Archives: Charity

It’s been a really strange day today, giving me a surreal, 3rd-person insight into how my life has changed in the last 13 months.

I was out for the day filming with Emily for the Live Life Then Give Life website – part of our new media project to add even more impact to our life stories by getting the people in question on film.

First port of call was our fabulous advocate (or Fabocate, if you will) Jess, who has been waiting nearly 3-and-a-half years for a double-lung transplant and is now way beyond the “worrying” stage of the wait and headed rapidly downhill. Sitting an interviewing her at her home in Kent, I remember how similar I was last year just weeks before my call – I couldn’t really move around, everything was a struggle and, mentally, I was right on the verge of giving it all up.

She also made me realise, however, just why people find people with CF so inspiring. As I sat and watched her making light of her situation while pausing for enormous, breath-stealing coughing fits, I saw in her something which I suppose many people once saw in me – a determination not to be beaten by something we’d battled for years. More than that, though, I sat there and wondered to myself how on earth I did it.

At the time, you don’t really have a choice, you just get on with it, but looking at it from the outside yesterday I could see just how much hard work it is to stay alive and keep fighting and I was blown away by Jess’s willpower. She’s a phenomenal girl and I hope and pray that she gets the call she so desperately needs now.

By way of total contrast, we left Jess in the mid-afternoon and traveled to Epsom in Surrey to talk to another one of our advocates, Lisa, who is celebrating, like Emily and I, her second Christmas post-transplant. In fact, Lisa, Emily and I were all transplanted in 2007, spreading ourselves through the year – Emily first, in January, Lisa later on and then I brought up the rear in November.

Talking to Lisa I was given chance to reflect on the changes that happen between the state we were all in pre-transplant and the freedom and joy we all feel now it’s behind us. We’re all incredibly lucky people, but it made me realised even more strongly than usual just why we all work so hard to raise the profile of organ donation – this life we’re living now is amazing, remarkable and truly miraculous, but we still lose over a 1000 people who need a transplant every year. That’s more than 10% of the people who are on the waiting list.

It doesn’t have to be like that – we can all help to change it by talking to our loved ones about our wishes and making them talk to their friends and their families and to let everyone know that giving someone the gift of life when you no longer have yours is the greatest thing anyone can do for another human being.

Sign up. And Talk.

Today was both an emminently enjoyable day and a massively frsutrating one.

A while back, as you’ll no doubt have noticed from the banner on the right of the page here (unless you’re reading this through in the archives in the middle of 2011), I signed myself up to take on this years doitforcharity.com Santa Run through Greenwich park.

At the time – about 7 weeks before the run – I thought that a small, fun 5k could be just the right way to ease myself into the physical challenges I’ve set myself for the next couple of years.  I’ve developed a bit of a master plan that I’m not going to la out on here because I’ll only fall foul of it at some point and feel lousy, but suffice to say that a 5k before Christmas seemed to be a good way of easing myself in.

Then came my port op at the end of last month and truly knocked me back.  Not physically – or at least not in my chest – but the pain in my shoulder and the general disablement it brought caused me to have to stop running.  I figured that even having missed a week’s training I’d still be good for the run, but it appears that my shoulder protests too much.

Any kind of movement of the shoulder, particularly harsh, juddering, running-style movement, has been really painful and – mindful of the fact that I’d have to operate a car all the way home after the event – I had to take the disappointing decision to “drop out” of the run.  I say drop out, but that’s really not true, I just ended up walking it instead of running it.

I was, frankly, really bummed about it the week leading up to it – the whole point of the exercise had been to give myself a physical challenge to round of what’s been an amazing twelve months – but as people kept pointing out to me, it’s a big step forward.  I just wasn’t so sure it was, after all, I’ve done a lot of walking since my op, not least back in October when I not only walked 5k, but did it with a video camera on my shoulder to shoot Nelly’s World’s Biggest Walk.

