Love me, loathe me, or never heard of me before this is important…

My Fellow [insert your favourite term be it GUCHs/ACHDers/Turnips*], this is one of those times where you can make a real difference.  Not just for yourselves but for everyone who has our condition now and in the future. for now.

The NHS is reviewing how we are looked after. We’re at the stage where you chipping in can be the edge of a lever.  Sticking your thoughts in now can influence the Advisory Group’s thinking before it goes out to formal consultation.

My vested interest, I’m an Advisory Group member.  I’m there as the Children’s Heart Federation representative with a special interest in making sure transition works.  As I hope most of you know I also am a  GUCH/ACHDer/Turnip*.  

 As part of the Advisory Group my job is to make sure the standards make sense, will work for us the patients, and are in my phrase of the day are “pragmatically aspirational”.  I’m geographically neutral, I have to be, the standards have to be and we’re working very hard to make sure they are standards which result in excellent care – not favouring one model over another, but drive standards up for everyone.

Some of you already have contributed, either by email, or by coming along to one of the sessions.

Thank you.

If you haven’t been along, there’s still time – there are sessions in York and London this week (I have advertised them before, sorry if you’ve not spotted them), and as importantly you can send comments into the email address for the process.  Even if you’ve been to the sessions, send your comments in – make sure they get heard.

All of the details are here:

http://www.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease

Some of you will be cynical about whether your comments will be listened to. You have my word that I will do, and that I will do my best to get others to listen.  You may not like me; you may not trust me, but I assure you of this – every comment received will be analysed, the Advisory Group will look at them.  Otherwise the Advisory Group will be finding out that I can be even more awkward than I have been to date.  Oh, and they’ve had that lecture already.

This is the 1^st stage of talking to people, the chance to get your thinking in early.  The next time you’ll be asked is the formal consultation, so please get in early. Get in with your comments, your thoughts, don’t let others think for you or put words in your mouth.

I have a dream, a National Health Service that supports all adults with congenital heart disease, wherever they are, whatever their circumstances. That service is a genuine health service, not an emergency service. So from when we’re ready to be grown up’s to when we die we are helped, aided and advised on how to live our lives as close to how we want to as possible.

So please, comment on the documents.

TTFN

Paul

*Turnip relates to a long debate about what we as a group are called… Ok if a joke has to be explained its not funny;-)

Killer Keswick...

At the end of the day I was 5 minutes outside of my target time, so not a bad effort...

I have no idea why I started throwing up at 4km - I was doing fine, gently moving into plod mode, hitting my KMs in the times I had in my head.  I sipped the water from the first station, and promptly my guts went south and my energy bar came north... Deeply deeply unpleasant - and nothing was different from most other runs I've done in the last couple of years...

So I retreated to the 1st aid van, sat down... I'll call this my Sophie Raworth moment.. waited for the bile to ease, and was ready to divert down the 10k route.  But I started to feel better, and the guys at the 1st aid station were reminding me I had another 5 hours to finish the course...

So I buckled down, and started to walk... at that point I knew I was the last half marathon runner on the course.  I expected to be last, hell my estimates were 13 miles and 1500ft of ascent and a target time of 3:30...

Then the route went nasty, the first hill was tough... and by that point some of the marathon runners I'd chatted too were going past, and sating it only got worse from here on in... They were right.

200 metres of height gain in 2000 metres... On wet, slidey grass, with occasional rubble... Oh well, after the pain of the hill from hell came the sheer terror of losing 300m in height in  4 km... Some good fell runners are graceful down hill, good runners can appear to glide down hill... I look like a terrified hippo trying to jog as fast as i can without breaking an ankle...

I hope that some of the photos of that hill descent come out, because I'm not sure if I had a grimace or a wild maniacal grin on my face... Either way it was a hell of a downhill blat...

The second loop was shorter, and a little easier... only 200m of height gain in 3km... I'd also pretty much recovered from my incident - and I'd become more savvy about my abilities on the hills... I took the flats gently, because the flats always ended with a hill... I strode up the hills (well in my mind I strode).  I did miss my walking poles - lesson learnt, always take my poles.  and I smiled/grimaced and looked like a running hippo on the downhills.

