure how he was doing. But I was pleasantly surprised.

Last time I saw Danny he was mouthing words and communicating with us via a giant spelling board; he’s now speaking! Slowly and deliberately and it can be quite hard to understand at times, but it’s a lot of progress and means Danny can communicate with us properly and quickly, and importantly with the nurses, doctors etc. So he’s able to let people know when he’s in pain or not comfortable, which has meant he’s generally in better spirits now.

As you can see, Danny is refusing to let anyone shave him at the moment; he wants to wait until he can shave himself. Even if he’s starting to look very scruffy!

Danny has physical therapy and occupational therapy every weekday, as he basically has to relearn using his muscles. But progress is good there too. Danny has quite a lot of movement in his right arm, and starting to get a bit of strength back in his hand. His left arm is still very weak, and he can’t move his legs at all, but he’s getting there. He’s even doing arm exercises on his own, outside of physio, to try and improve quicker; we all know how stubborn Danny can be!

On Tuesday Danny had his personalised wheelchair delivered, with a special inflatable bumpy cushion shaped for him to make it more comfortable. He’s been allowed in the wheelchair for an hour a day so far, which is about his limit anyway as he starts getting very uncomfortable after that. But yesterday we took him outside into the hospital grounds, the first time Danny’s been outside in pretty much exactly 4 months! So he was very happy to be out, see the grass, sky, sun etc. without being behind a window.

So now that Danny’s in his wheelchair he should be able to accelerate his recovery, with an optician appointment (his eyesight has been hit) and water physio in a swimming pool in the near future. We’re also hoping to have picnics in the grounds of the hospital once Danny can spend a bit longer in the wheelchair.

I’ve been impressed with the RHN so far, they have the specialist equipment, nurses, facilities and knowledge to help Danny recover much quicker and better than when he was in ICU. He’s progressing faster in the last couple of weeks (he’s been there 2 weeks tomorrow) than in the previous month or two at the Princess Royal.

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Danny’s move to RHN

Danny ready for transport

After many months of uncertainly, waiting, three hospitals and one elderly persons’ ward, the day has finally come for Danny to move to the Royal Hospital for Neuro-Disability; we’re all very excited.

We got off to a rocky start as Danny’s transport turned up late and Danny felt a little travel sick when we finally got onto the road, but it was worth it. We arrived through the gates of the hospital around 1pm and wheeled Danny out through the main reception and onto his new ward, Drapers ward.

Drapers ward has around 20 beds, all for people in similar situations to Danny; most of the other patients there seemed quite happy and were zooming about in customised wheelchairs or finishing off lunch when we arrived. Danny has a nice bed next to the window in one of the four bed side-rooms.

Within a couple of hours of Danny moving in he had met a large portion of the team that will be looking after him, a fairly big team including a receptionist, physical therapists, nurses, occupational therapists, etc.

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Start Donating!

We now have a Virgin Money Giving page set up so we can start taking donations (Virgin Money Giving takes a smaller cut from the donations then Just Giving do), so please, donate and spread the word!

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