It was only once I was actually walking around the park, breathing in the freezing cold but deliciously crisp winter morning’s air that I realised what a difference the last year has made.  At this point 12 months ago, I was just learning to wobble around the ward on two very over-sized legs in between bouts of dialysis to keep everything under control and on course for a Christmas release, a date which seemed to be looming without signs of improvement.  To be wandering freely through the park today, holding conversations and pushing Nelly up a really steep hill (until her family came to a perfectly-timed rescue) is a miracle beyond words.

I feel like I spend every post on here at the moment in a moment of thanks to my donor and their family, but if it wasn’t for them I’d never have had the chance to do all of that.  And I’d never have seen my Great Cousin born last night, either – so thank you all, whoever you are.

Today marked the start of something more than exciting for me.  Last week, Live Life Then Give Life invested in a new media production package of professional equipment with which to document all the activities we’re involved in, as well a creating short films and videos to play at events and talks being given by any of the trustees or advocates.

Today one of our advocates, the irrepressable Nelly Shah, orgnised one of the 108 World’s Biggest Walks that took place at the same exact time (12noon GMT) in 18 countries over 5 continents.  Emily and I headed down (well, she came up) to Stanmore in Middlesex (just off J4 of the M1) to join her and her family on their 5km walk around Stanmore and Edgeware to raise awareness of organ donation and the chronic shortage of donors, particularly in the black and Asian communities.  Nelly, who’s originally from Kenya, has now been waiting for five-and-a-half years simply because of the dificulty of matching her tissue type with such a small pool of donors.

I took our equipment down and shot my first professional documentary pieces, as well as several interviews, which will go into an awareness-raising, high-impact video package for a talk Emily’s giving next weekend to an audience of over 2000 people from the Tamil community.

It was unbelievably exciting and I’m so amazingly pleased to have been given the opportunity to do this by the guys at Live Life Then Give Life who have placed an enormous amount of trust in me to deliver high-quality product to help the charity achieve its objects.

Of course, that’s only half the task, I now have to assemble the footage into usable pieces – one for the website to promote the walk and one, longer, piece for the talk DVD, which will also include an interview with two parents who have recently lost their 15-month-old son for want of a liver and small bowel.

It has to be said that I do feel a certain amount of pressure to deliver now, as it was me who spent a lot of time and energy researching the equipment and talking to the other trustees about the benefits and pluses of investing in the camera and sound package.  But, to be honest, I’m actually quite enjoying the pressure as it’s been a while since I actually had any pressure on me to achieve anything at all, so it’s nice to have a target.

It’s been an absolutely manic last couple of weeks, I literally haven’t had more than about an hour to myself in a single day since, well, actually, I honestly couldn’t tell you without looking back through my diary.

Suffice to say it’s been extremely hectic, but pretty good, too, I have to say.

Last weekend was spent with the Live Life Then Give Life gang, hashing out our plans for the next couple of years.  It’s a bizarre feeling to be mapping out plans that I actually believe I have a chance of being part of.  I’ve been so used to limiting my planning no further ahead than the next few weeks or couple of months, but now I find myself looking further and further into the future.  I have often helped people plan for things in the future – I’ve certainly helped Emma and Emily with it before, as I also did with K’s uni application – but I never really joined in with the expectation that I’d ever be a part of it.

Now things are looking brighter and brighter and my horizons are stretching further and further away.  It has just occurred to me that for the first time ever, I think, I’ve stopped worrying about whether or not I’m going to be around for things.  My cousin is just 6 weeks away from the birth of his first child and this time last year and for a good while before that, just the news of the pregnancy would have set me off wondering whether I’d ever get to see Baby P or not.  Sitting on the sofa tapping away now, I realise that the thought of not being around hadn’t even occurred to me up until now.  I guess this is what “normal” life is like!

Anyway, that’s the last couple of weeks.  Today was different again, being as I was engaged to speak at two different events in one day, both for the CF Trust.

First off, was back in an old haunt – the Mermaid Theatre (sorry, Conference and Events Centre) in Puddle Dock near Blackfriars, the very same Mermaid that supplied the venue for the enormously successful Laughter for Life event way back in February/March last year (for some reason I can never remember when it was without looking it up).