A measure of how much better I felt is that I ran a negative split - so my second half was faster than my first... First 11km was 1h 53 min, the second 1h 42min - and yes the less tough hill helped a lot.

And I didn't come last, I came third from last...

The question we ask ourselves at the end of these runs is will we be back... The simple answer is yes, I have unfinished business to see what this metabolism compromised, cardiovascularly inefficient system can do when nothing else goes south, and north...


So, what next... Next is a bit of recovery, hopefully a massage later in the week and then other stuff I'll blog about in the week:-D

TTFN

Paul
 
  

Jubilee Weekend Blogging pt 3 of 3

So the weekend is over...

A weekend of pomp and pageantry...

And an anniversary for me, of meeting The Queen... Nice when you can name drop like that:-)

Two years (and a few days ago) I received my MBE, in a day I'll never forget.  She is iconic, majestic and incredibly short... The real reason we're told to only bow from the neck, isn't a question of respect, but because if I'd bowed from the waist I'd have headbutted the Head of State...

Never assume that she never smiles, she radiated charm and calmed down all who stood before her that day.  And every day she meets people.

And yes the republicans will moan, and yes they have some small points. But every country without a monarch invest something else instead... with a variety of trappings to go with the post and significant dates.

So, as I said at the time in response to the challenge of what I'd do next... I've carried on, awareness has been raised in strange places, questions have been asked in high, and low, places.  And hours have been put in, so many hours - the West Coast Line (the train from Liverpool to London) is my friend, I know every turn, I instinctively know when we're not going as fast as we should be, when the train doesn't feel right...

I'm not sure if I'm doing enough, but I'm still trying... Taking my mix of deep cynicism and passion out wherever I can, and trying to improve things.

Part of that is challenging myself, and this year the target is 2012km, 1250miles... and today I clocked up 600 miles, with a stroll out from Chester to Saltney (and back) and then a trip around the walls of Chester, an old favourite.

And old favourites lead to new challenges - in 12 days I'll have just finished the Great Trail Run, a half marathon with hills, big hills... That should take me well over half way... Let's hope so:-D

TTFN

Paul

ps lets see what the new toy can do....

Jubilee Weekend Blogging pt 2 of 3

It's not often that medics welcome patients into their conferences...

It's not often that we're welcomed with very open arms, as partners in our care...

It's not often I almost whoop for joy in a scientific lecture...

Where was I - I was at the Annual Scientific Conference of the British Cardiovascular Society.  As a Trustee of the Heart Care Partnership, its always a delight to go along and see how we, the patients, are seen and perceived by the medics and specifically the cardiologists.

There is a worrying trait in some of us congenitals to view the other cardiac patients as bringing on themselves, and getting an easier life than us because of it.  It's not a view I've subscribed to, and in simple terms genetics and environment are difficult for anyone to control.  I'll also come onto some figures that should make all of us congenital have pause...

But first the HCP - this was that most unusual of things a patient strand at a medical conference, organised and delivered by patients and their representatives.  It was held in memory of the first president of the HCP David Geldard, who would've loved the mix of medics and professionals and most especially the patients who lined up to talk to a mixed audience - the days of patients only talking to patients and being talked at by medics are over.

A measure of the importance the BCS places in the patients voice is that the next President of the BCS was the first speaker, highlighting how the relationship between medics and patients has changed, then sessions on the impact that representatives groups can have (and the tightropes they have to walk to be truly representative), how we can be useful in defining and designing studies into our own care.  A politician stood up and asked for the medics to support their own points of view - so no back biting, and more importantly no back sliding from the difficult decisions - the examples weren't cardiac care but has resonances for all in the room.

We then looked at the support needed for the voice to be heard, the wider network of family, friends and carers and especially important from the voice itself.  Evie is a 15 year old torch carrying with HLHS, and trust me if the medics think I'm a handful, then give her a couple of years!  She was confident and articulate way beyond her 15 years, and as I said it is very good to know that some day I'll be able to retire and let her, and others like her, take up the next stage of the fight.