The event was a Parents and Carers conference that the Trust had laid on, this time for parents of teenagers following their enormously successful Under-12s conference previously.  I was engaged to speak, rather oddly for me, with my dad, which threw up all sorts of weirdness around having to “plan” what we were going to say.  Anyone who’s ever been to see me speak knows that generally, I just stand up and ramble for 10-15 minutes, but this time it was a joint presentation with Dad on teenage rebellion which was to last 30 minutes.  Nightmare.

Actually, it all went rather well.  The planing process was interesting in and of itself, sitting talking to Mum and Dad about how they dealt with the various ways I found to do myself a mischief back in the glory days of the 1990s.  I clearly put them through a great deal of angst through my teens, even though I don’t consider myself to have been a massively rebellious teenager (I’ve certainly come across many more people with CF who were far worse).

The speech went fantastically, though – we worked very well together as a team and managed to both entertain and inform the attendees, who seemed to spend most of the half-hour slot nodding in tacit agreement with everything Dad said about my various misdemeanors and rebellions.  Glad it helped.

Once that was over and we’d done a quick Q&A panel with the afternoon’s other speakers and spent some time chatting individually to some parents who came up to address specific points with us, it was then time to dith the grey one and for K and I to hop back in the car and head North up the M11 to Bishop Stortford, or there abouts.

One of the regional fundraising managers for the Trust had helped put on a ball for a couple with a teenage daughter with CF and had asked me to come and speak.  The very same Trust-lady who’d had me along to the Press Ball in Ipswich earlier in the summer, in fact.

The night was amazing – you’d have been hard pressed to find any hint of a credit crunch among the 150-strong crowd, who managed to raise by way of pledges and auction bids a total of £43,000.  Phenominal.

I was, to be honest, pretty diappointed with my speech.  The afternoon had taken so much planing I’d frankly neglected the evening’s event and didn’t allow myself sufficient time on the night to prepare myself properly and go over what I wanted to say and do.  That being said, I still received the usual praise from the people I spoke to, but I wasn’t pleased with myself for it.  Must do better next time, that’s how I’ve marked my report.

Still, it’s been a great day and I’ve enjoyed both events greatly.  The CF Trust has offered me so much advice and support for so long and through such tough times that it’s really important to me to continue to do whatever I can to help them and to offer, if I can, some crumbs of comfort or advice to people who may be struggling now.

Someone suggested this weekend that maybe I should think about getting myself on the after-dinner speaking circuit, which got me thinking.  If I was touring the country being paid for my time and talking to groups of business people for inspiration and the like, would I be as good at it as I am at the moment?  Is it the drive to inform and the will to get people to pledge ever-important donations for the work of the Trust or the transplant community that makes the speeches and talks what they are?  Would paid-for talks be able to engender the same passion and commitment?  I honestly don’t know.  Mind you, it can’t hurt to try…

I was planning on going back over the last two weeks and updating the day-to-day entries of the blog to reflect all that I’ve been up to, but I soon realised that a) I’d be here all day and b) I’m not even sure I can remember exactly when whatever happened to me in the last fortnight happened.

To sum up, if you can’t be bothered to read this entire post, I have started two jobs, started a new screenplay project with a friend, pushed a short film project towards production, acquired another short film script, begun developing a slate of documentaries, watched my brother leave for a tour of duty overseas and won a Charity Times Award with the Life Life Then Give Life team for Campaigning Team of the Year.

So, biggest news first, I guess (apart from the Award, which I’ve obviously already covered), I’ve got a job.  Two, to be precise.

A couple of weeks ago, I was looking for some part time work up to my sixteen-hour-per-week limit to retain my benefits (and beyond which I’d need to work a considerable amount more hours) and noticed an ad in the local paper for a hotel looking for part-time bar staff for lunchtime shifts.  After going over to introduce myself and fill in an application form, I text my old boss at the Theatre in MK to ask for a reference for the bar work, since she was the last person who employed me as bar staff (albeit five years ago).

She replied positively, but then said that if I wanted bar work then they could offer me a job.  Without much fanfare, I went back for a training day a week last Monday and started my first shift of paid work for two-and-a-half years on the next night.

It’s a very bizarre mixture of feelings being back at the Theatre.  On the one hand, it’s pleasantly familiar – I know most of the managerial staff (even if high turnover means the bar staff are all new to me) and also where to find most of the things I need during a shift.  The bars haven’t changed much, apart from some of the stock having changed – Becks to Tuborg, for instance, and the appearance of Magners in the fridges.

At the same time, while it’s a safe and comfortable environment to start back into a working life, it also feels a little like a step backwards.  I’m now back doing what I was doing in 2003, before my work with the Education Department and the Youth Theatres in MK and Northampton and before the experience I gained as a Production Assistant/Youth Theatre Production Manager at the Royal.

I guess the way to look at it is that as long as I have the income I need to pay all of the bills, the Theatre work is only three or four evenings a week, which frees me up to work on my own projects during the day time, for which I have a lot more time free now that K has started at Uni.

Thursday was her official first day and it was a bit of an epic one.  The commute means that we have to be up at 6am to get to the station for 6.45/7ish for the 7.11am train to Euston.  Luckily, looking at her timetable for the term, it seems that she only needs a 6am start two days a week, getting a lie-in on Mondays and Thursdays and having Fridays off.  It is very much an atypical Uni course however, having as it does, a full timetable of lectures and lab time.  Monday mornings and Fridays are all the time she has off, Tuesdays, Wednesdays and Thursdays are all 6-8 hour days.  It’s intimidating for her and it’s going to be tough, but I know she can do it and I’m sure she’ll be fantastic as a Speech Therapist – even if that is four years away right now.

As well as starting at MK Theatre, I also went to catch up with my old Education boss at MK, who has now moved to the Grove Theatre in Dunstable, about 20 minutes down the road from me.  Whilst catching up with her, it emerged that she had another Youth Theatre Assistant position opening up to help out with running the Sunday afternoon YT sessions for the eldest two groups of the Grove YT.

Naturally, I jumped at the chance to leap back into the deep end and get my hand in again.  Last Sunday, I enjoyed my first day working with the YT in the first session of term and enjoyed it immensely.  It’s hard work – much harder than the MKYT, actually – but the young people who attend the sessions offer much greater opportunities for rewarding work.

As well as the Grove’s YT, I have also just started work on the school’s project I’m doing with Suze and her newly minted Catalyst Theatre Arts Ltd company.  At the moment, it’s not 100% clear what my role will consist of, as I’m largely there to support the school and do what they need me to do to ensure they make the most of the project.  It’s exciting for me as it’s the first time I’ve worked and been engaged as a “proper” artist, being seen as a practitioner in my own right and not as an assistant or general helper.

Personal project-wise, I’ve now got a producer on board my short film, which will be going into production over a weekend in early November.  We have offers out to cast at the moment and are hopefully of getting a couple of recognisable names, although it largely depends on their schedules, as I’m keen not to push our shoot dates back.

I went to a Screen South roadshow this week, which highlighted the pots of money on offer for short films in the South East of England, but all of them require the director (that’s me) to have a show-reel of stuff they’ve shot before.  This is a bit of a classic Catch-22, but since this film can be shot for next to nothing, I’m hopeful that even though I’ll miss this funding round, the script I’m developing at the moment will be a possibility for the next round.

I’ve also just started writing a feature project along with a friend of mine who’s as keen as me to get writing again.  It’s a low-budget British horror-comedy which we’re hoping will be quite saleable, or at leat easy and cheap for us to make ourselves if that turns out to be the more likely option.

Beyond the fiction stuff I’m working on at the moment, I’m also developing a trio of documentaries.  Two of them are quite immediate and one is longer-term planning.  One, in fact, I’ve already started shooting a video diary for and am currently working on establishing links with the Armed Forces to see if I can take it further.