I then leapt sideways into a more technically medical session than you'd normally expect a patient to go to.  However, a session on exercise and congenital heart disease couldn't be missed.  I've say through a number of these before, and often they've left me depressed and feeling like some sort of freak, not this time.  What unfolded had me aghast and giggling...

Let's start with why we shouldn't be complacent about coronary heart disease... over half of us adults with CHD have been shown to be obese, many of us show early signs of coronary heart disease and by all accounts bypass surgery is going to be "interesting" when you've already had structural surgery... That not "interesting" in a good way if anyone was doubting.

Then the guidelines on exercise were dissected, and the lack of evidence they are based on presented.  Yes, there is a need for some of us to be more sensible than most, and yes we may never be the fastest, but the evidence for doing something far outweighs the evidence for doing nothing.

There is a revision of the guidance in the pipelines, and it should look something like this: http://www.yorkshirecongenitalhearts.nhs.uk/templates/Page.aspx?id=709

The key for me is this: Many patients are capable of doing more than they think.

We've spent many years being told what we can't do, now its time for us to become the powerful patients and ask why not, our hearts cannot be an excuse for the time bomb of coronary heart disease we may be facing.

So go on, ask your doc what you can do... Don't jump in and try and run marathons, plenty of people without heart conditions have issues going long first time out, but rather find something that you enjoy, that you might not have tried before... If they say no, ask them why, and I hope you get the same supportive answers I've had.

TTFN

Paul

   

Jubillee Weekend Blogging pt1 of 3

I've been busy... So you my lucky readers will have the pleasure (dubious or otherwise) of 3 blogs...

One on an update on my running

One on the British Cardiovascular Society meeting

and one on things general...

So running...

In a couple of weeks I'm doing a half marathon in the Lake District - with a fair chunk of up and down...

http://www.greattrailchallenge.org/TheEvent/Default.aspx I'm doing the half, because I don't know how much the hills and terrains will slow me up, it's been 4 weeks since Belfast so my legs are now fully recovered (the 10km personal best helped gee up the marathon blues)...

However, training is partly about going beyond what you'll face on a race day, the Kenyans say "Train hard & run easy", or my modified version "Train hard & run less painfully"...

So, the Great Trail is going to be running a third to a half of a way up a mountain.  My training to go as fast as I could to run up a full mountain.  Fairfield is mountain I love, and one I know fairly well, which reduced the fear of the new and made it something that if the running thing didn't work I would enjoy walking around.

Now, normally Fairfield is a 7-8h walk, at least it is for me, so anything under 7 I was going to be happy with.  Throw in a hot spell (it was hitting 30c in the valleys at times) and gale force winds then it was a proper challenge... and met my criteria for being tougher than anything that GreatRun is (probably) going to throw at us.  For instance, I suspect the route won't include a V0 bouldering problem (I went the walkers way, rather than the runners way... ooops).

So, how did I do... I was blown/tripped over once.  Found an energy sweet I don't like, decided to invest in a new hydration pack... and finished in 4:49... As ever the details are here:


As ever my post run analysis was honest - could I have gone faster? Yes, by choosing the right route (a bouldering problem will slow me down, and a 6ft jump ain't in my repertoire, by being more confident on the rock strewn paths (time and experience will bring that) and by fuelling and drinking better on the go... However, I'm not complaining, a sub-5h Fairfield, 10 miles and 3000ft is good for me.  Ok, the course record is 75min, but that's just silly!

So, 2 weeks... Plenty of time on the evil stepping machine to simulate steep hills, try and find rough and ready paths, and keep the fitness levels up there.

Those watching on Facebook will have spotted I've changed apps for my instantaneous updates, I've a new phone, with a new operating system so have moved from Cardiotrainer to Endomondo... So far so good...  So the HTC Desire bows out with 936km this year, and so far 18km on the Lumia 900 - which means I'm 8 miles shy of 600 miles - good job I've a long weekend:-)

TTFN

Paul