It’s been a manic two weeks and blogging really took a back-seat to all the other things I was running around doing, but I’m sincerely hoping that having more time in the day to achieve the things I need to will enable me to keep a more day-to-day blog of the things I’m up to.  I’m aware of how great a resource blogs can be to keep tabs on people and gain encouragement for the kind of life it’s possible to lead post-transplant, so I really do hope I can keep it up.  Please keep checking back and feel free to berate me if I’m lax again.

I know, I know, I know – it’s been WAY too long since I last updated, but trust me, I’ve been busy.

I will endeavour to find some time over the weekend to give a full and proper account of the, frankly, crazy-busy and pretty momentous events of the last couple of weeks, but I just had to jump on for the last 5 minutes my brain is operating today to shout about Live Life Then Give Life, the award winning charity.

I’ve been somewhat remiss in not talking on here about our recent nomination for a Charity Times Award for Campaigning Team of the Year.  The Charity Times Awards is a prestigious charity-sector awards ceremony that recognises the best in not-for-profit work and those who support chartiable organisations.

Five of our six trustees managed to make it down to the Lancaster Hotel in London last night for the Black Tie dinner at which we were all shocked and delighted to be announced as winners in our catagory.

The judges said in their citation, “This was an outstanding campaign made up of many effective and innovative strands and appraoches, achieveing great sucess.”

We were all amazed to be thought of as the campaigning team of the year, although according to the sponsor there was only ever one winner, which is overwhelming and a great boost for all of us.

We had happily resigned ourselves to making the most of the PR opportunity that being nominated for such a renowned award in only our first year as a charity, so we were all overcome with emotion when we headed up to the stage to collect our awards.

The appalause and good will from the other charities at the ceremony made us realise how well thought of (and how much more well known than we had suspected) Live Life Then Give Life is.

To see Emily, Hal and Jen’s faces as our name was announced (and it’s a picture, let me tell you), check out the video here.

We partied long and hard into the night (although mostly alcohol-free) and came away buzzing.  We have all invested so much personally into this charity since we first got involved with Emily and Emma’s campaign back in 2006 and it’s indescribable what this recognition means to each and every one of us.  We are so aware of all the help we get from our supporters and our advocates, who go out there and tell their stories and help to increase awareness of our desperate need for more donors in this country.

Rest assured, though, we will not be sitting back and feeling chuffed that we’ve done our job now we’ve got an award – if anything, this has motivated each and every one of us to keep ploughing onwards.  In the words of friend, top blogger and independent filmmaking guru, Chris Jones, “Onwards and Upwards”.

Live Life Then Give Life continued our assault on the corridors of power today as Emily and I went along to a lunchtime lecture at the Department of Health to talk about organ donation and the reasons behind it.

The talk was ostensibly to let the civil servants know the kind of policy issues they would have to address regarding organ donation in the coming months and years and was given by a lovely lady called Triona Norman, who had attended our Treasury talk and seen how great we were(!).  Emily and I, along with a friend from the Treasury, went along to give personal experiences and help to illustrate the difference a trannsplant can make.

It was also incredibly useful because we got the chance to meet and chat to Chris Rudge who is the new National Clinical Director for Transplant, otherwise known as the Transplant Tsar, who is in charge of implementing the changes recommended by the Organ Donor Taskforce report from last September.

Apart from the obvious bonuses of meeting and getting to know the Head Dude of transplant in the UK, it was fascinating to hear him talk and address many of the issues and common questions people have about organ donation and transplant.

As a national transplant charity, we often find that the same questions are fired at us constantly, mostly regarding our relation to the Spanish system.  It has been my personal position and the position of the charity as a whole, to point out to people that the Spanish system doesn’t excel simply because they follow a system of presumed consent, but rather because they have ensured a significant investment in the infrastructure needed for transplants, including staff training and – most significantly – a much larger number of intensive care beds than we have.

This is significant because the vast majority of organ donors die in intensive care, which means the more beds we have, the larger the pool of potential organ donors.  Interestingly, Chris Rudge also said that only around 20% of organ donors are victims of road traffic accidents.  Much more commonly, the cause of death is inter-cranial bleeding, more commonly known as a stroke, which can affect many young people as well as old.

The most significant part of Chris’ talk, however, was his reaction to the introduction of presumed consent. He is very keen to set up an investigation to see whether or not an Opt-Out system would actually increase the donor rate, or if other factors are more significant.  This is a breath of fresh air to me, as I’ve been saying since the recommendations came out that it’s not a given that presumed consent would increase the number of transplants.  It may increase the potential donor pool, but that’s not the same thing at all.

It’s great to get invited to talk at these events, because both Emily and I have learned from experience that making the issues personal makes and enormous difference in driving the points home to people.  But this was more of a bonus than usual, thanks to the chance to meet and chat with Chris Rudge and some of the people who actually have the power to make a difference.

I spent most of this afternoon in a meeting with Emma and Emily, two of my fellow Trustees of Live Life Then Give Life.  I say fellow Trustees, what I actually mean is my superiors – as Chairman and Vice-Chairman of the charity respectively, they’re far more important than me.

Anyhoo, we spent a good few hours pouring over the construction of a firm business plan for the charity, something that Emma has been pushing for us to do for an age, but which all of the Trustees have been unfortunately lax in organising and offering in-put for.  I’ve been one of the worst offenders, knowing how important it is, but never setting aside the time to think about it properly.

Being locked in a room with the girls made us focus properly on the bits of the charity we needed to focus on and work out our strengths and weaknesses, where we’re good and where we can improve.  It also gave us a chance to analyse where we can best fit in with the rest of the transplant charities in the UK at the moment.

Obviously, still being very much in the planning stage (the other three Trustees have to look at and approve our ideas, for starters), I can’t really go into a lot of detail, except to say that I think we have finally identified what we do best of all and are now hoping to commit ourselves to rolling it out as our “thing” which we can use to promote organ donation in this country without treading on the toes of everyone else in the Tx community.

One of the key things we have identified with Live Life Then Give Life is our fantastic standing and relationships with people in the transplant community, both transplant professionals, people affected by transplants and other charities themselves.  Because of this we all saw it as being vital that we strive not to replicate, but to complement other people’s work.

Too often in the charity sector you see organisations compete with each other for the same people’s cash, the same people’s time and the same pots of money and in the end it can be counterr-productive.  Live Life Then Give Life’s core aims are to promote organ donation in the UK, so if working alongside other charities suits a project best, that’s what we’ll do and if we can see that another charity does something better than us, we’re not going to try to replicate their work, but attempt to support them however we can to achieve the same goals that we are.

So the plan is coming together and the potential for Live Life Then Give Life as a charity is huge.  I can’t wait to be part of it.

Everyone at Live Life Then Give Life is bouncing with excitement at the moment as we’re going to be taking part in this year’s Great British Duck Race along with hundreds of other UK charities – and you can, too.

The idea is a bit mental, but brilliant at the same time.  People (that’s you) can adopt a small rubber duck for £3 each (£2 going to the Duck Race and it’s official charities and £1 to Live Life Then Give Life), which is then set free down the Thames on Sunday 31 August over a 1km course from Molesey Dock near Hampton Court Palace.  The first duck to complete the course wins £10,000 for its adoptive parent, with another 30 top prizes to pick up if you lead the field home.

It’s a great, fun way of supporting us as a charity as well as running a chance of winning big.  This year the duck race is aiming to beat it’s own world record of 180,000 ducks floated on the Thames by hitting the 250,000 mark – a quarter of a million ducks all swimming at once.

Supporting us couldn’t be easier – simply go here (http://www.thegreatbritishduckrace.co.uk/charitypage.php?charity=543) and click through to our purchase page.

We’d love to have your support and love it even more if you managed to win the race and raise our profile.  Go get a duck and have some fun!